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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.


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squirmingitch last won the day on January 8

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  1. Great to hear RNinGA!!!
  2. Great, perfect reply jmg!
  3. Hi Mary Anne, I'm going to repeat.... Do not give up eating gluten until all testing is completed!!!!!! 60% of those with dh test negative on the blood tests yet we do have the intestinal damage. It tends to be patchier in us though. We tend to have milder, fewer GI issues than celiacs who don't have dh. A dh biopsy, as you have read on here, is taken on clear skin adjacent to an active lesion. Yes, dh can go away (stop itching) in 2 weeks of gluten free orrrrrrrrrrrrrrrrrrrrrrrrrrr it might take years. DH can come & go at any time, even if you're eating gluten -- it waxes & wanes; that is until the day it decides to stay & make every hour & day & month of your life miserable. Not everyone gets the stinging or burning or maybe I should say not everyone at every stage. A dx of dh IS a dx of celiac & no further testing is needed.
  4. This sucks., You may be going through gluten withdrawal. It does exist and many (most) of us went through it for varying lengths of time & to varying degrees of severity. Just use the Google search box for this site & you will come up with hundreds of threads on the subject. Personally, I went through it for about 2 months. Lots of people only go through it for one or two weeks. Are you sure all those supplements you're taking are gluten free? Supplements like what you're taking are not regulated you know. Please read the Newbie 101 pinned to the top of the Coping forum and your mom might want to read it too so you guys can protect yourselves from cross contamination. Personally, and you can disagree with my opinion, I would not be taking allllllllllllllllllllllllllllllll the stuff you listed. That's a LONG list! I believe one needs to be cautious & very careful taking a whole bunch of supplements (even if they are "natural"). One supplement reacts with another supplement & yadda, yadda, yadda...... IMO simple is best and getting the vitamins & minerals from foods is the best way to go. Otherwise you can get so tangled up in your shoelaces that you can't figure out what is causing this, what is making you feel that, and so on & so forth.
  5. This is what you'll have to do if you go off gluten prior to blood testing or endoscopy. Even though you had the test years ago, celiac disease can present at any time so just b/c you were negative then doesn't mean you will be negative now. Besides that, we don't know what tests you had back then -- the full panel or not. Here 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
  6. Ah yes, the ranting & raving, the this CAN'T be ME! The WTF????!!!! The you've GOT to be kidding me!!!! I think we've all been there to one degree or another in the beginning. {{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}} We're here to listen to your rants & raves, to your crying fits, have pity parties with you and celebrate when you make progress. Have you had any crying jag meltdowns at the grocery store yet? Put it on your to-do list. Most of us have had several of those when we started out. Oh yeh, & the feeling of wanting to kick someone (gluten eaters) in the face when they give you that freaking little speech about how lucky you are that there are sooooooooooooo many gluten free foods on the market these days. When that happens, try to remember they have no clue that many of those options are not on the table for you/us b/c of other food intolerances and things like your gastric sleeve. If you try to explain it to most of them, they still won't "get it". Only your closest, truest friends will be willing to hang in there and listen & actually hear & absorb what you're saying. I was able to keep dairy however, I did go off it for a year in an effort to limit my iodine intake because of dh. You may wish to go low iodine for 2 weeks to see if it won't help that settle down. Go to & click on low iodine diet. Also, some who can't do full dairy certainly can tolerate certain dairy such as yogurt and aged cheeses (the harder cheeses). The anger...... Gluten affects your brain, your hormones, everything. I was never an angry person until......the latter years. Rage is a better word. I & doctors thought it was menopause related. Well maybe some but some was certainly gluten. Then there was the rage spurred by gluten withdrawal. Then I went back to "regular rage" (ha, ha) that was the lingering effects of what gluten had done to my mind & body functions. I am happy to say all that madness has gone; however, anger/rage is a big signal to me when I've been cross contaminated. NSAID's make the rash worse -- ramp it up but Tylenol seems to be okay so if you have to take anything, Tylenol would be the go to med. I agree with the others that once you've gotten some healing under your belt, a LOT of the problems you've been experiencing may very well improve & even disappear. Almost all of us have had revelations of problems resolving that we never imagined were related to gluten damage. Keep a food & symptom log. It can be invaluable to identifying foods or ingredients that don't agree with you. You say steak is easier on you then by all means eat steak! The way my hubs & I figure it, we might as well spend money on the best cuts & enjoy the heck out of them since there are many foods we can't enjoy any longer. Tenderloins and Rib Eyes comprise most of our beef expenditures. BTW, I suffered with killer migraines for 25+ years. They were so severe that my doc prescribed me Immitrex injectibles & I would give myself the shots. Worked great & FAST! I've been gluten-free for 5 years & couldn't tell you the last time I had a migraine ~~~ it was probably sometime during the first year of gluten free. I am thrilled!!!!
  7. MEAT! Have steak & eggs for breakfast & make sure you have some good fat with the protein --- butter, olive oil, coconut oil are all good fats or even the fat on the steak. Split pea soup is good protein, dried beans are good protein.
  8. Sounds like gluten withdrawal to me. You could go to your Primary care doc & get normal labs run & bp taken etc... just to check on those possibilities as well as get some vitamin & mineral levels checked out. Doing that would make you more sure/comfortable with the likelihood it's gluten withdrawal. Everyone is different so how long it will last for you is not something we can tell you. Mine actually lasted about 2 months. Some get over it in a week, 2 weeks, a month --- it all depends. You do know all first degree family members should be tested every 2 years in the absence of symptoms & immediately if symptoms present since this is a genetic disease. Please see our Newbie 101:
  9. UGH! I'm so sorry this has happened. I hope you recover quickly and find the source of the trouble.
  10. Do you guys have OreIda up there? Here in the US they are gluten-free.
  11. Stacy, maybe it IS the probiotics themselves. Not so long ago a study was done which found some that weren't gluten free even though they were supposed to be. How about eating yogurt?
  12. Add to the above that you have a celiac gene.
  13. Nooooooooooooooooooooooooooooo, you misunderstand. You MUST eat gluten every day for a minimum of 2 weeks prior to an endoscopy!!!!!!!! If you stay gluten free then you will walk away with no diagnosis.
  14. FritoLay gluten free list for the US: Very trusted company by us Celiacs: they have nut butters too Planters is a Kraft product -- Kraft is quite trusted by us. They will always label any gluten and further label any manufacturing info. that might cause a problem such as shared lines.
  15. As previously stated the H means it's a high reading aka above normal aka positive. Colonoscopy is NOT a way to dx celiac or even to check for it. Endoscopy taking 4-6 biopsies, preferably minimum of 6 is the gold standard for dx when combined with positive blood which you have. A colonoscopy will tell you nothing about celiac. Find a celiac savvy GI specialist. AND...... Imperative!!!!! Do NOT STOP eating gluten until after the endoscopy or you will get a false negative. You don't need to eat a ton of gluten every day but you do need to eat some every day. 1 slice of gluten bread each day should do it.