2014/07/28

Crazy Dreams....


Boy, have I been having them lately. The good thing about not having a full time job right now is that I am actually getting sleep and therefore I am able to dream again. The good news is that most of them are not the bad, shaking, panic builders that I have been more likely to have over the last few years. If dreams are windows into what someone is thinking... well, Father help me! So if you can stand it, here's a taste...

… dressed in black climbing through by bedroom window. I'm clearly in a big city again, maybe even Vegas, and I am walking down the street desperate not to be seen. I enter a store and buy some croissants and quickly leave slipping into the shadows. I seem to immediately find a park with large hedges and I sit in the dark, stuffing myself with the croissants. I feel the lightness and softness melt on my tongue and I wake up... happy it was a dream so I didn't 'really' do it and so I am not sick, but also feeling a bit bereft. It feels so real and I miss that sensation a lot....

… sitting in the dirt, a small brush in my hand. My hands are digging, softly pulling up the dirt. Carefully sifting through it and slowing down when a flash of dirty yellow-white is seen. Carefully removing the bits of bone from the ground, I brush them off and then set them aside. My interest and horror wanes after the bone is clean and so I continue to dig... continue to sift through the soft lomb..... and repeat the process.

… sitting Indian style upon the ground, back to the wall in the corner.... A bread bowl in my hand, warm and fragrant, full of a thick onion soup, brown and and full. I sit silently and watch the man leaning against the table starting at his food and after a long time of both of us sitting in silence, he pushes his bread bowl away, uneaten. While I know he is there, he seems to not know of my presence... almost like I entered his memories in a pensieve so I could view, but not be known. While there is silence inside this room, outside the door the noise of horses and men preparing for battle is filling the air. And so King Richard stands, looks around the room and exits.... and I sit thinking, knowing that he will lose the Battle of Bosworth and the thought comes into my head “Richard III had to die so the world could move forward”... and the world does move forward in the early 1500's with the Renaissance and the Tudors and the Enlightenment. So I watch images flow through my mind.... the sneaky Henry and his beautiful ancestress Catherine of Valois, the Regal Elizabeth I.... and the redrawing of maps and steam engines and horses running across the plans and child labor and trees falling and border fences and anger and groups protesting and the middle east on fire.....

...sitting at a table with a plate of shrimp alfredo in front of me in a quiet restaurant. The walls had dark word panels on them and the table had a lacy tablecloth with a small candle and a few flowers sprinkled around the table. And there I sit, chatting and smiling with Nick Frost. I can't hear what either of us is saying but it just seems nice and calm and fun....

Those are the ones that I remember... how funny are they?!? I am not someone who knows how to analyze dreams very well- I need to have dreams that are very specific for me to do that with any kind of accuracy. :) The only things that I do get from these dreams is that I am being silly enough to wish for food I can not have, I might be ready to casually date and that I might be finally getting to the bottom of the last of my feelings about the divorce and finding ways to deal with it. Who knows...? Maybe I just want a croissant... Anyone have an extra? ; )

2014/07/19

Dangerous Rhetoric


Yesterday, I found myself in an unusual situation in more ways than one. As I couldn't sleep, I went to the gym before work... way too early in the morning and found myself running on a treadmill in front of four television screens. The irony is of course that I haven't owned a television in over a decade and so experiences with one are few and far between... but four! It's a bit like being offered piles of riches that you don't think you need and are confused as to why others think they are valuable. This opportunity gave me an interesting opportunity for reflection and experimentation.

As most everyone in the first world probably knows by now, an airplane manned by pilots employed by Malaysian Air was shot down and crashed near Grabovo, Ukraine. With 298 people on board flight MH370 - all who perished- the only thing that seemed known immediately was that everyone on the plane died and that the plane was shot down over eastern Ukraine along the border to Russia. So as I jogged on the treadmill, I looked up at the screens and over the next few minutes I realized my opportunity- all four televisions were showing news from four different stations; ABC, FOX, CBS, and NBC. So for a girl who doesn't watch news, I was able over the course of over a hour to watch all of them at once and really compare their coverage of the situation. And even from a lack of experience as a news hound, what I found wasn't really surprising.

On three of the stations, the story seemed to be covered pretty thoroughly, but also with some caveats. As the news was raw, the situation just unfolding and with very little confirmed information. Only the confirmed facts were given definition and were described in definitive terms – all passengers were dead, the flight, where it went down, etc... After that, the language was was more vague... “Investigations are underway, the black box might be, etc... There were pictures... frankly, terrible and devastating photos and descriptions from eyewitnesses that felt so painful and hard to hear. But not a lot of speculation or opinion. And there would be breaks from this tragedy- each station took time to talk about other events such as wildfires, the situation in Israel and Gaza (just as horrible a problem I might say), the indictment of FedEx over shipping medications illegally and gold found in a shipwreck off the coast of South Carolina. And more such as a court overturning another gay marriage ban, the typhoon headed toward China... The world is a big place with much going on in it.

The same could not be said of FOX news. While they seemed to have the same details, it was pretty astonishing to me with how they used them. Small lettering on the bottom of the screen would say the 'facts', but the people talking didn't give any facts without a lot of supposition and even things that were only opinion.... Most of he time they didn't bother to mention any facts that I was learning from the other stations. I felt the anger of the commentators but I was also impressed by how neatly they could draw me in and if I hadn't been able to see the facts from other sources at the same time, I may never had gotten them. The wording that was used was also extreme and violent in its own right. It is no exaggeration to say that every sentence spoken, every word that was said seemed conveyed to expressed three points and only those three points.

1. That this tragedy was caused by the Russians and ordered by Vladimir Putin himself.

2. That President Obama must 'break' Russia and Putin to show the Russians and the rest of the world that we are the mightiest and must be feared and obeyed. That war, violence, 'blood', all have been caused by the evil that is Russia and we the good must vanquish it.

3. If we as America do not do this, we will all die and only terror will win.... with Russia and Putin as its leaders.


All the rhetoric made me think... and with was terrible. Some of the words still burn in my head over twenty four hours later. “Russia has their fingers printed all over this all ways”.... Really? How do we know? (Don't get me wrong, I suspect that in many ways this comment is true about this situation, but...) And then pictures of John F Kennedy and Ronald Reagan would show up on the screen with some of their words in quotes about bringing down Russia, tearing down communism and its evils... and then “The President must, he must... Eye to eye, toe to toe, he must stop them... whatever means are necessary.” “President Obama must show them what happens when Putin sheds the blood of innocents... and perhaps the most ironic quote that sticks in my
mind came from Geraldo Rivera- “I told you yesterday Putin has blood on his hands.” Yup, the same guy that my friends and I used to laugh at in high school who five days a week make the term 'talk show' synonymous with interviewed strippers, skinheads, white supremacists, families who hated each other, etc.... He's now reinvented himself as a political commentator. So I was able to listen to him wax poetic on the evils and wrongs by Putin- many of which must have been exaggerated...something he used to do on his talk show... he was well known for it.

