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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- Jmartes71 replied to Jmartes71's topic in Gluten-Free Foods, Products, Shopping & Medications2Medications
Thankyou because I met up with K B with well known bay area hospital once and she said she knows I don't like to take meds, I said thats incorrect, I have issues.Thats the one that said I was deemed " unruly " when she admitted I was celiac when I asked why am I going through this. -
- trents commented on Scott Adams's article in Winter 2026 Issue11Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out
@Brenda Sanchez, you must have a true allergy to wheat or some other ingredient that was in that pizza since a celiac gluten reaction isn't the same as anaphylaxis.- cross contamination
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- Brenda Sanchez commented on Scott Adams's article in Winter 2026 Issue11Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out
I tried gluten-free take and bake pizza. Went straight into anaphalaxis!! I'm not trying to bash any restaurants but 16 year old kids don't really care ( I'm sure the gluten-free crust was rolled on the same stainless steel table as the regular crust was rolled on) I believe Cross contamination almost killed me that day!! Is it just me but it feels like...- cross contamination
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- Brenda Sanchez commented on Nicky2925NZ's blog entry in Nicky2025BZ3
GLUTEN EASE TABLETS DONT WORK
Has anyone tried the NIMA gluten detector? I'm seriously thinking of investing in one. I haven't eaten out at a restaurant since my late diagnosis 4 years ago (I'm 55 in March) Any information would be greatly appreciated
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Thankyou because I met up with K B with well known bay area hospital once and she said she knows I don't like to take meds, I said thats incorrect, I have issues.Thats the one that said I was deemed " unruly " when she admitted I was celiac when I asked why am I going through this.
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Watch this space! 😊
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Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.
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I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10). Since then it has gone up to 10. I am not happy with that. I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut. My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet. I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
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Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer. Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better. AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten???? She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily. She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac?
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