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Cd, Hepatitis And Immunosuppresants

umahal

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umahal Newbie
umahal
Posted

Dear all

I am a new member and thought I would write about my current experiences, and see if any of you have any feedback you can give me. I am 34 and have been questioning whether I have celiac disease for over a year now. Ever since I was a teenager I have suffered with IBS and interestingly, some people with IBS have underlying celiac disease. However, more intriguingly is my family history. My father has diagnosed celiac disease and he only found out about 10 years ago when he developed DH. He appears to be fine on a GFD and has had no problems. I would bet my house that my Grandma has celiac disease as she shows all the signs, ie: bowel problems, hopeless addiction to bread, osteoporosis and anemia. However, she is 90 and won

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seeking-wholeness Explorer
seeking-wholeness
Posted

umahal,

Welcome to the board!

Your personal and family histories certainly make ME suspect that you have celiac disease! All the pieces fit together so neatly, except for the negative blood work! It's true that your being on a gluten-free or nearly-gluten-free diet may have skewed the results, and I suspect the immunosuppressants may have contributed, as well.

I just found this article while I was browsing the site this evening. It's rather technical, and it pertains to patients with refractory celiac disease (which does not respond to the gluten-free diet) rather than regular celiac disease, but this part caught my eye: "Treatment consisted of azathioprine combined with prednisone for 1 year, which was tapered and, if possible, stopped. Results: Clinical improvement was seen in nearly all patients.... Eight of 10 RCD type I patients responded histologically, and complete normalization of villi was seen in four patients." From this I conclude that azathioprine may lessen the effects of celiac disease, which may very well translate to fewer antibodies in the bloodstream.

If you are not interested in attempting a gluten challenge at this point, have a look at the website for Open Original Shared Link. This lab can perform stool testing for celiac disease-related antibodies that is reportedly MORE sensitive than bloodwork AND able to detect celiac disease for a longer time after a patient goes gluten-free. They can even do a gene test!

I hope you find this information helpful, and I wish you luck as you pursue a conclusive diagnosis!

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  • Recent Activity

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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    2. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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