I am no friend of Vladimir Putin. I do not know him and am aware that living in this country I will not have many opportunities. It has been obvious to me for years that as America and Russia are enemies, the media in this country can never really see anything that has to do with Russia unbiasedly. We as a people are still trying to understand their history and their culture without coloring it through the lenses of our biases and prejudice. And we are doing it poorly. This experiment cemented two things into my head. First of all, I have heard to the polls and studies that show that those who get the majority of their information from Fox news are more ignorant of the reality of the world than people who get their news from anywhere else. But it also explained the constant fear and anger I sense in so many of the people I know who are 'die hard' FOX news fans. How can you not be when you sit and listen to so much anger... and so much falsehood or at least unproven accusations that when they are proved false ... will never be redacted. That language is dangerous for all of us- even those of us who do not hear it. We have to live with the pain and anger it causes in others, many of whom we care about. After over an hour yesterday of interaction and attention, I will avoid giving any of my time to that station again. I only wish that so many others could see it for what it is. There is enough hate and anger in the world as it is without manufacturing more.

Yesterday so many died in a plane crash.... in the conflicts in Gaza, in Africa from malaria, in Syria... everywhere. So many people are frightened and sad and unsure what to do in their lives. In fact, some numbers suggest that 1 in five of the dead in Gaza are children- children may sometimes be called little terrors but very few people would call them terrorists worthy of death. Instead of creating anger, fear and division, couldn't we work together to grieve and to fight it, fight the terror and the pain with an equal amount of love and good will as well as the basic law enforcement stuff? I can only hope.....

2014/07/13

Thoughts on Courage- Sacrament talk 7/13/14


So, I gave a talk in Sacrament meeting this morning. For those of you who were unable to attend this morning and are interested this is a basic outline of the talk. Have a wonderful Sabbath day. :)

Good morning, Brothers and Sisters. I am not up here very often so I ask that you please bear with me as I struggle to find a way to articulate the ideas that I feel impressed to share today. When I was asked a few weeks ago to speak and was given a topic, I felt many things but my most overwhelming feeling was sadness. I do not feel that I have a good understanding of the topic nor do I believe it is an attribute that I have much of. After prayer and much reflection, I feel a little more able to discuss some aspects of it. As such, I wish to take a few moments of your time to speak about courage.

Courage is defined as the ability and willingness to do something that frightens you. All of us at some point in our lives have had to figuratively reach into the recesses of our soul to find the motivation and strength to confront or act in ways that we perceive and feel inspired are right and just... but are not easy choices and may come with consequences that are not always positive and joyful. It is this quality of heart and mind that may enable us to do the 'hard' things in the face of intimidation, fear and even physical pain and death. One thing that I feel like I have discovered in my reflections on courage is that, at least for me, it is easier to see and recognize courage in other people. The scriptures and history books are fairly riddled with individuals that we describe as courageous and we look up to for their actions... some of which have given a voice and freedoms as well as rights to all of us that we sometimes take for granted and do not always recognize often the pure blessings that we have been given and the pain, sweat and tears that have been sacrificed by others so that we may have fewer obstacles and challenges in our daily lives. To be frank, courage is sometimes being scared to death.... but doing the right thing anyway.

However, it feels important to take some time to recognize courage in its less celebrated and recognized forms... because to do so helps us to see and cherish it in ourselves and others. Brothers and Sisters, please take this opportunity to not only look inward but to look around you and you will not be able to ignore the clear but unspoken signs of courage around you. For some of our members, it takes significant and unmistakeable courage to accept a calling that they fear, to attend church or other social functions. For some of our friends and family, it may take all the hope and strength they possess to do what many of us consider a simple task- the ability to get out of bed in the morning.... the will to eat... the struggle to get through daily tasks that may sometimes appear insurmountable. For many people, courage is not just a byword or a famous name, but an unnamed part of their daily struggle. Lucius Seneca once wrote “Sometimes even to live is an act of courage.” Lauren Raffio is also quoted as saying “ Sometimes the biggest act of courage is a small one.” I know that I have felt so blessed and have gained strength for myself in my struggles as I have watched the courage of other members and tried to help them in their trials. I remember a talk in general conference a year or so back that discussed how trials are not always meant for the individual but for those around them... to help the community and the family of the afflicted to gain strength, understanding and more love. It comes to mind that we can only gain these things... the knowledge needed for more understanding, the ability to love more, and to find the power and motivation to gain strength if we are willing to use courage and to step into a situation and a pain that frightens us. Only by opening ourselves up can we gain these great blessings.

C.S. Lewis once wrote “Courage is not simply one of the virtues but the form of every virtue at the testing point which means at the point of highest reality.” When we look at courage through this lens, we can more easily recognize its presence in our hearts, our minds and in many of the choices we make. So it is important to stop and recognize why Heavenly Father has given his children the ability of courage to begin with. When human beings are presented with a different perspective, we usually initially react with either fear or love. These two powerful emotions are contradictory to each other and fear is part of our human experience...a trial that courage can help us to deal with.

2 Timothy 1:7 reads – For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.

I believe that we have been given the ability of courage to help each and everyone of us to struggle forward against the strong forces of fear that are invasive in our lives. One way to remove fear from our lives is given to us in....

1 John 4:18 – There is no fear in love; but perfect love casteth out fear.

To increase the amount of compassion and love we have for ourselves and others also takes courage as well as hard work. We can not increase our courage or love without actively working to do so. Prayer, introspection, study... all are needed for this difficult task. For those who believe that love and empathy towards others is a form of weakness I would ask you to please take a moment to examine that idea. Yes, allowing yourself to love leaves you more vulnerable to pain, uncertainty and despair. However, to have true love and compassion in this world of cruelty, judgment and fear... a person is also showing courage. And by doing so, we also open ourselves up for higher amounts of joy and happiness in our lives. Brothers and Sisters, weakness is not a sin no matter how often we tell ourselves it is. In an epistle to the Corinthians (2 Corinthians 12:10) Paul writes: “Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then I am strong.”

Which brings us back to the idea that courage is a virtue to be found at every testing point and it becomes easier to see how necessary it is in our lives. So knowing and understanding how important the virtue of courage is.... understanding that it actually makes all the other virtues possible... how can we help ourselves develop this virtue and become a more courageous person? And how can we help others to grow and do the same? From the scriptures I read, it seems clear that love is a big part of how we develop and use courage. Another scripture:

Psalm 31:24 says– 'Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.'

When I read this scripture I felt like what it was saying that another way to develop courage is to develop our faith and on this foundation, we are able to release the grip on some of the fear that binds to our minds. Another way to develop faith as a foundation for courage is to strengthen our spirits... to do things that allow you to keep the Holy Ghost with you consistently and to feel his presence and the sense of peace he brings. It is hard for fear to bind to your mind when the holy spirit is cradling your soul to him feeding it peace and assurance. It is hard for fear to grab any hold on us for long periods of time when we are consistently acting against it.

