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. :)

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