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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. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. Carl do you eat gluten free processed food made with rice flours? You know, cookies, crackers, cakes, breads, pastas?
  8. 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.
  9. 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.
  10. Make sure to read the Newbie 101 & follow the links contained within. It will help you learn how not to get glutened.
  11. Here's the current full celiac 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 The TOTAL IgA MUST be done to see if you are IgA deficient. If one is IgA deficient then the IgA tests are not reliable for that person. I would urge you if you test positive, to do an endoscopy. Reason being is that you are young and will likely want to have children in future. Celiac is genetic so if you are celiac & have kids, they will need to be tested every 2 years. If you are dx'd celiac "officially" it will be MUCH easier to get your kids tested. It's highly unlikely that you will get an "official" dx without a positive endoscopic biopsy. The endoscopy is easy. Fast after midnight, procedure doesn't take long, OP procedure.
  12. Meg, which test of the full panel didn't she run? Did she say or did you ask why? Did it have to do with your insurance? I know some but not all, insurance will only allow a GI doc to run the full panel - if that is the case with yours, then if your blood comes back negative, I would request a referral to a GI who specializes in celiac.
  13. It doesn't matter if you urp it up because the moment it goes into your system it starts the immune reaction. The pasta doesn't have to sit in your stomach for a given period of time in order to make your system react. There are no better or worse gluten containing foods but you don't have to eat a bowl of pasta every day. A 1/2 slice of bread or a cracker (cookie? to you Brits?) each day should do the trick. For that matter, you could have a cookie or a cracker or a biscuit. You don't have to include gluten in every meal -- just once a day is good enough. Hang in there! {{{{{{{{{{{{{{{{{{{RACHEL}}}}}}}}}}}}}}}}}}}}
  14. That's correct Mark. It was the darndest thing to run across it & it was on reliable medical sites, not just some yayhoo writing an article. It was so weird because in all the research I've done about dh, this was the first time I had run across anything describing that & associating it with dh. I wish I had bookmarked it but I was researching some stuff to take to the doc at an appointment plus Hurricane Matthew was barreling at us so I had my hands really full at the time prepping for both events. In all my time on this site, I've only read 1 or 2 people who mentioned having anything like that. Now this is something that's just curious & one day when I have time (ha-ha), I'm going to try to research -- my PCP took my hands & turned them palms up & showed them to the nurse. He was pointing out the coloration. The underside of my hands have always, as long as I can remember, been a rosy color. He said that is indicative of celiac. I have never, ever, never come across anything even remotely alluding to that in anything I've read but he seemed to be very adamant that it is so. I looked at my husbands hands and his are the same - he also has celiac. I know that mine are always that color no matter the temperature or time of year. Hot, cold, moderate, they are always that color. So I dunno. One day I'll try to find references to it.