Another thing that we can do is to truly look into our hearts and acknowledge where we are weak and fearful. I am not suggesting that anyone takes the time to sit and mentally berate themselves for their weaknesses or their infirmities. For anyone to understand where they are weak, they must also take the opportunity to recognize the areas that they are strong. So please, take the opportunity when being introspective to think positively and recognize you and what you are in its whole spectrum of being. And where you discover things that you want to change or recognize are weaknesses, start the process of trying to change it. Because when it comes to changing fear, there is only one surefire way that I know to truly get past it and extinguish it. When it comes to fear, the only way out is to go through it- to force yourself to face what you are afraid of. The more you do it, the more your mind and body lower the fear response until it becomes a barely recognizable murmur in the background... easily ignored. Practice courageous acts! Pray for the strength and courage to make those small steps forward.

Brothers and Sisters, I want to apologize. I have had several times in the past that I have struggled with compassion for some of you. I still struggle with anger for past hurts and injustices that I feel keenly in my heart. I can testify to you that what has helped the most in my healing process is to pray to know better those who I feel have not understood me and to do things that are really hard and frighten me. It I am going to be honest though.... I think most everything frightens me. :) I tend to worry that since I am imperfect I will cause harm and pain to others and that fear can sometime make it hard to do most anything with others. I am very grateful for your understanding and compassion towards me even with my faults and my many, many mistakes. If I have offended or hurt any of you, I beg for your forgiveness. I feel so sad at the idea that any of you might struggle with pain that I have caused. I hope that as we go to our meetings today and as we leave to continue the daily grind so to speak.... Well, I hope that each of you will take a moment to recognize the good and strong spirit that you have, to take the opportunity to look inward and recognize the things in your life and about yourself that you fear.... and to make your first steps towards using your courage to confront and change them. If you need help, ask! Our leaders are able to help us and to get inspiration on your behalf. Listen and pray as much as you need to. And when the fear gets to be too much, recognize it, rest and gain the strength and courage to fight it some more. I pray that we can all do better. And I say these things in the name of Jesus Christ, Amen.

2014/07/12

2014 Poetry Corner # : "Catnip Pillows"


The cats are potted; all is chaos
paper ripped and flying in the breeze
created by running, stampeding cats
A small square pillow flies through the air
and is caught by another
and the pace becomes even more frantic
For an hour, all is in disarray
and then....

We all sleep- laughter and peace in our hearts
I love you and bow to your power
the green, the strong.... catnip!

2014/07/10

Journey Forth #6 : The Accidental Relationship between Gluten and Casein

When I was first diagnosed with celiac disease and started to research the disorder but also the foods that were available, I ran across many people who started pushing me towards a gluten free-casein free diet not only for myself but for Bug as well- we both have the disease and I think he can thank my genes for that ;) I was skeptical and I am still a bit questioning about some theories behind the diet. This particular diet is recommended for many people with celiac disease and other food allergies and it has become one of the diets of choice for individuals with autism and other developmental disorders and is sometimes recommended for people with mental health disorders such as schizophrenia. So I'll cover the basics of both. (Can I stress that I am wading into territory that is not firmly entrenched in science or statistics yet.)

The basics of this diet are that the individual not only avoids gluten but also all foods that contain the dairy protein. Some need to do this due to a true allergy and some people report that they have reactions that are similar to gluten intolerance when consuming the dairy protein. This protein can be found in butter, cheese, cream and milk, as well as yogurt and countless other products including chocolate, lunch meat or other prepared meat products and other non-dairy products. Symptoms of a true milk allergy are very similar to gluten intolerance as well as wheat allergy and celiac disease so trying to separate out the allergies and sensitivities can be pretty rough and time consuming. The most common symptoms may include; multiple skin reactions, anaphylaxis, multiple digestive complaints (including diarrhea, vomiting, and pain), multiple reactions in the lungs (coughing, sneezing, shortness of breath or wheezing), migraines, irritability, hyperactivity and other personality changes, insomnia, fatigue, depression and anxiety... to start the list. ;) If the challenge of eliminating gluten from the diet seems to be formidable, adding the need for casein removal can make the challenge seem like a herculean task.

There are a few reasons put forward for the similarities in symptoms and the immune reactions in the body between ingestion of gluten and casein. All three have been and are currently under study by researchers.

Casein is one of the most common food allergies and some studies suggest that as much as thirty percent of the general population have elevated amounts of the antibodies in their blood.

Casein has a similar molecular structure to gluten and they both create similar metabolic byproducts from their breakdown and digestion.

The enzyme that is needed to digest dairy is found in the brush borders and the tips of the villi in the small intestine... which is the first area that is damaged in gluten consumption for those individuals who are susceptible. With the necessary enzymes being in low numbers or decimated, the digestive process fails until healing and enzyme re-population has commenced... in some cases, a year after a gluten exposure.


For many parents of children with mental health disorders or developmental delays such as autism, this diet is not seen as a “diet” per se, but as a necessity and way of life. The changes in both behavior as well as mentation have been pretty well documented in self reporting and other unofficial forums. From personal experience, I feel a lot more in 'control' of my mind when I haven't had gluten- celiac aside. These experiences as well as watching and learning from friends and parents who have navigated these particular waters, I have found a great deal of confirmation in my mind that there is a great deal of positive evidence for recommendation of this particular diet for people with specific diagnoses or conditions. So even as I stress that the scientific evidence isn't there yet, I feel like I would be remiss if I hadn’t taken the time to discuss it. Whether the problems are due to the body's confusion of the proteins, lack or appropriate digestive enzymes or even another allergy... the problems are very real and need to be dealt with by individual sufferers on a daily basis.

What are your thoughts? Do you personally have experiences with this diet and individuals who use it? Please share if you are willing to...! :)

2014/07/09

Journey Forth #5 : Causes of Poorly Responsive Celiac Disease

For the majority of individuals with celiac disease on a strict gluten free diet, their intestines will, over time, heal and they will not feel pain or have to deal with many of the challenges that can be caused by the disorder. However, there is a small percentage of individuals with the disorder in whom the body and its ability to heal is either blunted or unable to function. This is sometimes known as poorly responsive celiac disease. There are a few situations that can continue to either cause the damage, keep the body from healing in a timely or appropriate matter, or even continuing some of the symptoms due to other physical malfunctions. The known reasons for these continued difficulties are:

1. Continuing gluten ingestion – In case many people haven't noticed, gluten seems to be in everything! So it can be very challenging to make sure that everything consumed is gluten free. To make that more challenging, affected individuals must be introspective and know themselves and their habits well. So, for those who wear lip gloss, lipstick, etc...that must also be gluten free. If you tend to suck on the ends of your hair... it might be a good idea to now what is in your shampoo. Eye drops and other medications can have systemic interactions and therefore can cause damage... even if it was just one drop into an eye. Hands contaminated with gluten and then used to chew nails, etc... can also cause a small exposure. And as mentioned in an earlier post, any exposure no matter how small is dangerous and can cause damage.

