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Related Issues & Disorders
Discussions concerning the various associated health problems, including but not limited to pregnancy, sleep & weight issues.
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- trents replied to Larzipan's topic in Related Issues & Disorders30Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?
Milaryrnn, your post is confusing. First, your celiac disease antibody testing is negative. By any chance had you already been on a gluten free diet before the blood draw for these tests was done? That would result in negative antibody testing even if you had celiac disease. Or, had you previously been diagnosed with celiac disease and had the antibody... -
- More2Learn replied to More2Learn's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms6Celiac Maybe a Possibility?
Thanks, yes, I've gone back and forth. There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews. I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating... -
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- Milarynn replied to Larzipan's topic in Related Issues & Disorders30Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?
Hello. I recently had an endo/colonoscopy and my GI Dr found lymphocytes in my stomach and small intestine. My TTG Ab, IgA was <2 (normal), GLIADIN (DEAMINATED) IGA at 5 (negative), and IgA at 237 (normal). However, a Lipase test revealed my levels were through the roof at 201, 3x above normal. My GI doctor ordered a dna test to confirm Celiac Disease... -
- kopiq replied to kopiq's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.
I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
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0December 11, 2024 12:00 AM
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By More2Learn · Posted
Thanks, yes, I've gone back and forth. There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews. I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating period. I'm either going to just going to use what I've learned in these last few months to purposely never cheat again (obviously there is the accidental glutening situations) or test first, and then do that. I don't need an official diagnosis so much that if I'm doing well I'm going to sabotage that by then starting to eat gluten again. I'm so glad you said this. Even from what I've read so far, it makes sense to me that this is a misconception. But growing up with all kinds of allergies, I can see how, as for the general population it's just easier for everyone to simplify it down to a type of "allergy," people would assume this. It's just how most people look at allergies and diets and gluten avoidance has been painted as both. I even see it in my journey to date, when I say I want a gluten free selection at a restaurant and I am asked "is it an allergy?" and it is so much easier just to say yes (even if the answer is actually well, no, it's autoimmune). Because the "yes" answer is the "this is serious" answer. -
Hello. I recently had an endo/colonoscopy and my GI Dr found lymphocytes in my stomach and small intestine. My TTG Ab, IgA was <2 (normal), GLIADIN (DEAMINATED) IGA at 5 (negative), and IgA at 237 (normal). However, a Lipase test revealed my levels were through the roof at 201, 3x above normal. My GI doctor ordered a dna test to confirm Celiac Disease. An A1C test was also done and I am pre-diabetic. When I got home from work today, I started to feel sever cramping in my jaw muscles. I started to have jaw muscle cramps in the the last year. Not to mention, even with good oral hygiene, I have rapidly developed periodontal disease. I did have a small amount of gluten, thinking it wouldn’t harm much but I was sadly mistaken. DNA results should be back in 2 weeks.
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I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
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Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter. (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.
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Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
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