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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. Luckily neither I nor my husband have ever had any negative reactions to the flu vaccine either pre-diagnosis or post diagnosis. I had the flu, oh I was around 25 when I had it. Then my husband got it from me. I tell you it purely kicked my butt from FL to Montana & back! I was young & healthy & it laid me so low it took months to get back to normal. By normal, I mean back to jogging as I had been prior. I am pushing hard on 60 now. Both of us have gotten the flu vaccine every year since that horrid bout with it. I was worried about how I would react the first time after dx and even the second year. Now I just don't worry about it. Last year we both got the shingles vaccine and no problems with that either. I was pretty worried about that one as I have dh and certainly didn't want it to flare! I am not saying that people don't get negative reactions. We are all individuals and as such, react individually. I'm just telling of my & my husbands experiences.
  2. I don't think so Raven. This is detecting the peptide in gluten not antibodies against gluten.
  3. I read about a gluten sniffing dog probably 2 years ago so I Googled it. Apparently there are several now as well as those who say they can train them. Read on my friends: I don't do Facebook but for those of you who do..... look for Elias the gluten sniffing dog
  4. I agree Gem, I would rather have a blood draw but yes, there are those who don't test positive on the serum. I don't know if Dr. Hill just screwed up when he said TTG or if that was a typo. It could easily be either. I am astounded beyond measure at the amount of typos in the professional world these days. It seems everything you read has at least a couple. The incorrect grammar is appalling! No one proofreads anymore. That's one thing when it's something casual but something entirely different when it's journalism or a professional article.
  5. It looks like it won't be too long before we have a new method of testing for dietary compliance and it appears it's going to be more accurate/sensitive than the present serum tests. At this link, there is an interview with Ivor D. Hill, MD, MB ChB; Alessio Fasano, MD. I would point you to page 4 of that. Some of you may not be able to access the linked page. You can sign up for Medscape, it's free and that's what I did, then you can access all of their articles. The following is part of what both Dr. Hill said and what Dr. Fasano said: Dr. Hill: A very interesting paper has just come out in the American Journal of Gastroenterology,[4]in which a group from Spain looked at gluten immunogenic peptides in the stool and documented that you can actually identify these in the stool. People think that, based on dietary review, they are completely gluten free. That may be something in the future that will give us a very good test, and I am excited about the possibility that we will actually be able to detect gluten immunogenic peptides in the stool and know that the patient is still being exposed, as opposed to relying on dietary review, symptoms, and TTG testing. Dr Fasano: To echo what Ivor has said, we do have a concern. The same Spanish group presented a follow-up of evidence of the robust performance of this test for immunogenic peptides in stool at the World Congress in Montreal.[5] I am as impressed as Ivor that this might be a very objective, strong way to monitor for inadvertent exposure to gluten. Here are links to the studies they are referring to and the results:
  6. I got the link fine but if I recall correctly I am a member of Medscape - I believe I just plain signed up for it - I know there isn't any fee for anything I sign up for otherwise I think very long and very hard whether it's going to be worth my money or not.
  7. There is not test for non celiac gluten sensitivity. That would not cause your numbers to be elevated.
  8. Read a WHOLE lot of threads in the dh section. There is a specific way to biopsy for dh & 95% of the time the derm does it wrong. There's a lot to be learned there. He has to keep eating gluten even for the dh biopsy.
  9. Well, that's the normal course of events for a dx. If your doc is willing to dx you based on the blood alone then great but make sure he puts it in your records so your butt is covered in future when someone questions you.
  10. Um yeah, you pretty much slam dunked it! Yes, probably they would have been higher if you'd been eating a full gluten diet but even though you were carb free for 2 months, you were probably getting all kinds of cross contamination. Make sure to read the Newbie 101 pinned at the top in our Coping section. Did the doc say anything about getting an endoscopy?
  11. Get a copy of your records. Check out the blood work that was done & check out the pathology on the biopsies. It's that simple. Did you know that over 50% of the dx'd celiacs presented with NO GI issues? Do you know there is such a thing as silent celiac where the patient has no symptoms yet there is damage to the villi? You can also ask to have the celiac serum panel run again. That will tell if your antibodies have gone down or not. If they haven't then it indicates you have not been careful enough in your diet or with cross contamination.
  12. I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then. Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has. Press the GI for 6-8 biopsies but a bare minimum of 6. {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
  13. Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx. Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned.
  14. Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
  15. I think GFinDC has some good suggestions for you & I know you don't want to hear this but I will ditto what he said about the Fasano diet. I think you need to be on it longer than 3 months. After all, in the trials he was part of, the diet was to be adhered to for 3 to 6 months. I think the majority stayed on it for around 4.5 months. Really, I think you should go back to it & do a minimum of 6 months but more likely 9 mos. to a year. I know it sucks. I know it's going to be a royal pita. But being sick is a royal pita that sucks big time. One thing you can do is to make home made bone broth. Ultra nutritious & helps heal the gut. Google how to make it. Roast the bones first though even if the recipe doesn't mention that. It will taste far better and be better. Do you have a shared kitchen? Do you EVER eat out? Do you eat ANY gluten-free processed foods? Check your meds. {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}