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- cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease34Insomnia help
Very helpful @knitty kitty. Thank you. I am trying to remember what vitamin so alarmed my GP and I have a feeling it was A or E. I remember reading the pills contained well over the 100 RDA of whatever the vitamin was. One thing I'd love to ask you that has always intrigued me. One day when my anxiety was completely through the roof. I 'felt... -
- cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants9
What should I expect from a UK restaurant advertising / offering "Gluten Free" food
@trents Good question. We are strict at home, although I have to admit I've eating the odd chocolate at Christmas that turned out to have been made in a shared facility. But that is very unusual for me, and I had my last blood test before Christmas anyway. Therefore I have concluded that eating out must be the issue. But I'll let you know in September... -
- melthebell replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Persistent isolated high DGP-IGG in child despite gluten-free diet
Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all. Will also run the HLA typing - I have the swabs ready to go. -
- trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Persistent isolated high DGP-IGG in child despite gluten-free diet
Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years... -
- melthebell posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
Persistent isolated high DGP-IGG in child despite gluten-free diet
Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly...
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Very helpful @knitty kitty. Thank you. I am trying to remember what vitamin so alarmed my GP and I have a feeling it was A or E. I remember reading the pills contained well over the 100 per cent RDA of whatever the vitamin was. One thing I'd love to ask you that has always intrigued me. One day when my anxiety was completely through the roof. I 'felt the fear and did it anyway' - a phrase other anxiety sufferers may be aware of, which I found a powerful tool in my recovery - and visited a friend's house, even though I felt so wretched. For some reason I craved milk and drank two whole pints of milk in quick succession while I was with her - to this day I can't think why, because I don't usually drink milk 'neat' - I like it in tea or coffee, or hot chocolate. But I distinctly remember within a couple of hours feeling absolutely fine again for quite a while. I've often wondered was it down to this milk, which I've since understood contains quite decent levels of B12. Would that have really worked so fast? -
@trents Good question. We are strict at home, although I have to admit I've eating the odd chocolate at Christmas that turned out to have been made in a shared facility. But that is very unusual for me, and I had my last blood test before Christmas anyway. Therefore I have concluded that eating out must be the issue. But I'll let you know in September when I have my next blood tests done. 😊
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By melthebell · Posted
Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all. Will also run the HLA typing - I have the swabs ready to go. -
Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect. I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/ Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
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By melthebell · Posted
Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
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