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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. 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}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
  2. 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.
  3. 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.
  4. 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}}}}}}}}}}}}}}}}}}}}}}}}}}}
  5. The steroids can cause false negatives on both the celiac blood panel as well as the dh biopsy too. Here is the current full celiac serum 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
  6. 60% of celiacs with dh test negative on the celiac blood work. Fact. Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease.
  7. Has your derm ever done a dh biopsy? BTW, it's not taken ON a lesion, it's taken on clear skin adjacent to a fresh lesion. I bet your derm doesn't know that. I bet if you ask for a dh biopsy he will take it right on top of a lesion. Ditch him & get a derm who knows about celiac & dh & how to properly take a biopsy for it. The antibodies can stay under the skin for years. The derm is wrong. Please describe how the rash acts & what it feels like.
  8. Yes, there are other grains that have gluten but they don't have the TYPE of gluten that affects celiacs. Celaics can not have the gluten in wheat, barley, & rye. Corn has gluten but it is not the kind of gluten we react to. I actually use corn gluten in my garden as it prevents weed seeds from sprouting. LOL! Hey, it works great! Read these: Gluten is the name for the protein in grains. All grains contain protein that is theoretically gluten but people with celiac disease and most other gluten allergies only react to the form of gluten found in wheat (including spelt, kamut, triticale and all varieties of wheat), barley, and rye. From: I've run across another gluten urban legend that needs to be dispelled: the idea that people with celiac disease and non-celiac gluten sensitivity actually react to gluten in all grains, not just wheat, barley, rye and sometimes oats. This just isn't true, despite what you might have heard or read. People who react to the gluten protein found in wheat, barley and rye don't automatically need to avoid rice, corn, millet, sorghum and other grains. From: There are some unsavory sites out there in internet land that will tell you celiacs cross react to all grains. They generally have something to sell, a book, a video, some vitamins or other things. They use scare tactics to sell what they are selling. These claims simply are not true. If they were, then all the people on this site who have gotten well while not eating wheat, barley & rye but continuing to eat rice, quinoa, corn & so forth would not have gotten well; they would be dead by now & there would be no "old timers" on this site because they would have eventually died from eating grains other than wheat, barley & rye. Celiacs can develop sensitivities to other foods, even foods like cabbage or lettuce or potatoes or even rice or maybe only brown rice but that does not mean they are reacting b/c of gluten in those things. You may be doing great since eliminating rice from your diet and that is wonderful that you figured out that it affects you but that does not mean the rice contains the kind of protein that celiacs can not tolerate.
  9. I say good for you!!!! There are many skin conditions associated with celiac disease so it's not too awfully surprising about the psoriasis but the psa must be an amazing relief for you! Congrats!!!!! You might be interested in a Paleo diet. Elana's Pantry has some outstanding recipes. She has both celiac disease as well as MS.
  10. Kricket, you asked earlier about how long to try the diet. I would say give it a good 6 months and be sure not to get cross contaminated. Be very strict with it. Read our Newbie 101 pinned at the top of the Coping Section to help you learn the diet & cross contamination concerns.
  11. David, have you had the celiac blood work done? You need to have that done as well as the endoscopy. We've had a rash of people lately it seems whose docs do the endoscopy first & then the blood work after the endoscopic pathology result comes back. That's backwards especially when the patient is told to go gluten-free after the endoscopy. Like GFinDC says, you need to be eating gluten every day until all testing is finished. I second that you certainly have enough symptoms to pursue testing.
  12. Carl do you eat gluten free processed food made with rice flours? You know, cookies, crackers, cakes, breads, pastas?
  13. My question is did they specifically do biopsies looking for celiac? You need to get copies of all your health records & especially labs/pathology. They may have only done biopsies for Crohn's. When they send those to pathology they state what they're looking for & rarely does the pathologist look for anything other than what the doc has stated he thinks it might be. BTW, there is yet no test for non celiac gluten sensitivity and those who have NCGS do not test positive on the celiac serum so your high DGP IgG would be positive for celiac not NCGS.
  14. If you're sure you don't want to have kids then that's fine. I am childless by choice but didn't know I had celiac until I was 54 so it was a moot point for me by that time. So the only thing I will say now is that if you do test positive on the blood, ask your doc to dx you with celiac. If the doc refuses based on blood alone, then you can ask to have the genetic test and if that's positive then also the resolution of symptoms on gluten-free diet. There IS now, a 4 out of 5 rule for dx. Then you would have the 4 needed for a dx. And at a minimum, you can ask the doc to give you a dx of non celiac gluten intolerance. Again, you ask, why do i need an official dx if I'm not having kids? Answer...... an official dx will protect you in life. Examples: You end up in the hospital so you need gluten-free food, same with (heaven forbid!) a nursing home, follow up testing for vitamin or mineral deficiencies, for work in the case that they will have to make provisions or consider your food limitations under the Americans With Disabilities Act & you won't be forced to eat gluten in order to keep your job (dining with clients, travel for work, etc....). These considerations may become less imperative over time as more & more of the population are developing food sensitivities of one sort or another but counting your chickens before they hatch is well, counting your chickens before they hatch. I think we're going to trend to not making people show proof that they can't eat this or that but that also may be a long way off time wise so if you can cover your bases before hand then you won't have to worry it at all.
  15. Make sure to read the Newbie 101 & follow the links contained within. It will help you learn how not to get glutened.