2. Refractory celiac disease (refractory sprue) – Approximately 5% of patients can end up with this diagnosis and it reflects the body's inability to heal from the damage caused by the past gluten ingestion. Any future exposure will continue to cause damage while past damage remains... leaving the individuals digestive system crippled and unable to perform its necessary duties with any efficiency at all. More energy is used to digest and important nutrients are less able to be digested even with the expense of the added energy. These individuals tend to struggle for the rest of their lives trying to improve their digestion and health and may take supplements and medicine to try and help the body not only digest but continue to function in a positive way by providing missing needed nutrients.

3. Pancreatic insufficiency - For some patients, their ability to appropriately digest food can be hampered due to the lack of needed enzymes.

4. Small intestinal bacterial overgrowth - This is actually a fairly common problem that can happen alongside the damage in the intestines, but doesn't necessarily repair itself when the intestinal walls themselves are starting to recover. In this instance, the bacterial balance in the small intestine changes in two ways -first, the bacteria in the small intestine changes form and becomes more like the bacteria in the colon (which is pretty different.) Secondly, this abnormal bacteria tends to grow faster in the small intestine so that there is simply too much of it around.

5. Undiagnosed sister disease – some patients do not get better very quickly for the simple reason that celiac disease wasn't the whole answer. So many patients as they begin the gluten free diet and continue to have symptomology and difficulty after several months discover that they also have a concurring digestive disorder. The most common of these are microscopic colitis, Crohn's disease and ulcerative colitis.

6. Casein ingestion – Some people find that their symptoms do not clear up until they stop consuming Casein as well. Casein is the protein found in almost all dairy products such as milk, yogurt, cheese, ice cream, etc... even breast milk. This reaction is not well studied or proven and is listed here because it is being studied and discussed among researchers, doctors, and patients. I have found for myself that, because the gluten protein is similarly built to the casein protein, I do have more problems for the first few months after a gluten exposure if I continue to eat dairy in large quantities... Bug has found the same thing. That is just my experience however. I'll discuss the theory more in another post. :)

In my case, I have been told that I do probably have refractory sprue. I have not been healing well and even a small exposure can really mess me up for months. Even without exposures, my digestion is not improving a lot. I can have what appears to be random pain that comes and goes and is fairly consistent over months. I have discolored patches of skin causes by the digestion issues in a few areas. As soon as I have insurance, my physician is planning on another upper endoscopy with biopsies to check on the healing process.... or lack there of. I won't deny I am not looking forward to it.

What are your thoughts? Experiences... please share. :)

2014/07/08

Journey Forth #4 : Some Common Myths about Gluten and Celiac Disease


When I was first starting the process that led to my diagnosis of celiac disease, I heard many things that I found out later either were not true... or the fact that they happened to be true in my case was unusual. So I thought I would write a short post on the most common myths (at least the ones that I have heard) and mention the true facts behind them.

1. Celiac disease is a simple gastrointestinal disease – For people who have celiac, they soon learn that the disease is anything but simple and doesn't only effect the digestive system. As discussed in past posts, this disorder affects every part of the body and some doctors believe that this disease is primarily a neurological one with some symptoms being digestive... and not the other way around. Even if that viewpoint isn't entirely true, the evidence of how this auto immune disorder effects and damages all organs and body systems seems pretty conclusive.

2. Celiac disease is a children's disease – While children are more likely to be diagnosed and diagnosed early, adults have the disorder as well in pretty high numbers. Estimates on undiagnosed adult celiacs range from 1 in 20 to potentially 1 in 6 for simply gluten intolerance. The symptoms tend to be more noticeable and obvious in children and adults tend to have less obvious or more ignorable symptoms... as well as the unfortunate fact that they are also more likely to be wrongly diagnosed. It is estimated that only 5% of celiacs have been diagnosed which makes up about one percent of the American population. Also, this disorder cannot be 'outgrown' and once truly diagnosed... you will have the disease for your entire life. In essence, there is no cure.

3. Celiac disease is the same as a wheat allergy – this really isn't true. While some people with celiac disease also have a wheat allergy (I might be one of those), most do not. Celiac disease is an auto immune disorder and as such the body responds differently than it does to an allergy. While both are dangerous and not problems to take lightly, they are not the same. Those with a wheat allergy can still eat barley and rye, while those with the celiac disease cannot.

4. Eating Gluten makes you fat – This isn't a true statement at all. Many people have started eating gluten free as a diet choice- some celebrities have made it more popular and 'trendy'. When it comes to gaining weight the answer is usually very straight forward... it you take in more calories than you burn, you will gain weight. While there are exceptions, the vast majority of people who start a gluten free diet will actually gain weight for a few reasons. One is that the person's lifestyle hasn't changed at all. Their eating habits, social customs and physical activity levels are what really cause an individual to develop weight gain. Another reason is that gluten free foods are thought by some to have fewer calories in them then their regular counterparts- with few exceptions, that is an erroneous assumption. Gluten free foods tend to have more fat and sugar to balance the lack of gluten protein. In order to make texture, color, and taste more 'normal', these are the ingredients that tend to be tweaked... and are also the main things that cause weight gain. Also, the average person's diet is heavy on grains with fewer legumes, fresh fruits, vegetables, and other foods that are naturally gluten free. Processed food is another factor in weight gain and so simply changing an unhealthy way of eating for an unhealthy diet without gluten doesn't really change much. Last, exercise is important for anyone and most people will gain weight if they tend to be sedentary creatures (anyone seen a thin sloth? :D Just kidding) All in all, most people do not lose weight on the gluten free diet and most individuals will put on some pounds when beginning the diet.

5. People who suffer from Celiac disease are skinny - Hmm, mostly not true. Yes there are a small percentage of people who are too slender due to the symptoms of eating gluten and the damage that it causes to the patient. However, around 40% of people who are diagnosed with celiac are overweight at initial diagnosis. Less than five percent of patients are underweight. So, not only is a person's weight not necessarily a good indicator for diagnosis, it may actually help convince people that they do not have celiac disease simply because of their extra weight... not a credible diagnostic tool.

So... do you have any thoughts on these myths? Know of one that I missed? What are your thoughts?

