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Booiegirl

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  1. Hoping somebody can help me - I am confused. I have celiac disease, as does my sister and nephew. OUr house has been gluten free for 7 years so my children eat very little gluten (only outside the home at friends etc). However, since Xmas my 13 year old son has been eating lunch at school more regularly so would have had been eating more gluten than he had previously (although still not every day etc.). He also had a really hard winter with infections, sick, headaches, no energy, losing interest in his sports etc. I thought maybe it was his age but then in the spring he told me he had been having some diarhea and bloating. And all of a sudden his increased ingestion of gluten dawned on my so I started to wonder if he had celiac disease. So from mid June until he had bloodwork the start of August I tried to ensure that he was eating gluten consistently and daily. He definately would have bloating (my other kids said he looked pregnant!) and was tired, but it was inconsistent. His blood work results are as follows: EOS % high 4.9% (normal below 4%) TTG high 19.5 (normal below 14) IgG normal 12.07 (normal 6.5-15.2) IgA normal 1.76 (normal 0.95 - 3.59) IgM normal 0.89 (normal 0.46-3.04) Originally our family doctor called with TTG results, said positive for celiac and given family history amd his symptoms we both felt comfortable forgoing scope (due to lenght of time it would take to get - just don't want him to have to keep eating gluten if it is making him feel crappy). However, when she called GI doctor he was reluctant to not do scope and prescribe lifelong gluten free diet for my son based on "weak positive" ttg. Our doctor said she did explain family history and that our house had been gluten free but he wanted the IgG, IgA and IgM results (to see if weak positive was result of those - but those came back normal). I suspect lower TTG levels are simply due to length of time that he has been ingesting gluten, but clearly I could be wrong! (also in googling high EOS - one of causes "could be celiac" - could also be other things but of course I though that was interesting) So, my questions are: 1. I always understood that a positive for TTG is positive - am I correct in thinking the lower ttg level could be result of not having ingested gluten consistently for a very long period of time? 2. What else could cause high TTG? 3. How would you interpret blood work results? Just don't know if I should have him go gluten free, or keep eating it while we wait on referral etc. Just I hate to see him feeling crappy if gluten is the cause, and it would be so easy to fix. But also don't want to assume that is the case if it isn't! Grr. So confused! Thanks for any help you are able to provide!
  2. I was diagnosed with Celiac Disease 6 years ago with positive ttg and biopsy. Since then, I have never had fully normalized ttg levels (did decrease to 27 at one point, now consistently 70++). Doctor just did subsequent scope to rule out refractory celiac - which he has. Here are biopsy results - CommentThe duodenal mucosa has near normal villous architecture - there are only acouple of villi which might have slight blunting. The vast majority ofvilli are tall and slender. There is a mild increase in intraepitheliallymphocytes. The intraepithelial lymphocytes have the normal CD3+/CD8+/CD4-immunophenotype. There is no aberrant immunophenotype in the pattern ofRefractory celiac disease type II and there is no lymphoma (specimen B sentfor flow cytometry is reported separately). This patient's initial biopsyfrom 2011 was reported as having complete villous atrophy by my colleagueDr. Sapp. The present biopsies have a near complete restoration of thevillous architecture, indicating a significant response to gluten-free diethas occurred. However, the persistent mild increase in intraepitheliallymphocytes indicates there might be some ongoing gluten exposure. Usually"Refractory Celiac disease type I" cases have widespread villousarchitectural abnormalities, so it is debatable if this should beclassified as such - if so, it is at a very mild end of the spectrum ofrefractory celiac disease. So good news - no refractory! But what is causing increased ttg levels?? Anybody have any ideas (they did test thyroid and diabetes - both normal) Thanks!
  3. Thanks. They have ruled out most other AI issues - been tested for thyroid, diabetes etc. Last time I was in he ran a slew of blood work and said he would get to the bottom of this. He might send me to hematologist because of a few of the blood work results but wanted to do scope first to see if damage still there or not. I haven't tried the Fasano diet but in reading that article I think it would be worth a try if the scope still shows damage, before being officially diagnosed with refractory celiac and going on steroids etc. Really want to avoid that, if possible. Just tired of thinking I am doing everything right and still having raised TTG levels, fatigue adn brain fog. Really annoying!
  4. I just had my 3rd upper endoscopy after being diagnosed with celiac disease 6 years ago. The reason for the scan is persistant raised ttg levels (70+) despite being strictly gluten free (our household is gluten free as well). So my GI doctor is concerned about the possibility of refractory celiac, hence the scope. My main symptoms would be fatigue and brain fog (but that could just be my life!), although I do have persistently low RBC counts, high MCV and high MCH results (but B12 and folate are in normal range, last blood work did not test ferriten). My question is related to a comment that the doctor made to the nurses when they were prepping me for the scope - he said we will be doing lots of biopsies and will need 2 containers - 1 with red cap for lymphoma. I was too stunned to ask why he was doing biopsy for lymphoma - never been mentioned before to me. And when I was in the recovery room I am pretty sure that I heard the nurse saying my name and urgent (but i was in recovery so drugged so maybe not, hoping not!). Anyway, has anybody else had lymphoma biopsies as part of a celiac scope? Is this normal? Trying to not think about it until I get results, but it is playing on my mind more than I like. Thanks!
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