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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. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About Foolish_Michie

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  • Gender Female
  • Interests getting well ;-)
  • Location Cape Town, South Africa & Chapel Hill, NC
  1. Back when I still thought I could eat things with corn and rice, I opted against trying Amy's because while the pizza may be gluten free the facility it is made in is not.
  2.   Again, based on my understanding of the theory, it is entirely dependent on the specific antibodies your body has developed.   Honestly, read the link. It is fascinating.   I've taken too much space on this thread Sorry. I'll leave you all alone now.
  3.   I understand what you are saying and this is a controversial subject. The theory makes sense, however, and understanding it has helped me significantly. And it is important to note that not everyone with celiac reacts to foods other than the standard gluten ones. We probably see a higher percentage here because you have to be pretty desperate to spend a lot of time on a disease forum looking for answers.   Personally, I'm not interested in going the Cryex or Eurolab route and I have no idea how accurate the tests are. I don't need a lab test to tell me that my forbidden list includes corn, soy, rice and nightshades. And I certainly don't need to spend a small fortune to know that I have yet to find a 'gluten free' product on the shelf that didn't make me sick.   Anyway, beyond the accuracy of lab tests, the following info might prove useful for some. I still prefer the way it is explained by the link provided above.
  4. That blogger is an award winning Phd who spent the majority of her professional life in medical research.
  5. I'm posting late to this thread but the topic is important so am adding my thoughts just in case it helps someone else in the future.   As I understand it, the theory behind cross reactivity (and yes, scientific research is beginning to document the problem, specifically regarding corn) is pretty basic. While a gluten protein chain is long and contains many segments, only short sub-segments (as small as three links in the chain) are recognized as toxic. Those same short segment sequences occur in other the protein chains of other foods as well and, for some, the body will also start to react to them because it doesn't distinguish one food from another, just one sequence in the chain from another.   The issue is complicated by the fact that the body isn't always reacting to a single segment of the chain. It is possible to develop multiple sensitivities along the chain. Again as I understand it, cross reactivity is totally based on the specific antigens your body has developed. The fewer, the better, obviously.   I, personally, cannot tolerate any of the 'gluten free' products on the shelves. And, yes, it is depressing.   PaleoMom gives the best explanation I have seen so far:        
  6. Aaaaargh! Et Tu Corn? Am So Depressed.

      Part of me wishes I could just get a PICC line and stop eating altogether :-)   Who knows, maybe the DH is from accidental glutening. It takes so little. I'm considering going to stay elsewhere because I have no control over the kitchen here and fingers are constantly dipping into gluten-heavy products and then touching everything. Maybe I forgot to scrub my hands after feeding the kitty her daily treats? Maybe someone used my cutting board? Maybe the frying pan I used had a scratch I didn't see? Maybe I used a fork that had been washed with a glutened sponge instead of in the dishwasher? Ugh. EXHAUSTING.   A few Metagenics vitamins are gluten free and corn protein free. As a last resort, I can switch over to their liquid D3, vita C and probiotics. I'm going to switch over to farmer's markets for all of my fruit and veg and call a local beef farm (grass fed) about ordering direct and being specific about the fact that I can have no corn.   Thank goodness it is Sunday because I am just so darned tired I can hardly keep my eyes open.
  7. I. Can't. Stand. This.   After counting myself lucky that amidst all of my terrible celiac symptoms at least I didn't have DH, I now do. And I think it is because of gluten free corn chips (Glutino).   I have long suspected that a corn allergy is also at play - largely because within 30 minutes of eating popcorn I pass out cold for hours. I tried several varieties of gluten free pizza all of which had corn starch if not a corn base, and felt terrible each time. And then, because I am a moron, I decided to eat the corn chips (even though I knew it was a bad idea). Three days later, I'm still exhausted and dopey and my back is covered with a lovely, itchy, want to tear my skin off rash.   So, corn is obviously now out but I'm concerned about all of the places it hides. By the time my celiac was diagnosed, I had become pretty severely vitamin deficient so am on megadoses of supplements to try to correct the problem. I've emailed all of my vitamin manufacturers because corn isn't labeled as clearly as other allergens but would also love some feedback from others in the same boat. Any great brands you can recommend and/or what else do I need to be on the lookout for?   Needless to say, I'm throwing myself a massive pity party at the moment. It has been two and a half months since we figured out what was killing me and while I definitely no longer feel death sitting on my shoulder, I also don't feel anywhere close to well. In addition to the corn exposure, I'm also worried that I might be having some cross contamination exposure. Having just been forced to leave my home overseas because of this disease, I'm staying with friends who seem to eat nothing but gluten. They don't cook so there are no loose flour particles floating around but maybe I'm getting poisoned all the same. I take a lot of precautions but touch things like refrigerator door handles after them all the time. Am I taking too big of a risk staying here?   Sob.
  8. Do you remember how long this went on before the good days started consistently outnumbering the bad?
  9. Newbie Saying Hello