2014/07/07

Journey Forth #3 : Celiac Disease and its Ties to other Auto Immune Disorders


Not to start a post with a warning, but I will say that this post will be unpleasant... or maybe even boring depending on your life experiences. I think the topics and the information are really important though so if you are still willing, let's continue our travels. :)

In previous posts, we have discussed the basics of celiac disease, treatment and lifestyle, as well as skin problems that can go hand in hand with the disorder. For the next little bit, I wanted to talk about the numerous auto immune disorders that many patients may have to deal with as well. Because if there is one thing that seems pretty consistent, once you have one autoimmune disorder, your chances of developing another one are pretty high. Risks for several other health problems are pretty high as well and so I think it is important to acknowledge and discuss them for two reasons. One is that many people do not understand or have the knowledge of how these disorders do go together and are then unable to have themselves tested and utilize their medical providers for a full treatment of their symptoms and therefore, to be able to have the best quality of life they can attain. Someone who has celiac disease may attribute strange symptoms to that disorder and not discover and treat the other disorders that ail them. The opposite is true as well and someone with diabetes or severe arthritis may treat that disorder and not recognize that their disorder is so challenging because they also have celiac disease. This knowledge allows them to get tested or if they wish instead, to follow the gluten-free diet for a few months and see how it affects their body and the symptoms from the other diseases. Another important reason to discuss these disorders isn't just for those who need the information personally, but also for their friends, relatives, caregivers, etc... Knowledge is power and creates an awareness of challenges which in turn creates empathy, understanding and advocacy. As the Father has asked us to 'mourn with those that mourn', this insight helps all of us whether affected or not to not only help people as we meet and befriend individuals, but to also not hinder them accidentally in our ignorance. That is my hope any way!

I have not put these disorders in any specific order and so their listing is random. Signs, symptoms and their links to celiac disease could actually take a page or two for each one so I will out of necessity be fairly brief on each one and stick with the very basics. The debate on why people are more likely to develop some of these other disorders is still continuing. One of the most common theories is that undiagnosed celiac disease can potentially 'switch' on a immunological mechanism that can then cause some of these other disorders. However it does happen, what does seem pretty clear is that it is pretty easy for a person with celiac disease to develop another problem... and for someone with one of these other problems to 'catch' celiac disease. :)

Other Auto-immune Disorders


1. Type I Diabetes - This is a chronic lifelong condition in which the pancreas doesn't produce the needed hormone insulin or the body cell's failure to respond properly to insulin caused by insulin resistance. This hormone is needed for digestion to convert our food – the sugars, starches, etc... A complicated and chronic disease, this disorder is characterized by high blood sugar levels in the bloodstream over significant periods of time. Symptoms can include excessive thirst and hunger, frequent urination, fatigue and weight loss, as well as symptoms of neuropathy, inability to quickly heal from injuries, etc... Some studies show that as many as 30% of females with type 1 diabetes also have thyroid disfunction (most commonly Graves disease.) This disease if not well managed can significantly limit the individual's quality of life and usually lowers life expectancy as well.

2. Addison’s disease - a rare autoimmune disorder in the general population, this disease is characterized by insufficiency of the adrenal glands. The body depends on hormones developed by these glands and when enough hormone isn’t produced, the cells in different parts of the body respond; symptoms many include skin darkening, low blood pressure, muscle weakness or pain, hypoglycemia, joint pain, and neurological symptoms including depression and irritability. Other common complaints are nausea and vomiting, abdominal pain, salt cravings, body hair loss as well as weakness and fatigue. In bad cases, this disorder can become life threatening and cause death.

3. Crohn’s disease – most commonly characterized by chronic inflammation of the gastrointestinal tract- most commonly affects the ileum and the beginning of the colon. Symptoms may include diarrhea, rectal bleeding, abdominal cramps and sensations of incomplete evacuation as well as constipation or bowel obstruction. Other common complaints may be fever, weight loss, amenorrhea, fatigue and night sweats. One characteristic of this disorder is that it affects the entire thickness of the bowel wall although it has been known to skip areas… so that there can be a small area of perfectly healthy bowel surrounded by diseased and damaged tissue. (The symptoms of ulcerative colitis are similar, but these disorders are not the same and the areas affected by each are different.)

4. Hashimoto's disease – (also known as autoimmune thyroiditis) An autoimmune disorder of the thyroid that causes inflammation of the gland, but less hormone production- it is actually one of the most common thyroid disorders. Symptoms include fatigue, amenorrhea, intolerance to cold, enlarged goiter, weight gain, skin and hair that is dry and course, a hoarse voice, and neurological problems including forgetfulness, depression and anxiety. This disorder shares a common genetic disposition with celiac disease and some studies show that as many as 4.3% of individuals with this disorder also have documented celiac disease.

5. Graves disease - The most common cause of hyperthyroidism, this autoimmune disorder results in over production of thyroid hormones. Those individuals who have this disorder can suffer from a multitude of symptoms with include both physical (fine tremor, weight loss, enlarged thyroid, infertility, eye discomfort and vision changes, irregular and rapid heartbeat as well as skin abnormalities , etc...) and mental health challenges (anxiety, psychosis, mania, irritability, depression and personality changes.) Some studies show that around 4.5% of individuals with Graves disease also have celiac disease and the thyroid dysfunction most commonly caused by this disorder can cause a worsening of glycemic control and an increased needs for insulin helping to cause an individual to become diabetic or to make their diabetes significantly harder to control.

6. multi focal leucoencephalopathy – A rare disorder that causes damage to the myelin sheath on the nerves in the brain- a tissue that protects and covers all the nerves in the body. The damage causes the axions of the nerve cells to have difficulty communicating with each other and even the inability to do so. The symptoms are diverse due to the fact that this disorder can affect any nerve in the brain... which helps control the nerves in the rest of the body. Some common symptoms that are described by patients are clumsiness, headaches, memory loss, progressive weakness, visual changes, as well as speech and personality changes. This disorder can lead to disability and death.

7. Multiple sclerosis – It seemed fitting to follow up the last disorder with this one. MS is a disease in which the myelin sheath around the nerves is damaged, but the damage is not really restricted to the brain. Affecting the nerves throughout the body, communication and normal response between the nerves and their organs is interrupted and over time the nerves themselves are damaged. While the patient may have periods of time where the symptoms lessen, this damage is permanent. Symptoms include fatigue, tingling and pain in extremities as well as numbness and weakness. Patients may complain of double or blurred vision, problems with speech as well as tremors and a lack of body coordination.

8. Scleroderma – This is an auto immune disorder that is usually classified into two separate forms- localized and systemic. Affecting the connective tissue in the body, the major symptom in the localized form is hardened and sometimes waxy looking skin. In the systemic version, tissues in many organs may start to become hardened and less able to perform their needed functions. This causes many patients to suffer from high blood pressure and other cardiac problems, heartburn and other digestive complaints, as well as dysfunctions in the pulmonary, genitourinary, nervous, and other body systems.

9. Sjogren's syndrome - This immune disorder is caused by a person's white blood cells confusing and attacking the moisture-producing glands in the body. It causes dry eyes and mouth, difficulty with swallowing or chewing, vision problems, teeth cavities,fever, fatigue, vaginal dryness, dry skin and mucosal tissue, swelling, stiffness and joint pain, and enlarged paratoid glands. In sever cases, permanent damage to the liver, kidneys and lungs can result.

