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- deanna1ynne posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Inconclusive results
Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating glute... -
- NilsC commented on Scott Adams's article in Autumn 2025 Issue3Gluten-Free Food Ingredients That Can Trigger Celiac Disease and IBS-like Symptoms
Thank you for this information. I'm 70 and was diagnosed with celiac last year after 10 years of suffering, and I'm still figuring out what I can and can't consume.- additives
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- Inkie replied to Inkie's topic in Dermatitis Herpetiformis3Buckwheat
Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well... -
- Wheatwacked replied to petitojou's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease5Frequent nausea after gluten-free diet
Gluten free food is not fortified with vitamins and minerals as regular food is. Vitamin deficiencies are common especially in recently diagnosed persons, Get a 25(OH)Vitamin D blood test. And work on raising it. The safe upper blood level is around 200 nmol/L. "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune...
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By deanna1ynne · Posted
Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low. Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.) Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything. -
Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
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By Wheatwacked · Posted
Gluten free food is not fortified with vitamins and minerals as regular food is. Vitamin deficiencies are common especially in recently diagnosed persons, Get a 25(OH)Vitamin D blood test. And work on raising it. The safe upper blood level is around 200 nmol/L. "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases 🏋️♂️Good job! I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all. While you are healing, listen to your body. If it hurts to eat something, eat something else. You may be able to eat it later, or maybe it is just not good for you. Lower your Omega 6 to 3 ratio of what you eat. Most omega 6 fatty acids are inflammation causing. The standard american diet omega 6:3 ratio is estimated at upward of 14:1. Thats why fish oil works -
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The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
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