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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Yes, I've read numerous people who had visible inflammation. You are correct about the villi only being able to be seen with pathology but inflammation can be seen during the endoscopy IF the inflammation is enough. Many times they can't see the inflammation visibly even though there is damage to the villi. Did you go with the endo for your daughter...
  2. squirmingitch
    I am really on the fence on this one. The BIG question is........ ARE ANY OF THE DOCS WILLING TO DX HIM NOW WITHOUT A BIOPSY? If the answer is yes then I say forget the endoscopy. If not, then there are questions as to getting that dyed in the wool dx so he can have a 401 plan in school & be protected; that includes college too. The endo...
  3. squirmingitch
    So the on call doc thinks keratosis pilaris can just come up suddenly in a matter of hours. It's plugged hair follicles! Sheesh!!!!! Okay, this rash itches correct? Bilateral correct? Does she complain that it stings or burns? How long ago was she tested for celiac? Do you have the labs? Do you have the pathology report from the endoscopy? Can you post...
  4. squirmingitch
    What effect does the benadryl have on it? I take it you mean a topical benadryl since you said "apply" benadryl.
  5. squirmingitch
    I have not had the problem of writing a post & then clicking submit & the post never showing up in the forums however, I have had, in the past ?3? days where I write a post, click submit & nothing happens. I have to click on submit usually 3 times before it actually works. If people are writing posts & click submit but don't watch closely...
  6. squirmingitch
    It looks negative for celiac to me but I willingly admit I'm not great at reading those things.
  7. squirmingitch
    Ha, ha, ha, ha, ha! Now YOU gave me the chuckle! Hey, you never know....... your hubs just might find out he does a whole lot better off of gluten. It's really so much easier and wayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy less stressful (for both of you) when the household is gluten free. My hubs was not dx'd until 5 months after I was & only b/c...
  8. squirmingitch
    You need to get a dh biopsy from a derm experienced in dh. The biopsy is taken form clear skin adjacent to an active lesion NOT ON one. You would need to be actively eating gluten just like a gluten challenge & that's probably why your blood work was negative. You hadn't been eating gluten long enough so the tests are just plain invalid. See: Open...
  9. squirmingitch
    When you say "most" of your blood work came back negative. Can you be more specific? What blood tests were done & what were the results along with the reference ranges? Never, ever heard of anyone being dx'd by X-Ray with barium and air contrast. Never, ever, never. I don't think they can see that well on an X-Ray. They take biopsies & send them...
  10. squirmingitch
    Open Original Shared Link
  11. squirmingitch
    Wash the plastic filter & dirt holder on the Dyson. Just wash the OralB plastic & rubber handle with soap & water & change the head & you're good to go. I have the same toothbrush (they're great aren't they?) and it didn't kill me. Yes, about the OCD thing, at least especially in the beginning. That's normal. You'll calm down after...
  12. squirmingitch
    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...
  13. squirmingitch
    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...
  14. squirmingitch
    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.
  15. squirmingitch
    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...
  16. squirmingitch
    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...
  17. squirmingitch
    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...
  18. squirmingitch
    I agree with GFinDC!
  19. squirmingitch
    Thank you.
  20. squirmingitch
    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...
  21. squirmingitch
    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...
  22. squirmingitch
    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...
  23. squirmingitch
    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. Open Original Shared Link Open...
  24. squirmingitch
    Maybe it's a casein intolerance. Open Original Shared Link Open Original Shared Link 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...
  25. squirmingitch
    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...
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