Separate Related Disorders

1. Rheumatoid Arthritis - a disorder caused by inflammation that is developed from an auto-immune response created by the body. Symptoms most commonly occur in the fingers and hands, feet and ankles, as well as the knees and the usual complaints are stiffness, localized heat or warmth, and aching or pain in the joints of the body. Over time, deformity in the joints can become prevalent as well.

2. Hepatitis - a medical term that describes the inflammation of the liver as well as inflammatory cells in the tissues that comprise the organ. This disease can be caused by many things including alcohol and viruses- When thinking of gluten sensitivity, the liver finds itself receiving blood that, instead of having finely digested nutrients, is filled with large amounts of undigested food and other waste products that can be toxic to the liver and cause the inflammation that is characteristic of all types of hepatitis. As the liver tries to deal with the unwanted substances, the white blood cells increase as well as the number of liver enzymes which cause irritation to the organ itself… which leads to the inflammation and permanent damage/ scar tissue.

3. Osteoporosis - A disease caused by weakening of the structure of the bones. As the bones are the body's structural foundation, this leaves the individual at risk for injury. It can be caused by either excessive or minimal bone growth and it usually happens without symptoms for a long period of time. Symptoms include breaking bones (easily), loosing height (becoming shorter) and curvatures in the spine.

4. Infertility, miscarriage and menstrual cycle irregularity – Anytime the body is struggling with a limited amount of nutrients for thousands of needy cells, some are going to get short shrift. And if you think about it, reproduction is really something that is a luxury- something that the body should be doing only when it's healthy and ready. While that doesn't always happen, it is fairly common for a nutrient-starved body to decide that it is in its own interest to not reproduce and so in many women, normal menstruation will stop. This can cause infertility on its own, but a lack of nutrients can also cause the eggs themselves to not be viable. I even found a study that suggested that gluten antibodies and damage can be found in the sperm and semen. Miscarriage can happen due to the inability of the body to provide the necessary energy and nutrition for fetus growth.

5. Epilepsy – A seizure disorder causes by inflammation is the brain (and sometimes the body) that manifests itself in a variety of ways including unusual sensations, muscle convulsions or stiffening, periods of staring and sometimes loss of consciousness – symptoms depend on the severity of the disease and where in the brain is affected by the electrical activity that causes the physical signs and symptoms. It is linked to both celiac disease and gluten sensitivity. Some ideas in the current debate as to why these disorders are linked are centered around calcium deposits in the brain and if the nutritional deficiencies themselves may cause the epilepsy.

6. Gluten ataxia – this term describes a neurological response by the body towards gluten which can cause irreversible damage to the cerebellum- the part of the brain hat is primarily responsible for motor control, balance and muscle tone. Due to the damage, individuals with this problem suffer with a loss of coordination in movement and other gross motor skills. Other symptoms may include dizziness, disorientation, problems with focusing by both the eyes and in thought processes, problems with balance as well as difficulty in swallowing or speaking. These symptoms tend to become progressively worse over time as more and more damage is done. It is linked to both celiac disease and gluten sensitivity. (This diagnosis is also still in the early stages of study with some physicians suggesting it isn’t a separate disorder from celiac disease… or even suggesting that it doesn’t exist at all.)

7. lactose intolerance – One of the few non chronic problems associated with celiac disease, it is caused by the systemic damage to the micro-villi in the intestines that destroys and limits the body's ability to break down lactose. The enzymes that help break down lactose are found in very small qualities in the micro-villi and are destroyed along with the intestinal wall upon gluten consumption. This problem usually resolves itself after a gluten free diet is instituted for a significant amount of time and the villi are able to begin to heal themselves and repopulate their enzymes in the 'brush borders' – also know as the micro-villi. The problem usually returns after renewed gluten consumption and intestinal damage.

8. vitamin / mineral deficiencies – This is a major difficulty for the newly diagnosed celiac and one that can take a significant amount of time and attention by the individual to attempt to repair. As the consumption of gluten causes the damage to the intestines, adequate absorption is limited and less able to be successfully managed. Some common deficiencies in this population are calcium, iron, zinc, many of the B vitamins as well as vitamins D and E. The 'cure' is to take great care to consume only items that have no gluten and, in some cases, to use supplements as well until the intestines are healing well enough to resume more normal digestion and absorption. As deficiencies in many of these vitamins and minerals are needed for normal function of many organs and body symptoms, it isn't really surprising when parts of the body start to fail or find themselves unable to heal and function normally.

A short list of other honorable mentions :)

Anemia, migraines, myopathy dementia, gall bladder malfunction, Raynaud's phenomenon, peripheral neuropathy, pancreatic insufficiency, many forms of gastro intestinal cancers, primary sclerosing cholangitis, juvenile idiopathic arthritis, idiopathic dilated cardiomyopathy, ulcerative colitis, microscopic colitis.... and probably many more that I missed. Whew!

That was a pretty long list... sort of depressing too! But a lot to think and talk about. As far as I know, celiac disease is the only auto immune disorder that I have... although my doctor is getting ready to test for two others. I have certainly struggled with infertility and serious nutritional deficiencies. I have started to show the signs of arthritis and Dry Eye Syndrome which is cause by immuno-inflammation. Otherwise, well I'm pretty good :)

Any thoughts on this? What experiences with yourself and others can you share? Did you read this post and wonder about your own health and the possibility of having more than one disorder when you become introspective and look at your current medical diagnoses? What are your thoughts?

2014/07/05

Journey Forth #2 : The Dietary Needs of Celiac Disease Along with Skin Challenges


In principle, a gluten free diet is quite a simple thing. An individual who avoids four specific foods that carry the gluten protein / amino acids are safe and can refrain from more damage, but also begin healing as well. Those foods are wheat, barley, rye and triticale. That seems pretty easy on the surface especially if you look at the list of flours and foods you can eat- sorghum, soy, seeds, tapioca, teff, wild rice, yucca, amaranth, arrowroot, buckwheat, cassava, corn, flax, Indian rice grass, legumes, millet, nuts, potatoes, quinoa, rice, soy, beans, vegetables, fruit, most dairy and meat, eggs, etc... However, that is where the simplicity ends.

