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About squirmingitch

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    Gardening, birds, bees, butterflies and nature in general. Nature is a genius!
    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. No, they do not. What you had done was the gene test and you do have DQ8 which is one of them. But about a third of the population has those genes but the vast majority will never present with celiac. The gene test is really used to rule OUT celiac rather than to diagnose celiac. You need to have the celiac blood panel done & YOU MUST BE ACTIVELY EATING A GLUTEN DIET FOR ALL TESTING INCLUDING A SUBSEQUENT ENDOSCOPY or you will get false negatives. Here's the blood panel: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA Total Serum IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Your PCP or any doc can order the labs for you. If the blood work comes back with even 1 positive, then you get sent for an endoscopy where they take 4-6 biopsies & if those are positive then you are pronounced celiac. What are your symptoms and who ordered the gene test for you?
  2. Ask your boys if they enjoy having a mother. Ask them if they would rather have a dead mom so they can eat gluten or a live, healthy mom & they can still eat gluten; just not in the house. Ask them if that sounds selfish and who is/are being the selfish one/s. They can have gluten at school, they can have gluten cookies & snacks, they can have gluten at restaurants and at their dads house or friends homes. YOU need a safe kitchen for YOU. Tell your boys that one or all of them may present with celiac and they will be forced to eat gluten free for life so they should not judge lest they be judged. Celiac is a genetic disease and your boys should be tested every 2 years in the absence of symptoms & immediately if symptoms present. That applies to all first degree relatives so your parents, siblings are on that list. Please read our Newbie 101 Boy, you sure got screwed on the testing didn't you? If only they had told you BEFORE you got tested that you have to be eating gluten or you get false negatives. I'm so sorry that all happened to you! Unfortunately it's an all too common story. Welcome to the club.
  3. So far, (crossing my fingers) I haven't had any problems. What browser are you all using? I'm on safari. I did see gluten-free's double topic post before Karen hid it. I haven't paid any attention to weekly post counts lately but so far, none of my posts have gone missing.
  4. How long have you been gluten free? How many years ago did your doc tell you to stay off gluten? I'm just wondering because it's not clear in your original post. Have you been gluten-free for 4 years? You say for 3 out of 4 years the IgA has come back positive. Which year was it negative? For an endoscopy you have to eat gluten every day for 2 weeks.
  5. Yes, I've seen many people report fevers before diagnosis. I personally didn't have any & I'm sure about that because I very often "felt" like I had a fever so would take my temp. & all was normal but you can use the search box on the site here & find many, many people saying they had fevers. I think you could very well be correct in your hypotheses about your son.
  6. Hi Kimbercup, DH is a weird bird. It can come & go seemingly at will as if it has a mind of it's own. It can present whether you're eating gluten or gluten free. The antibodies get deposited under the skin like little land mines just waiting for something to set them off. A dx of dh IS a dx of celiac. DH is the skin form of celiac disease. Yes, the genes are the same since the disease is the same. I wouldn't put too awful much stock in the gene test you had since there are actual cases of people not having "the celiac genes" yet certainly DO have celiac -- blood & biopsy proven. Generally, with dh, the gut damage is patchier than with "regular" celiacs and 60% of us with dh test negative on the celiac serum panel. DH can "go away" for years; and it can come right back too. There is a non celiac sensitivity to gluten. It is called non celiac gluten intolerance (NCGI) or sensitivity (NCGS). At this time, there is no test for it. One can also have a wheat allergy AND also have celiac disease so both can run concurrently. I am SO glad the GI ordered an endoscopy right away!!!! You really do sound like a prime celiac candidate. If your biopsies come back positive then all first degree relatives will need to be tested every 2 years in the absence of symptoms and immediately if symptoms present but they MUST be eating a gluten diet for testing. If they have been gluten-free or gluten light, they will need to eat gluten every single day fro 12 weeks before the serum panel. The good news is that when you go gluten free a lot of those symptoms and food intolerances you now have will go away. Not immediately but in time. Maybe all of them will resolve. You will need to heal fully before you'll know and even then it can be a few years for some of the worst symptoms BUT healing DOES happen, it really does! I want to hear one day that you ate chicken and were just fine afterwards!
  7. I agree with GFinDC!
  8. So you use Hunts tomato products? Which ones? (diced, paste, sauce?)

