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Probably celiac but also confused

terrymouse
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Go to solution Solved by trents,

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terrymouse Newbie
terrymouse
Posted

I have an endoscopy booked for mid-September to test for Celiac. My gp seems convinced it is celiac and I should eliminate gluten right away, but the gastroenterologist I was referred to says if I'm totally gluten-free then they won't be able to detect celiac from the endoscopy, and I should load up on gluten 2 weeks before the test. So I guess I shouldn't eliminate gluten then? Or stop and start again closer to the appointment date. But I'm also on the wait list in case they can get me in sooner, because I'm losing weight. I don't want to have to go back and do it over again if I can help it. They also were unsure if there isn't something else wrong with my stomach, so that's a possibility. I don't have the details but from what I understood my blood tests results were positive but on the low end. So I'm getting mixed up here, do I go gluten-free or not? Would 2.5 months of being gluten-free make any noticable difference? 

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trents Grand Master
trents
Posted
  • Solution

Welcome to the forum, @terrymouse!

Your GI doc is correct. Going gluten free now will allow healing to occur in the villous lining of the small bowel such that the endoscopy/biopsy may not show the damage to the villous architecture that is characteristic of celiac disease. Since your celiac blood antibody tests results are on the low side and don't "scream" of celiac disease I think it is important to go forward with the endoscopy/biopsy while still consuming gluten to ensure it will not be a wasted effort. The last thing you want is to have two different test modalities that unnecessarily contradict one another. So, unless the continued consumption of gluten poses an immediate and significant threat to your health, my advice is to (excuse the pun) "gut it out" until the endoscopy/biopsy happens.

There is also the option of temporarily going gluten free and then undertaking a "gluten challenge" in the weeks leading up to the appointment in September. Current guidelines for the gluten challenge are the daily consumption of at least 10g of gluten (the amount found in about 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of the procedure. But I would certainly give it longer than two weeks to be sure. And in view of the fact that it could happen sooner if there is a cancellation, I would encourage you to not go gluten free until after the procedure if your health permits.

By the way, what are your symptoms? What led you to investigate celiac disease as the cause of your medical issues?

terrymouse Newbie
terrymouse
Posted
  • Author

Thanks for clarifying! I'll put the gluten free thing on hold then.
In late december last year I suddenly started having digestive issues I never had before. My stomach started feeling tight most of the time, I got full very quickly, little to no appetite, constipation, I started to feel ill after eating - sometimes a stomach ache, sometimes nauseous, or lightheaded, or heart beating fast. Some things worse than others, I started avoiding fatty foods in general because they made me throw up . I haven't had issues with food like this before, so this is all new to me. I started losing weight because eating was such a chore.
I hadn't considered it could be celiac, but my GP added it to the list of things to test for and then referred me to the GI specialist when the results came back positive. They also found a large gallstone, which was causing me pain in the pit of my stomach, so I had my gallbladder removed in march. The pain is gone but otherwise everything else, the tightness and sensitivity and lack of appetite remains an issue, and I'm still losing weight. I was around 200 lb in december, right now I'm 152 lb. 

trents Grand Master
trents
Posted

A classic case of more than one medical problem going on at a time. We often forget that can happen.

Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?

terrymouse Newbie
terrymouse
Posted
  • Author

I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.

trents Grand Master
trents
Posted
(edited)

Lot's of folks would trade places with you with regard to the unintentional weight loss.

Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up.

Keep us posted.

Edited by trents

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      By trents · Posted

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    • Shining My Light
      Virus, celiac disease or both?

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    • trents
      Probably celiac but also confused

      By trents · Posted

      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
    • trents
      Probably celiac but also confused

      By trents · Posted

      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
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