For anyone who doesn't cook... or cannot afford fresh and unprocessed food, the challenge has just begun because an individual who tries to navigate the waters of grocery shopping can become seriously depressed. Fresh food is great and healthy, but pretty expensive. Processed gluten free foods are becoming easy to get, but there is not a lot of choice (most of it is desserts, bread or mixes) and they are also expensive- sometimes several times more money than the 'regular' product. (An example would be bread... the average price of wheat bread is around $2 or less... a gluten free loaf is usually at least $5.) And gluten is in everything else... it's in soups, spices, drinks, dairy products, snack foods, and almost anything you can buy to eat. It's also in almost all personal care products, medicines, and cleaners too. To add a little more difficulty, gluten-free food is usually not fortified with extra vitamins and minerals so it is more crucial that balanced and appropriate foods are consumed. So, for the most mildly affected, they need only navigate the complicated food maze of shopping and cooking and only worry about personal care products that can accidentally be ingested such as lip balm, medicines, mouthwash... some basics that some people do not use anyway. But for the more challenged, the more sensitive... for those whose immune systems are completely 'wacked out', they are in serious trouble. (I will admit that I made up that scientific term :)

For most celiacs, the skin is a great barrier not only for protection from many disease, dehydration and from gluten. Holding a pile of flour in their hand is nothing if they wash carefully and wandering into a bakery with the air full of the smells of fresh bread and wheat is only a tease to a person who cannot taste. To those, the majority of celiacs, I am a bit jealous. I have found that sometimes I do not even have the luxury of recognizing the 'smell' of the baking and the gluten that has been atomized in the air before I am struggling to breathe and heaving... bent over and sometimes vomiting with a strength and a lack of control I didn't know I possessed. There are many places I will not go due to this extreme reaction that my body and my mind can not seem to control. If I go into a place and start to not feel well or suspect that there is very little chance of being able to avoid exposure or illness, I leave. I may be angry, sad, frustrated... but I leave anyway. It's just too terrible to contemplate the pain and distress of an exposure... the pain and vomiting that lasts for weeks, the shaking, twitching, itching, headaches... no church activity, no community activity is worth it to me. I've tried too many times and suffered for sometimes months afterward to really risk that much again. One challenge that I have is that my skin is not a good barrier; while it does protect me from many diseases and most dehydration, it is an unloaded shield against gluten.

Skin conditions that can go hand in hand with celiac disease range from the 'simple' to the more complex. Only two conditions – that of hives and of Dermatitis Herpetiformis- can be clearly labeled a cause/effect of the disease. These others are still under study by researchers and medical professionals to determine which came first... the celiac or the skin disorder. It is unknown why some of these disorders occur together so frequently; wether they share common genetic roots or that gluten may be a common trigger. where aren't too many so I'll give some basic information on them with the formerly mentioned first. :)

1. Hives – This word describes a rash or outbreak of red bumps on the surface of the skin that are warm, itchy and usually appear quite suddenly upon either contact or ingestion of a product/object that someone is allergic to – some common allergies that cause this form of swelling and rash are peanuts, cats, bug bites, etc... This is not a very common side affect in celiac disorder and is highly debated in the medical community with some for and some against. I have sometimes gotten hives from external contact with gluten and I do very much avoid it as I have felt sick or had some symptoms afterwords – this has happened EVEN when I didn't know the gluten was there and actually thought the food or product was safe. Other people have reported hives after gluten exposures on the cheeks and arms/wrists.

2. Dermatitis Herpetiformis – this is a painful and itchy skin manifestation of the disease. For many people affected, they will feel minimal digestive complaints so this is usually diagnosed with a biopsy of the sores and bumps on the skin which are caused by the immune system in the intestine itself producing an antibody that enters the bloodstream and can collect in the small blood vessels in the skin, causing the sores and rashes. This quirk in the celiac disorder affects more men than women and the skin problems usually resolve with the gluten free diet and usually are not exacerbated by touching gluten- very much an inside the body sort of thing. And I must stress that this skin manifestation is in no way related to the herpes virus – this is a problem with gluten and celiac disease, pure and simple. These blisters are painful and can be very challenging to hide which adds to the stress of the situation for the affected individual. It is also very often confused for other problems including bug bites and allergies, eczema, dermatitis herpetiformis, hives and contact dermatitis and psoriasis.

3. Psoriasis – This disease causes the skin to become thick, scaly looking and red. It is caused when the immune system sends out faulty signals that tend to speed up the growth cycle of the epidermis layer of skin cells and is thought to be one of the most common autoimmune disorders in the United States. So skin cells that would take weeks to reach and replace the outer layers of skin would now arrive at the surface of the skin within days and it is this action that causes the common symptoms. Many patients often have high levels of gluten antibodies in their blood even if they haven't been previously diagnosed. In some individuals, psoriasis will not only affect the the skin but the joints and will develop arthritis as part of the disorder.

4. Acne – The bacteria filled, painful bumps and 'whiteheads' that can form on the face and the rest of the body are fairly well known to many people- especially teenagers. They can be caused by general hormone fluctuations, but in celiac disease, they are thought to form from hormonal imbalances caused by the malabsorption of nutrients... robbing the body's systems of the correct tools it needs for homeostasis.

5. Dry Skin (chronic) – This is very common in those individuals affected by celiac disease and in its mild to moderate forms are pretty easy to control by lotions and even supplements. It is thought to be caused from the lack of nutrients that are able to get to the skin due to the inability to absorb nutrients and it has been found that thought who follow the gluten free diet may still be deficient in some of the skins specific nourishing needs (such as vitamin E) due to removing most or all grains from their diet... even the 'safe' ones. For individuals whose bodies are really unable to recover from the gastrointestinal damage that has been caused, this can be a life long problem.

6. Alopecia Areata- This auto immune condition attacks the hair follicles causing the hair to fall out and in some cases, fail to regrow even with treatment. While the majority of sufferers develop bald spots on the scalp, other areas of the body can be affected as well including areas of beard growth. Some individuals also report symptoms of skin tingling or pain in the areas of hair loss. There is some evidence that living a gluten free lifestyle can change the health of the hair follicles and allow for healing and some hair regrowth... but it is certainly not a given! Also, an individual with celiac disease who continues to eat gluten can get alopecia from nutritional deficiencies from the malabsorption of nutrients- these deficiencies include iron, vitamin C and the B's, biotin, selenium, calcium and protein.

7. Eczema – This is a skin condition that is more likely to affect people who already have some problems with allergies. The skin develops inflammation and raised bumps or areas of severe irritability. Depending on the affected individuals skin color, the affected areas make look reddish to brownish color or may look lighter or darker than the skin around it. All the stricken areas tend to also appear dry with thickened or even scaly skin. No matter what the rash or discoloration looks like, it is always itchy! This disorder is found more often in children and there is growing evidence linking the development of eczema in those with celiac disease.

8. Keratin Pilaris – This skin condition usually manifests itself through tiny goosebumps- like marks on the skin that feel a little bit like rubbing a shark skin the wrong way or even mild sandpaper. They are most common on the back of the upper arms or on the back itself, but can also be found on other parts of the body on the skin. When they appear on the face, they can sometimes be mistaken for acne. They are more likely to be more prevalent in winter or in an environment that is cooler with a lower air moisture content. The good news is that while this spots are not pretty and may be distressing to the person who suffers from them, they rarely hurt, itch, or do anything that caused discomfort to the patient. This disorder is also common amongst individuals who also have eczema.

