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- Helen Vajk commented on Lindsay Cochrane's article in Spring 2007 Issue2The Kiss of Death: How My Romantic Life Suffered after being Diagnosed with Celiac Disease
Bravely spoken. My son was only 2 years old when diagnosed, and certainly felt challenged by being different, and had behavior issues. A pediatrician who had treated many celiac kids once remarked at a seminar that even with behavior challenges in their youth, the celiac kids grew up by college age with great resources inside themselves for handling peer...- celiac disease
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- Russ H replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms12Coeliac or not coeliac
Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults... -
- Wheatwacked commented on Scott Adams's article in Diagnosis, Testing & Treatment5New Study Reveals Hidden Gut Damage in Celiac Disease—Even Without Gluten (+Video)
After reading the study on Mucosal reactivity to cow's milk protein in coeliac disease I stopped eating processed foods that have milk as an ingredient. Though Gluten Free, "in a fraction of coeliac patients, Cows Milk protein challenge may induce an inflammatory reaction of the same magnitude, as did gluten challenge". After three months my lower belly...- 1
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- Wheatwacked replied to Ginger38's topic in Coping with Celiac Disease6
The Struggle Has Overtaken Me
Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.
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Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.
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By Wheatwacked · Posted
Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with. -
Hi @CC90 Ah... that is very interesting. Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time? I could be wrong, but I would not be at all surprised if they find something on the next attempt. Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples! In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good. You don't want the same mistake to be made again. You say that your first endoscopy was traumatic? May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England? The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one. Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable. I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits. (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!) Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana
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Hi Cristiana Yes I've had the biopsy results showing normal villi and intestinal mucosa. The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.
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By Wheatwacked · Posted
Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives. An elevated level means your immune system is reacting to gluten. Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks. You want to create maximum damage. Not a medical opinion, but my vote is yes.
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