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Coping with Celiac Disease
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Recent Activity
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- trents replied to growlinhard1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Colonoscopy with large are of inflammation
Sounds like your doctor is not very knowledgeable about celiac disease and may not be supportive of your efforts to run this down. Unfortunately, there is still a lot of ignorance in the medical community with regard to celiac disease. He/she may not even know what tests to run. Those of us who have been on the celiac journey for sometime have come to realize... -
- trents replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19
Not sure if this is Celiac or just a gluten-free intolerance
I question your terminology. I believe "gluten intolerance" is used as a synonym for celiac disease in most circles today whereas "gluten sensitivity" is used of NCGS (Non Celiac Gluten Sensitivity) though you still see a lot of inconsistency in how the terms are deployed. -
- cameo674 replied to cameo674's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?
Because of my brother’s supplement regime and my and my husband’s known gene mutations, all of the kids (26,28,30 - I should not call then kids) take PureTherapro RX Methyl Multi without iron, the MagTech magnesium supplement with 3 forms of magnesium, and D3. I am still trying to find a Fish Oil supplement for them that comes in smaller size capsules. I... -
- growlinhard1 replied to growlinhard1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Colonoscopy with large are of inflammation
Thank you for the response. I didn't think of the things you presented but they make a ton of good sense. I'm in the USA so no stipend for a formal dx. With the added cost of gluten free food, I wish there was some program to help. I bought a loaf of gluten free bread that cost $7.99 and my usual multi grain is $2.57! I REALLY felt the doctors taking... -
- knitty kitty replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19Not sure if this is Celiac or just a gluten-free intolerance
Yes, some people with Celiac do react to quinoa. I know i do. Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla...
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Sounds like your doctor is not very knowledgeable about celiac disease and may not be supportive of your efforts to run this down. Unfortunately, there is still a lot of ignorance in the medical community with regard to celiac disease. He/she may not even know what tests to run. Those of us who have been on the celiac journey for sometime have come to realize we need to be our own advocate and need to be appropriately assertive in order to get proper testing done. So, when the day comes for the appointment, here are some recommended tests you should discuss with your doctor that are celiac specific: At the bare minimum, the doctor should or: 1. total IGA. This test checks for IGA deficiency. If you are IGA deficient, then next test, #2 below, will give falsely low scores and may produce a false negative. 2. tTG-IGA This is the centerpiece of celiac disease testing and is the most popular test run by doctors. If the doc is willing, ask for these in addition: 3. DGP-IGA 4. DGP-IGG 5. tTG-IGG These five tests would constitute a fairly complete celiac panel and give fuller picture. What one test may miss another may catch. Here is an article giving an overview of celiac disease blood antibody testing, the relative sensitivities and accuracies of each test. The one test mentioned in this article I did not include in my list is the EMA which is not used often anymore. It is expensive to run and has largely been replaced by the tTG-IGA. One other thing to be aware of and that is if there are positives in the antibody testing, you likely would get a referral to a GI doc who may want to do an endoscopy with biopsy of the small bowel lining to confirm the antibody testing results. You would needs to still be consuming gluten for this one as well.
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I question your terminology. I believe "gluten intolerance" is used as a synonym for celiac disease in most circles today whereas "gluten sensitivity" is used of NCGS (Non Celiac Gluten Sensitivity) though you still see a lot of inconsistency in how the terms are deployed.
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Because of my brother’s supplement regime and my and my husband’s known gene mutations, all of the kids (26,28,30 - I should not call then kids) take PureTherapro RX Methyl Multi without iron, the MagTech magnesium supplement with 3 forms of magnesium, and D3. I am still trying to find a Fish Oil supplement for them that comes in smaller size capsules. I take the Metagenics lemon flavored Fish Oil Epa Dha 1000mg gels and the kids call them horse pills. They want something 1/2 that size bur don’t have a fishy taste.
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By growlinhard1 · Posted
Thank you for the response. I didn't think of the things you presented but they make a ton of good sense. I'm in the USA so no stipend for a formal dx. With the added cost of gluten free food, I wish there was some program to help. I bought a loaf of gluten free bread that cost $7.99 and my usual multi grain is $2.57! I REALLY felt the doctors taking you more seriously comment. That is a huge issue. I just had fairly extensive blood work done, none of which was testing for celiac, and everything came back normal. I felt completely dismissed by my doctor even though my symptoms remained unchanged. As a matter of fact, Celiac disease wasn't even on my regular doctors radar. I think after studying the symptoms and comparing them with my symptoms that should have been one of his top differential diagnoses. I will follow your advice and wait until after the bx to begin eating gluten free. I'm fairly certain of the diagnosis at this point because 4 days of no gluten has made a difference. I feel somewhat stronger, nowhere near as anxious or irritable, urinating every 2 hours instead of every 30 minutes to an hour and much less nausea. If anybody has any other words of wisdom, advice, really anything, please let me know..I'm kind of alone in this. -
By knitty kitty · Posted
Yes, some people with Celiac do react to quinoa. I know i do. Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease. And some of us react to corn (maize) as well. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients https://pubmed.ncbi.nlm.nih.gov/24152750/ P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?
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