I am extremely lucky. While I have challenges with dry skin often and hives occasionally, my health has not been affected by any of these skin disorders. As research continues on into the causes and needs of all of these disorders, I am hopeful that many of them will become more rare and less challenging for those who have to live with them. Are you or anyone you know affected by any of these skin disorders? If so, do you have any experience with any of the potential links above? Have you been tested for antibodies or attempted the gluten free diet for symptom relief? If you have followed a gluten free diet for a while, will you share your thoughts on it and how it has helped (or not helped) you and your health? Any tips for those navigating the beginnings of gluten elimination in the diet. Please share!

2014/07/04

Journey Forth #1 : What is Celiac Disease and its Common Symptoms


So, what is celiac disease... also known as celiac sprue, non-tropical sprue and gluten sensitive enteropathy? The easiest definition is that it is an genetic autoimmune disorder which is caused by the body's hyper response to gluten in its system. When gluten is ingested and the patient is exposed, the proteins cause the immune system to produce antibodies (transglutaminase or tTG) that cause damage to the intestinal system- mostly to the small intestinal villi. At a minimum, the small intestines are damaged and they can no longer fully aid in digestion and nutrient absorption. So no matter how much the individual eats, they will be unable to get the nutrients needed from their food... or even supplements, causing many of the symptoms that characterize the disorder. And in severe cases, the intestines develop small holes which can cause leakage into the other areas of the body. It affects on average 1 in 100 people around the world and it is estimated that in America alone, over two million people are currently undiagnosed leaving themselves open to serious long term health consequences. Some doctors suggest that celiac disease is primarily a nearological disease and that the intestinal damage itself is a symptom... and not just a 'cause'.

The list of common symptoms is actually quite long... this post would probably be a page longer if I described all the symptoms that have been attributed to celiac sprue. No patient will have all of these symptoms (at least I hope not!) and many will only have a few of them. However, no matter how you look at it, these symptoms cover more than just the digestive system which explains why this disorder affects the individual in almost all aspects of their life.

Abdominal pain and cramps
ADHD - like behavior
Anxiety, depression and 'foggy mind'
Bloating and gas
Bone and joint pain
Canker sores
Chronic fatigue, sometimes 'knock out' sleep
Constipation or diarrhea
Emotional challenges including anger and irritability
Headaches and migraines
Missed menstrual periods, infertility and miscarriages
Nausea / vomiting
Restless leg syndrome
Rheumatoid arthritis
Tingling in the extremities

In some ways, I am very typical. I have struggled with canker sores since my childhood and have thrown up at least once a day since the age of sixteen until a few months after diagnosis and the subsequent dietary changes. One thing about the vomiting is that the abdominal pain would lessen or disappear after throwing up... a blessing in the yuck. :) I can sometimes struggle with depression, but most of the time my major emotional changes focus around anxiety and irritability. I have been told several times I am infertile (Bug is the best miracle I have ever received!) and I have never had a regular cycle until about a year after dietary changes. I have struggled with headaches, random abdominal pain and sometimes I wake up because my legs are shifting and 'twitching' while I'm resting. I also tend to feel tired all the time and sleep is something that I am not very successful with as often as I would like.

There is only one treatment for celiac disorder that is effective and allows the individual to lead a relatively healthy, normal life. The patient must adhere to a strict diet that is free from gluten and its proteins. Even the smallest amount of gluten, such as crumbs from wheat toast or a smidgeon of regular soy sauce can cause the unwanted immune response. Also, those individuals who are most sensitive can get an exposure not just from eating gluten, but from breathing it in or getting gluten into sores and other openings in the skin. And while it takes only a short amount of time for the damage to start, it takes weeks and even months for the healing to be effective enough for digestion to get back to a decent absorption rate. And for some, they may never recover fully due to the extensive damage done to the intestinal walls and villi. Depending on how long it took the patient to be diagnosed and to change their diet and lifestyle, there could be only small amounts of damage... or years worth of serious impairment and harm. In my case, when I was diagnosed with the disorder with the usual endoscopy and the unusual over forty biopsies, I was over thirty years old and the damage was pretty bad. My physician said that my stomach and the first several feet of small intestine looked like shattered and splintered glass. The pictures I've seen are quite horrifying and when I look at them and try to imagine what I see 'inside' me it's challenging. It's not difficult to understand why I tend to feel so much pain though. :)

There is a big difference between celiac disease and gluten sensitivity although it is not as easily seen. The big difference is that people with gluten sensitivity have the majority of the symptoms, but they do not have the intestinal damage as part of the package- the autoimmune part isn't their burden. Don't get me wrong- their bodies sensitivity to gluten is still uncomfortable and probably many other descriptive words. But the immune system doesn’t try to tear apart the body and that my friends, it a wonderful thing! How a person is diagnosed is quite simple. If you have the problems with gluten, but have no antibodies in your blood and a clean endoscopy.... then you are simply gluten sensitive. (Living it isn’t quite that simple, but I digress.)

So here is the first part of the journey! Next up I'll write about the a few of the less common problems – such as skin trouble as well as appropriate food and items to avoid. Thoughts...?

2014/07/03

Start of a Journey: Discussions on Celiac Disease


If there is one thing I have learned over the last several years after my diagnosis with celiac disease, it is that this disorder is so complex and causes so many different challenges to the body that even those who have been diagnosed and struggled with the disorder for years still find that their knowledge may not explain all the questions and concerns that they uncover going forward in their lives. I still have so many questions that my physician cannot easily answer or that science hasn't discovered an answer for yet that I find trying to explain the condition to some one who has never had it and make sure they truly understand feels near impossible for a few reasons. One reason is that every person with celiac sprue is different and exposure, heredity, years before diagnosis, and past eating habits can make a really big difference in how the disease is perceived and managed. The confusion that some people feel from knowing both individuals with celiac disease and also from knowing individuals with gluten sensitivity and not knowing the differences between the two disorders as well as the other differences mentioned above is truly understandable. After some recent conversations with a few friends and a wonderful Relief Society President, I have decided to try and take the opportunity to explain the basics about the disorder but also to explain how it affects me... understanding that my experience is not nor can it be the same as anyone elses. My symptoms, my challenges all may be different from the majority of other patients. What I can do is try my best to explain what I do know to the best of my ability- allowing people to correct me in the comments or mention their own experiences and try to start a conversation that will bring more understanding and acceptance for those of us who struggle with it, but also to those around us... who want to help and are not sure how and don't really understand what all the fuss is about anyway. :)

So I am going to break down the information into different posts based on topic and space as its actually a lot of a convoluted information. I will try and cover the most common symptoms as well as sister disorders. I think it's also worthwhile covering long term problems, foods both allowed and unacceptable, and other topics that may become a part of the life of someone with celiac disease. If anyone reading this has questions, wants to add things, etc... please do not hesitate to comment. Let's start a conversation and help and educate each other! That will make the effort that I am putting forth now worthwhile and a joy indeed.