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squirmingitch

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About squirmingitch

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    Female
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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. 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!
  2. I agree with GFinDC!
  3. So you use Hunts tomato products? Which ones? (diced, paste, sauce?)

    1. squirmingitch

      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.

  4. 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.
  5. 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.
  6. 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
  7. 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. http://www.glutenfreedietitian.com https://www.glutenfreewatchdog.org
  8. Maybe it's a casein intolerance. http://www.breakingtheviciouscycle.info/knowledge_base/detail/casein-sensitivity/ http://healthyeating.sfgate.com/casein-protein-intolerance-2028.html 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.
  9. 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.
  10. You're welcome. Yep, just get used to expecting this to be wonky for a while. It's too early to say how sensitive you are just yet. However, be kind to your poor old gut & stay on the bland side of foods rather than going for things like tomato sauce & hot peppers & such as that. Corn is tough to digest too so you might want to steer clear of that for a while.
  11. Dishes are okay. You said they've been washed so no worries. Stainless pots & pans are okay too as long as they were scrubbed real well so no residue remains. Scratched teflon has to go! Get new. No wooden spoons left over from gluten days -- ditch them & get new. New colander/strainers, new cutting board. You could be having gluten withdrawal or it really could be the sauce. Tomatoes are so acid and your tummy is damaged yet so it's hard to say at this particular point. Try to stick with more gentle foods for a while. Easy to digest stuff. McCormick spices are fine as long as you don't get blends. Pure spices are just that - noting added or it will say so on the label. Finally, the first 6 months can be a roller coaster with good days/weeks & bad days/weeks. This is why it's really important to not eat out. That way you don't wonder if you got glutened at a restaurant.
  12. Good ideas ironictruth has there. I will only add to search for people who have food allergies. They should understand.
  13. Hi & welcome to where you never knew you didn't want to be. You most certainly should get dh biopsies! From reading what you wrote, you've done your homework. Hallelujah! It's so nice when people have done some research. Good girl for not taking the prednisone. Yay! The doxy is okay to take. You know to keep eating the horrid gluten until testing is over. Just a reminder. My opinion is not to let the doc explore his ideas. Just state right off what you suspect and be firm in telling him you want to be tested. You read that 60% of those with dh test negative on the serum panel? Still, it won't hurt to get it done. INSIST on the FULL panel though. 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 If he won't order it, can you go to where your NP friend works? She can order the blood work. Can you also get her to do some checking around to find a derm that is actually experienced in dh & doing a dh biopsy? That would be your best bet. You need to really do your best to find a derm who has that experience. If you can't find one then you're going to have to be intractable when you go & tell them they have to prove it's NOT dh by doing a proper biopsy & then if it turns up negative, you will try their meds & consider it's what they say it is. Make sure to run down the list of your celiac symptoms to both the PCP and the derm and also tell them the doc at the urgent care said it could definitely be dh & said you need a dh biopsy done.