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Recent Activity
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- trents replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11Virus, celiac disease or both?
@Shining My Light, what do you mean when you say "the blood test not being 100%"? Were you expecting all possible celiac blood antibody tests to be positive in the case of someone who actually does have celiac disease? That seldom, if ever, happens. You are gauging too much on how you feel when you consume gluten and not paying enough attention to test... -
- Shining My Light replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11Virus, celiac disease or both?
Hi @RMJ, Thank you for you input. I really appreciate all view points on this, more than you know. Maybe I’ve done too much research. One thing I read would point to yes and then along comes all these variables that convinces me that my levels were high because of having a virus. I don’t like bread or pasta that much but seriously lov... -
- Shining My Light replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11
Virus, celiac disease or both?
Thank you @trents! I have been going back and forth on some gluten free some days and some days not trying to see if there is any reaction to how I feel. As much as I don’t want to I think given the blood test not being 100%. It’s fair to say an EGD is necessary. I do think before I go through with that I would run another TTG IGA... -
- RMJ replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11Virus, celiac disease or both?
Damage with silent celiac exists. I am a silent celiac. I was tested because I have the gene predisposing to celiac disease and migraines. All of my antibodies were high (TTG IgA, TTG IgG, DGP IgA, DGP IGG, EMA). I had a biopsy which showed damage. After going gluten free I felt better overall and have more energy. Unfortunately it didn’t help the migraines. ... -
- trents replied to terrymouse's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1
Probably celiac but also confused
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...
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@Shining My Light, what do you mean when you say "the blood test not being 100%"? Were you expecting all possible celiac blood antibody tests to be positive in the case of someone who actually does have celiac disease? That seldom, if ever, happens. You are gauging too much on how you feel when you consume gluten and not paying enough attention to test results. If the idea of eating 4-6 slices of wheat bread daily to get 10g of gluten is repulsive to you then go the health food store and buy powdered gluten, weigh it out on a food scale, and make shakes with it. Many report that Gliadin X helps them in a significant way to ward off unpleasant reactions to minor gluten exposure, such as you would get in a cross contamination situation. It will not work to prevent reactions when used with large exposures to gluten.
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By Shining My Light · Posted
Hi @RMJ, Thank you for you input. I really appreciate all view points on this, more than you know. Maybe I’ve done too much research. One thing I read would point to yes and then along comes all these variables that convinces me that my levels were high because of having a virus. I don’t like bread or pasta that much but seriously love baked goods. I’m scared to give those up “for no reason” I’m also scared to be doing damage to my body. I’m stuck in a situation where I’m scared and confused either way. It’s hard for people with silent celiac because you don’t “feel” like you are doing the right thing. I did see some advertisements on here about Giliad X? Is that a supplement for gluten and is insulin for diabetes? -
By Shining My Light · Posted
Thank you @trents! I have been going back and forth on some gluten free some days and some days not trying to see if there is any reaction to how I feel. As much as I don’t want to I think given the blood test not being 100%. It’s fair to say an EGD is necessary. I do think before I go through with that I would run another TTG IGA if my doctor would approve that. If levels are the same, I have no choice. 😔 In the mean time I’m going to enjoy gluten. The biggest problem I have is the thought of eating 4-6 slices of bread per day. That’s crazy! There has to be something comparable. Possibly an “average” of about that per day? Is there any lists of foods out there that are trade offs? (4 slices is = 1 donut) -
Damage with silent celiac exists. I am a silent celiac. I was tested because I have the gene predisposing to celiac disease and migraines. All of my antibodies were high (TTG IgA, TTG IgG, DGP IgA, DGP IGG, EMA). I had a biopsy which showed damage. After going gluten free I felt better overall and have more energy. Unfortunately it didn’t help the migraines. Sorry to be blunt and write this, but it sounds like you’re really in denial about the possibility of having celiac disease. Understandable, and not uncommon on this forum.
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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?
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