    After daily lurking, I've finally decided that being lonely with my AI issues is silly. So this marks my official move from 'Guest' to actual entity with a profile pic and everything. Before I introduce myself, I want to say thank you for being such a great resource over the last several months! My adjustment would have been far more difficult if I hadn't been able to call on the experience of the many who are active here.   My story is, I suspect, fairly typical.   About three and a half years ago, my health started to deteriorate but I didn't see it for what it was because there was no obvious connection between the varying problems. One month my ankles would swell alarmingly and pain in my foot joints would make walking excruciating. The next month, I would get heart palpitations and shortness of breath. Then, a sharp pain around my right kidney/adrenal area came along and I suddenly needed to pee 60 times a day for weeks on end. Ultrasounds showed that my kidneys were fine and a bladder biopsy showed the same. Malaise, brain fog spells and difficulty concentrating followed and menstrual periods became so infrequent that I wrote everything off to early menopause.   Within a year, de-pigmented patches of skin started appearing on my torso and coping with the extreme stress on my plate became more and more difficult. I got every cold and flu going around and recovery times were abnormally long. Food travelling through my intestines began to turn to mush and headaches became regular visitors. Then came the fatigue.   Builders working at my house would laugh at me because I was always asleep. In January (after the builders and their constant dust had finally gone), the horrendous vertigo and dizziness set in. My brain fog and troubling sense of detachment become so constant that I wondered if I was dealing with brain damage. The vitiligo spread to my face and my hands. Heat (I was in the southern hemisphere where January means summer) became unbearable. My stomach always felt off. Flatulence became my shameful secret. Occasionally, I would get little water blisters on the inside of my forearms when I ate wheat. But they went away within an hour or two so I wrote them off as just another oddity.   Then, thank God, I got a stomach bug that seemed to go on forever. My need for sleep went up to 18 hours a day. I had a bone deep sense that death was looking over my shoulder yet felt strangely apathetic about it. I mentally started making plans for who would take care of my youngest child once I was gone.   Finally, I went to see an endocrinologist - who proceeded to ignore 75% of the symptoms I related. He diagnosed a vitamin D deficiency (14.9) but ignored an albumin level that was at literally the cutoff of ‘normal’. I fired him and went to a doctor who practiced functional medicine instead. Best decision I’ve made in a long, long time.   So, here I am. Obsessed with every morsel of food that goes in my mouth. Terrified of accidental gluten exposure. Wondering just how much more the vitiligo will spread. And anxious to start feeling something other than tired. Many of my symptoms have already disappeared, however, and when I start feeling dejected, I come to this community to read about how so many have made it through to the other side to lead happy and vibrant lives again. Such an AWESOME motivator!
  10. Severe Adrenal Fatigue Symptoms?

    Oh yes. After two years of constant, daily mega (mega, mega) stress coupled with undiagnosed gluten issues, my adrenals are wiped out. My doc has me on Metagenics Exhilarin (along with an A to Z of other supplements and a nutrition plan).    I have a number of things going on (gluten intolerance, malabsorption related malnutrition - especially vita D, adrenal insufficiency, vitiligo, possibly an issue with corn...) and don't really know what to lay at which door so I'll just give you my entire list of 'major' symptoms to see if you connect with any of them. Some have already improved but I'm in early days and it is amazing how accidental exposure to gluten can set me back.   1. Constant debilitating exhaustion 2. Inability to tolerate heat (would start slurring and then eventually pass out for hours) 3. Menstrual problems 4. Excessive urination (sometimes 26 times a day) 5. Emotional roller coaster - anxious over nothing but, often, apathetic about everything 6. Deterioration of mental capacity and ability to concentrate (bad enough that I was questioning whether or not I had brain damage) 7. Irritability 8. Dry skin 9. Vertigo and dizziness 10. Heart palpitations 11. Extreme ankle swelling (so not normal for me!) and periods of intense foot pain when walking 12. Joint and bone pain 13. Really unpleasant stools 14. Hypersensitivity to noise 15. Muscle cramps/spasms in my feet and diaphragm/chest 16. Headaches (not normal for me) 17. Stomach aches 18. Two episodes of something extremely painful going on in my right kidney/adrenal area   Wow! Now that I have typed all of that out I can say that I am actually feeling A LOT better after cutting out gluten!!!! Yay!   I'm also under doctor's orders to make sure I am in bed by 10 every night, no excuses. And lifestyle changes aimed at reducing stress have also been mandated.