    1. squirmingitch


      All of them. Diced, paste, sauce. No problems. Hunt's is a ConAgra product. ConAgra will always clearly declare any gluten ingredients. They are a very trusted company among the celiac community.

      The same goes for Kraft. Kraft will always clearly declare gluten ingredients & is also a very trusted company among the celiac community.

  9. You could do yogurt and also hard cheeses (aged cheeses). Generally those are tolerated b/c they don't have the lactose issues of the rest of dairy. Also, you could, for now, try Lactaid Milk. It tastes a little different but you'll get used to it quickly. It's lactose free. I am a dairy lover too & I did over a year without dairy. It was HARD. I did that not b/c I had a problem with lactose or casein but because I have dh (the celiac rash) & dairy is high in iodine which makes the rash worse.
  10. I'm probably not the best person to answer that question as I never had a problem with dairy from day 1. Others will be along to help with that I'm sure. I did however, have a problem with soy in the beginning but I can do soy now. I just prefer not to have soy so tend to bypass it if possible. It's just my opinion but I don't think soy is good for us. I don't think it will kill us, I just prefer to stay away from it most of the time. I'm thrilled you're finding things to eat that work well for you. That's great! Keep on keeping on then and I agree with your GI on not restricting your diet too much. I just thought you might get freaky wondering if you got glutened or if it was "just normal" for now.
  11. This is why we say to stick with whole foods too. If you stick with whole foods, you don't have to worry about if you got glutened or not. Maybe even go so far as the Fasano Gluten Contamination Elimination Diet. If you follow that, there is no way you have to worry about the slightest chance of gluten cross contamination. I only recommend this to you in particular b/c I am aware of your anxiety and know how much it will plague you wondering if you got into something you shouldn't have. You can even make your own mayo -- it's just egg, oil & lemon juice - lasts a week. See, there are ways to have things so you don't feel deprived. Here's the diet: Table 1 Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination Allowed Not allowed Grains Plain, unflavored, brown and white rice Millet, sorghum, buckwheat or other inherently gluten-free grains, seeds, or flours Fruits/Vegetables All fresh fruits/vegetables Frozen, canned or dried Proteins Fresh meats Lunch meats Fresh fish Ham, bacon Eggs Other processed, self-basted or cured meat products Dried beans Unseasoned nuts in the shell Dairy Butter, yogurt (unflavored), milk (unflavored), aged cheeses Seasoned or flavored dairy products Processed cheeses Condiments Oils, vinegar, honey, salt Flavored and malt vinegars Beverages 100% fruit/vegetable Gluten-free supplemental formulas Gatorade, milk, water
  12. Yep. Even longer than 3 weeks. Also, there are 2 sites I think you will find quite helpful. Both are by the same person, Tricia Thompson MS, RD. She's brilliant and has celiac herself. The first, The Gluten Free Dietician, is free and the second, The Gluten Free Watchdog, is $5 a month. Well worth it in my opinion.
  13. Maybe it's a casein intolerance. Check out the ingredients on the Kale chips. Is there any milk protein in them? Do you have a problem with butter? Or is is it milk & yogurt? Also, the Kale Chips & the yogurt may not have anything in common but you might have sensitivities to each individually.
  14. By saying he's going to be tested, what kind of testing? Celiac blood panel or endoscopy? Good for you being persistent & getting the doctor to agree to test him! It's awful that we have to go to those lengths but I'm very glad you stuck with it and didn't let it slide. As to the other 2 kids, do they show any symptoms? I would wait to make a decision based on what the testing for your son comes back as.