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jeslk

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About jeslk

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    New Jersey
  1. i would love any thoughts about some recent episodes I've had. Background is that I was diagnosed with celiac disease in 2011. It's always been described as "silent celiac" because I have never had symptoms and felt fine even at diagnosis. My doctor ran the test because of some vitamin deficiencies. I went strict gluten-free immediately and am very careful when I eat out (which is rare since I'm also vegan and it's a tough combo). My husband and daughter are not gluten-free, though, and while they are very careful, I'm sure I've been glutened over the years. Fast forward to the week after Christmas I went to a restaurant for dinner. It's an Italian restaurant with gluten-free options. I've eaten there three or four times in the past and never had any issues. This time, though, I got violently ill about two hours after dinner. There up everything and then had an achy stomach for a couple of days. I assumed it was food poisoning. Tonight, however, the exact thing happened but at a different reataurant. This place was new - had many gluten-free options and they seemed knowledgeable about cross-contamination. Yet, two hours later I was throwing up on the side of the road. I got it all out of my system and now don't feel great but don't feel nauseous anymore either. Mom staring to wonder if I have now gotten to the point where I do react to gluten. Has anyone had this happen where silent celiacs become symptomatic in such an extreme way? im also following up with my doctor next week. Thanks. Jess
  2. Hi all! Any updates on this? I have been having the worst time since switching to levothroxine after Levoxyl was discontinued. Went from severely hyper to hypo within three weeks at same dosage. And the levothroxine itself doesn't seem to agree with me. I was on synthroid for a year w no problem but when I got the celiac dx my doctor moved me to Levoxyl. I feel like I'm losing my mind and would so love to go back to Synthroid.
  3. We just had my daughter (4) tested for celiac. The IgA came back <2 and the Immunoglobulin A, Qn, Serum came back as 119. So both negative. The genetic markers, on the other hand, are positive, Initially I thought it was two markers, DQ2 and DQ8, but the doctor explained that there are actually four variations on each, for a total of eight, and she is positive on all eight. She has never had any symptoms that we know of, but we tested her because I was diagnosed with celiac two years ago (after also being diagnosed with non-Hodgkin's Lymphoma and Thyroid Cancer) and I have a family history on my mom's side of thyroid issues. I have never had a symptom of being glutened (silent celiac?) but have been strictly gluten free since diagnosis. My daughter's doctor is strongly advocating that we put her on a gluten-free diet - arguing that with a 1:7 chance (given the markers), damage will already potentially be done by the time a diagnosis would occur. He acknowledges that there is a chance that she doesn't ever develop celiac, but still thinks this is the safe course. I'm inclined to agree, but would love to hear from anyone else with similar experiences. The whole thing is daunting to say the least. Thanks! Jess
  4. Thanks Stephanie! My daughter's doctor called this morning and said he strongly urges us to switch her to gluten free. Turns out she has all eight (when you count the sub-markers?) of the genetic markers and so he said there's a much higher likelihood of her developing celiac in her lifetime and that by the time there's a biopsy diagnosis damage will already be done. My husband and I have just started to talk about it, but given my health issues that may or may not be related to celiac, I don't think we want to risk it. It's not going to be easy - the kid likes her bread, pizza and mac and cheese!
  5. I was diagnosed with celiac two years ago. My primary doc did genetic and general celiac panel for the initial diagnosis, which was then confirmed by biopsy. I have silent celiac so I've have never had a physical symptom / reaction to gluten. I have had two types of cancer, though, and am not convinced there isn't a link. I've been entirely gluten free since diagnosis. My 4 year old daughter's pediatrician ordered blood work last month and included a test for celiac, which was negative. She did test positive, though, for both DQ2 AND DQ8. I am trying to research to find out the likelihood of her getting celiac down the road, and can't find much info. For those of you with family histories - did you keep your little one off of gluten before they were diagnosed, as a preventative measure? She doesn't have reactions and the test for celiac was negative, so I don't want to worry unnecessarily but also want to do what's best for her. Thanks! Jess
  6. Gemini - thank you SO much for such a detailed and thoughtful reply! I do feel happy with the results and will now just aim to keep plugging away. Thanks again! Jess
  7. Hi folks, I've been gluten-free since mid-February, after blood work and endoscopy confirmed Celiac. I never had symptoms (the diagnosis came accidentally), so it's been impossible to tell whether or not the gluten-free diet is working. Just had labs done, and here are the results: Deamidated Gliadin Abs, IgA 7 (previous 15) Deamidated Gliadin Abs, IgG 12 (previous 33) t-Transglutaminase (tTG) IgA <2 (previous 16) t-Transglutaminase (tTG) IgG 4 (previous 12) U/mLEndomysial Antibody IgA Negative (previous Positive) Immunoglobulin A, Qn, Serum 226 (previous 216) Doctor said he's happy that my levels are in the normal range, but I thought I read somewhere that a gluten-free diet should result in levels at zero . . . is that correct? Because I don't get sick when I eat gluten, I live in constant fear that I'm actually getting glutened through CC and don't know it. Thanks for any insight! Jess
  8. Want a pep talk? Only read below if you are ok with it being a litle harsh . . . * * * * * * Look at my signature below. I can't prove that the two cancers are related to the celiac disease, but several docs think it is very likely. And I don't have any outward symptoms, so there is nothing to keep me on track every day but the fear of more cancer. I say, stop eating gluten and consider yourself lucky that it's just been a few colds so far. And please share with your daughter. Her doctor is an idiot if he said there are false positives . . . Rare, if ever. Good luck!
  9. You've already gotten great advice and I'm a newbie myself, so I'll just add this: I was diagnosed with celiac last month and I felt fine. I didn't even know my doctor was running the test. As you can see from my signature below, though, I'm not exactly drama free when it comes to my health. Please feel free to have your wife email me if she's looking for a buddy who is new to this. It's not always easy and I'm learning of new challenges every day - my husband and I are currently trying to decide whether or not to make the entire house gluten-free (it's hard with a 2 year-old!)- but it can be done. If she wants to talk, there are lots of people available. Good luck to both of you!
  10. He's one of the best things that has ever happened to me. In fact, I trust him with my celiac issues more than the GI . . . they aren't always easy to find, but if you can find an integrative and/or "functional" medicine doctor - DO IT.
  11. Actually, he did know about it. He's a great integrative physician and is the one who discovered the celiac even though I wasn't complaining of symptoms. He suggested waiting, though - said that until my blood tests for the celiac get to negative, it will be hard to tell what's causing what. So the plan is to revisit the idea in about 6-9 months.
  12. Thanks - never heard of that. Will ask doctor about it tomorrow.
  13. As far as I know, I don't have any symptoms at all. But I do have celiac, even without the symptoms. And my oh-so-bad health history (see below) leaves me not wanting to take chances. But gluten-free is a big adjustment in and of itself, so I don't want to force myself to cut anything else out unnecessarily.
  14. It has been recommended to me that I try and determine whether or not I also have allergies to dairy, soy and corn. But it isn't clear HOW to figure it out. One nutritionist suggested cutting them all out for several months and then reintroduce them one at a time. The gastro doc I saw said it isn't necessary at all, my pcp thinks it's a good idea but is concerned that because I don't show symptoms for gluten, I won't know with the other allergens either. I'm SOOOOOO confused!! Any advice?
  15. I'm still new to this so all I know is that I need to do follow-up testing in 6 months. I plan to see a celiac specialist around that time and ask about continued testing.