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squirmingitch

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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. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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!
  8. 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: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis
  9. If I had a dollar for every time I've read a celiac say they have (or did have) belly looks 7 mo pregnant, get sick after they eat, headaches, stomach pain, nausea, vomiting, joint pain, emotional changes, severe fatigue and weakness, then I would be rich! There are many more common symptoms that many had (or have). Personally, I could add to that list; gas, belching, make the headaches migraines, dizzy, brain fog, bone pain, swelling, severe memory problems just to name a few.
  10. What country are you in? I can't make heads or tails of this test the way it was written. I don't understand it at all.
  11. Hang in there mom! It will soon be over. Just stay strong. The anemia fits right in.
  12. SickInChicago, Let's make sure you're not getting any cross contamination. Read this thread & follow the links contained within it. And this one too: I am so sorry to hear that your first doc who did the tests when you were 10 was a complete dumbass as to tell you it was a false positive. There are actually very, very few false positives. False negatives are much more common but false positives are very rare. That doc cost you 20 years of pain not to mention the money for the ER visits. So yes, for 20 years you have been eating gluten & poisoning yourself. It's going to take a while for your guts to heal - maybe years. Be kind & gentle to yourself. Try only eating whole foods that are well cooked. That means mushy veggies & fruits as well. Bone broth is great for healing the gut as well as being very, very easy on your gut and packed with nourishment but you have to make it yourself not buy it b/c it's not the same thing as when you make it. Here's a recipe: http://wellnessmama.com/5888/how-to-make-bone-broth/ And here's how to do it right or mistakes not to make: http://www.bonappetit.com/test-kitchen/common-mistakes/article/common-mistakes-bone-broth
  13. Doctors are not going to check out whether your prescription contains gluten. They are doctors not pharmacists. They can't possibly know which manufacturer your pharmacy carries of any given medication therefore they can't possibly know if what you're going to get is gluten free. You need to ask the pharmacist where you are filling the script to check & make sure it's gluten free. I do that and my particular pharmacy is super good about checking BUT I STILL double check & call the manufacturer myself!!!
  14. Awwwwwwwwww sweetie, you're SO welcome!
  15. It's really too bad that we can't trust our parents and we know they wouldn't hurt us for the world but look how hard it is for us to get all the rules down pat. It's even harder for them! My mom is gone but were she alive there's not a chance in heck that I would trust anything at her house and not because she wasn't great with hygiene but the rules are so complicated.