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Possible coeliac.. help explain numbers?
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- knitty kitty replied to Brandy.GF's topic in Related Issues & Disorders3Turkey neck
Hi, @Brandy.gluten-free, You're not alone! I've been in the same situation. One thing I have learned is to watch my posture. Refrain from sitting with head and neck thrust forward, as often happens to people using computer screens for long periods of time, to people who smoke or vape, and to people who breathe through their mouths. I frequently find... -
- knitty kitty replied to LC9's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5
Chances of coeliac?
Hello all! @LC9, I think further testing for Celiac Disease is warranted, especially since you have the genes and still have symptoms even on a low gluten diet. Omeprazole is a proton pump inhibitor for acid reflux, but it is also an immunosuppressive. This means that your immune system is suppressed, and you are not going to make as many anti... -
- Aretaeus Cappadocia replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Iron loss and potential celiac.
I'm willing to bet a sound medical-economic case could be made for population wide celiac antibody screening once or twice in a lifetime, maybe something like as part of the starting school physical and maybe at age 30. These are just guesses as to when - a series of pilot studies could validate the idea and zero in on the optimal schedule. The test itself... -
- Scott Adams commented on Scott Adams's article in Summer 2026 Issue3Why Life with Celiac Disease Hasn't Improved in 10 Years, According to New Study
This may be of interest: Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:- autoimmune disease
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- trents replied to LC9's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Chances of coeliac?
Often, biopsies are not done unless there are positive blood antibody results. Biopsies are often a "reflexive" medical order, meaning they are prompted by positive results from other kinds of testing. @LC9, low gluten consumption can sabotage celiac blood antibody testing, as can, as I have already mentioned, being IGA deficient. In either case, it...
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By knitty kitty · Posted
Hi, @Brandy.gluten-free, You're not alone! I've been in the same situation. One thing I have learned is to watch my posture. Refrain from sitting with head and neck thrust forward, as often happens to people using computer screens for long periods of time, to people who smoke or vape, and to people who breathe through their mouths. I frequently find myself stretching my neck forward when looking through my bifocals. I try to remember to keep my ears over my shoulders and not breathe through my mouth. I use tallow balm to soften the skin. My favorite is Vintage Traditions tallow balm. Tallow balm is similar to our own body fat and is therefore better absorbed and used than mineral oil and petroleum based products. Most importantly, I found this weird exercise called "Mewing" which has worked impressively well for me. Doing this exercise has helped immensely with my breathing, and tightening up the muscles in the jaw and neck area. Another benefit is that doing the exercise prevents Resting B**ch Face! Hope this helps! -
By knitty kitty · Posted
Hello all! @LC9, I think further testing for Celiac Disease is warranted, especially since you have the genes and still have symptoms even on a low gluten diet. Omeprazole is a proton pump inhibitor for acid reflux, but it is also an immunosuppressive. This means that your immune system is suppressed, and you are not going to make as many anti-gluten antibodies, which can account for your negative blood tests. Anemia affects red blood cell production, but also white blood cell production, which can affect antibody production, and can result in false negative blood tests. Do discuss with your doctor discontinuing the PPI Omeprazole and undergoing a proper gluten challenge where a minimum of ten grams of gluten is consumed daily for a minimum of two weeks. A slice of white bread has about 1.5 to 2 grams of gluten. Less than ten grams will cause symptoms, but will not get the antibodies to move out of the intestines, where they are made, and into the blood stream, where they can be measured in testing. Do get the complete panel of tests as @trents said. Do get an endoscopy with biopsies as @cristiana said, because a great deal of the changes are microscopic and look "normal" with the naked eye. Do get checked for nutritional deficiencies. Iron deficiency anemia goes hand in hand with Vitamin B 1 Thiamine deficiency. All eight B vitamins, Vitamin C, Vitamin D, and some minerals like magnesium and copper are also low in people with anemia and Celiac Disease. Wishing you well on your Celiac journey! Cheering from the sidelines! -
By Aretaeus Cappadocia · Posted
I'm willing to bet a sound medical-economic case could be made for population wide celiac antibody screening once or twice in a lifetime, maybe something like as part of the starting school physical and maybe at age 30. These are just guesses as to when - a series of pilot studies could validate the idea and zero in on the optimal schedule. The test itself is minimally invasive and essentially zero risk, cost would be modest, and a lot of suffering and serious health damage could be averted. (As a side benefit to us, the current celiacs, there would be a lot more people diagnosed and finding ways to make the adjustments we currently make) -
Often, biopsies are not done unless there are positive blood antibody results. Biopsies are often a "reflexive" medical order, meaning they are prompted by positive results from other kinds of testing. @LC9, low gluten consumption can sabotage celiac blood antibody testing, as can, as I have already mentioned, being IGA deficient. In either case, it would be helpful to get IGG blood antibody tests run instead of the default IGA. I will attach a primer outlining the various tests that can be ordered to detect celiac disease.
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Hi LC9 Welcome to the forum. You are not the first person I've come across who was sent for an endoscopy but no biopsies were taken. I vaguely remember someone on this forum had the same thing happen to them, and another friend of mine who is unable to eat gluten was sent for one and they just looked with the camera! I found it extraordinary, but it does happen. It is very frustrating for people in this position as no-one has endoscopies for fun! Given that your twins have been diagnosed and you have these symptoms, I think in your shoes I'd probably first want to double check no biopsies were actually taken. In the UK where I live biopsy results can take quite a while to be reported back to the surgery/patient. I think mine took a few weeks. Also, not sure if you live in the UK too but if you do, unfortunately all sorts of issues are occurring at the moment within the overburdened NHS and all sorts of things can go missing, such as referrals, test results etc. But if you are absolutely sure that no biopsies were taken, I would have thought that would be the next step? Do you agree, @trents? Cristiana
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