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squirmingitch

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squirmingitch last won the day on November 27

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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. 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 is really no big deal having it done. Plenty have come on worried as heck & then their kid has it & it was a piece of cake. Read some in the Kids section http://www.celiac.com/gluten-free/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/
  2. 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 those here please? Make sure to include the reference ranges for the blood work. How long have you had her gluten free? How old is she? 60% of the time those with dh test negative on the blood work. Those with dh also tend to have patchier damage in the gut. The small intestine, when flayed open & spread out, is the size of a tennis court. Biopsies can miss the "sweet spots" especially in the case of patchy damage & certainly if they don't take enough biopsies. The recommendation is 4-6. Also, depending on your daughters age, she just plain might not have had enough damage yet to show. Yes, it sucks. They want people to keep eating gluten & do more damage so they can see it. Great - NOT! You need to find a derm knowledgable in dh and taking the biopsies for dh. If one has dh, that's the fastest, best, way to a dx. A dx of dh IS a dx of celiac disease and no further testing is needed. The downside is, just like for the celiac serum panel & the endoscopy, she needs to be eating gluten (gluten challenge) for a dh biopsy or risk a false negative. http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ http://www.cureceliacdisease.org/faq/how-quickly-do-symptoms-arise-in-someone-with-dermatitis-herpetiformis-once-gluten-is-ingested/ http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/ How the dh biopsy is done: https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
  3. What effect does the benadryl have on it? I take it you mean a topical benadryl since you said "apply" benadryl.
  4. 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 to make sure it actually submits & go zipping off to do another post assuming their previous post will submit then they might think posts are going missing.
  5. It looks negative for celiac to me but I willingly admit I'm not great at reading those things.
  6. 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 I then knew the signs & symptoms - he was in denial for at least 2 months -- just like a man eh? Yes, it actually does happen! Matter of fact, there are 2 of us on here presently whose spouses are celiac. For that 5 months though, we were both so edgy. I was worried about not getting cc'd and he was terrified he would cc me. What a relief when we took the entire house gluten free. Like you, no kids at home, just the 2 of us. BTW, while I'm thinking about it, all first degree relatives need to be tested every 2 years in the absence of symptoms and immediately if symptoms present.
  7. 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: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/
  8. 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 to pathology in order to be able to see the villi. Is this a GI doc who did this? In this in the US?
  9. http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/
  10. 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 a while & you get more sure of yourself. I still recall something an old timer posted when I was still rather new. I think it might have been GFinDC who said it. Something to the effect of for the first 6 months to a year everyone we see we see them as having celiac and we think all the wheat fields should be burned. LOL! It's true! Actually, even though I know better now, I still have daydreams about burning all the wheat fields. What happy daydreams! Oh but kissing gluten eaters! Now that's another story altogether. NO kissing hubs if he's eaten or drank gluten until he's brushed his teeth well.
  11. 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?
  12. 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.
  13. 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.
  14. 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.
  15. 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.