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About squirmingitch

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    "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. Welcome to the club you never wanted to join! The good thing about this club is that you don't have to take any pills, get radiation or chemo, or stick yourself with a needle every day. Things could be much worse than this. Does your brother live close? If so he could go to your same savvy doc. That would be great! Also what about your mom?
  2. Oh you're most welcome! Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
  3. Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did? Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas? Were you eating gluten right up until the biopsy?
  4. I got them on the back side of my knees too. All the literature points out knees & elbows but doesn't mention the "behind the knee" portion of your leg. I eventually got them ON the knees itself but that was one of the last places to present. I also got them on the inside bend of my arm instead of the elbow and just like the knees, it eventually presented on my elbows. Not to be forgotten; the literature also states it can present anywhere on the body. If you found those links I've posted about how a dh biopsy is done correctly then print them out & take them with you to SHOW them. Any derm should be able to follow the directions or they should turn in their license. As to them saying herpes, well duhhhhhhhhhhhhhhhhhhhh, dh does have a herpes like presentation. That's why they call it dermatitis herpetiformis! Remember, they work for YOU, not the other way around. Insist. Make sure you're still eating gluten. Let us know how it goes. The best of luck to you!
  5. DH can look like that but other things can as well. It would help if you described the way it acts/presents. You can get a dh biopsy. Read threads in this section to find out how the biopsy is done correctly.
  6. Anxiety is quite a common symptom with undiagnosed celiacs. It should improve if not disappear when you go gluten free. Be sure to CONTINUE eating gluten until the endoscopy! Welcome to the club!
  7. This just published: Highlights • Kernel-based gluten contamination in oats skews gluten analysis results. • Grinding inadequately disperses gluten to allow a single accurate analysis. • Lognormal distribution of the test results renders a single test unrepresentative. Abstract Oats are easily contaminated with gluten-rich kernels of wheat, rye and barley. These contaminants are like gluten ‘pills’, shown here to skew gluten analysis results. Using R-Biopharm R5 ELISA, we quantified gluten in gluten-free oatmeal servings from an in-market survey. For samples with a 5–20 ppm reading on a first test, replicate analyses provided results ranging <5 ppm to >160 ppm. This suggests sample grinding may inadequately disperse gluten to allow a single accurate gluten assessment. To ascertain this, and characterize the distribution of 0.25-g gluten test results for kernel contaminated oats, twelve 50 g samples of pure oats, each spiked with a wheat kernel, showed that 0.25 g test results followed log-normal-like distributions. With this, we estimate probabilities of mis-assessment for a ‘single measure/sample’ relative to the <20 ppm regulatory threshold, and derive an equation relating the probability of mis-assessment to sample average gluten content. The full article can be accessed at Gluten Free Watchdog if are a subscriber.
  8. This is the 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 You will want the GI to do the full panel on her ESPECIALLY if you're not going to do an endoscopy. I understand in Canada it can be months, like 6 months or more to get an endoscopy. That may be different in different provinces, I'm not sure, but have had Canadians on here who had LONG waits. You have to keep her on gluten until ALL testing is done. It's not a good idea to go off gluten & then go back on it because the vast majority of celiacs have far stronger reactions when they resume eating gluten after having been off it. This is also why I would not recommend you, hubby & son trying the gluten-free diet & then going back on it as a test. Best to get the full panel done on everyone. You will need to do that periodically (every 2 yrs.) because celiac can present at any age. While you're waiting for the GI appt., you can read our Newbie 101 located in the coping section to acquaint yourself with "the new rules" your daughter will have to live by and how to keep her safe from cross contamination. The gluten free diet carries a steep learning curve so you might as well start learning what to do and begin preparing your kitchen so you will be ready to go when the time comes instead of scrambling to replace kitchen items as well as learn the diet rules.
  9. My dog was gluten free long before I ever knew there was such a thing as celiac disease; actually since the day she entered our house @ 9 weeks of age. People might argue the point with me but there are a lot of others out there who will agree wholeheartedly (including many dog breeders) that dogs are essentially allergic to wheat, corn & soy - especially the glutens in them. Since discovering I & my hubs (yes really, it does happen - probably because of awareness) have celiac, we have taken the dog grain free. Truthfully, about 2 years ago I began feeding her a raw diet. It sounds complicated but believe me, it's far easier than searching for the right kibble when companies change ownership & new owners get greedy & change formulations. My dog has NEVER been more healthy than she is now! Try one little trick please. Put a big dollop of plain yogurt in your dogs food every morning. Give it time to see the results.
  10. NightSky, I am wondering if you might have a wheat allergy. I'm not saying you don't have a problem with gluten - please understand that. What I'm saying is that it's possible to have celiac AND a wheat allergy concurrently. I am so sorry you're feeling so rotten awful! I agree that a GOOD doc is in order here and I know you've said you're going to pursue that course. I think you've been given some really helpful feedback and suggestions here. We all know how difficult it can be though to trace down the cause of some of our problems. It can be simply maddening! Personally, I think the Fasano diet is a real starting point for you & a great idea. This will allow you to better pinpoint any foods that affect you when you begin adding them back into your diet. It's a way of working forward rather than trying to backtrack. Backtracking will make you crazy.
  11. Hi, Honestly, it's better if you get the biopsy so you can always pull it out & stick it in some docs face when they don't believe you have celiac. You will also find more support from friends and family (& help to get your brother to get tested). That is if you are not afraid of the biopsy process. In life, we never truly know when we might move to another area or heaven forbid, this savvy celiac doc should pass away. If you have the biopsy to back up the blood work then you shan't ever have problems with other docs or people taking you seriously. Having said that, it's totally up to you. I don't know your age so don't know if you might have children someday. Emma on the thread you linked is I think 25?? but doesn't have kids. She's failed to consider that she is still young & didn't state that she never plans on having kids. Just try to consider what the future may bring in your life when you make your decision.
  12. You might want to check out the Gluten Free Watchdog - just google it - and join. Very smart lady there who also has celiac disease. She's gone to the mats for us many times. She knows her stuff! 8 products are tested per month and there are many great articles and videos as well. She's the same lady who does the Gluten Free Dietician but on the Watchdog site, you get the test results of products as well as faster info. on breaking news.
  13. It makes no difference. If she won't wash her hands with soap & water before she eats then whatever she touches & then eats is like she's eating whatever she touched. Purell will NOT get rid of gluten! Purell is a sanitizer NOT a wash. You can't kill gluten, you can only wash it off. I It will not matter if the Purell is wet or dry, she will still have gluten hands if she touched gluten.
  14. I also agree with Gemini & all she said. I only have one caveat. Do you have kids? If you don't get an endoscopy these a&&$@!e docs are not going to give you an official dx. IF you have kids, especially young ones still living at home, then you need to get a dx for their sakes. All first degree relatives should be tested every 2 years. Celiac is a genetically predisposed disease. If you have an official dx then it will be MUCH easier to get your kids tested - you won't have to fight so hard for it - and it's really important that IF they present with celiac you get them an official dx for protection in school, college & so forth. If this is not a concern for you then get on the strict diet starting right now. Read our Newbie 101 in the coping section. Welcome to the club!
  15. You could request an EMA blood test. The EMA is specific to celiac disease & a slam dunk especially when combined with your over the top positives that you've already had. See: In addition you can request a gene test to see if you have the genetics that predispose one to celiac disease. The genetic test is not really used to dx celiac but rather to rule it out. And then there is the 4 out of 5 rule: