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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere 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 jmarie

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    1. jmarie added a topic in Celiac Disease - Related Disorders & Research   

      Chronic Sinusitis & Celiac Disease
      I have been gluten-free since a biopsy diagnosis last April, but I have had a chronic sinus infection since October . I have them every year, and now I have a consultation appt with a ENT to determine whether I need surgery. When I googled "chronic sinusitis celiac disease", I immediately came to a site that listed celiac as a predisposition to chronic sinusitis. Since my insurance company has refused a CAT scan (recommended by my PCP), I wondered whether I could site celiac disease as a predisposition that might make them more inclined to treat it (apparently 4 months of sinus infections and 3 courses of antibiotics are not enough . I wonder if anyone has any knowledge or experience around this issue...

      • 3 replies
    2. jmarie added a post in a topic Explaining Gf As Lifestyle Choice.   

      My issue was, of course, not with people who have not been "officially" diagnosed, since my understanding is that many diagnoses stem solely from a positive response to a gluten-free diet. It just doesn't make any sense that I would have been offended by people who are here for any kind of support relative to survival.

      My offense stemmed from someone suggesting that they might benefit from pretending to have celiac disease for any reason, even to make their gluten-free lifestyle better understood. I can't imagine doing that, even during the many years that I was undiagnosed and suffering from a myriad of symptoms.

      A few times since I was diagnosed six months ago, I have run into people in local health food stores who are shopping for gluten-free food and chatting about it with me when I realize they are doing it for diet reasons, like Atkins. I guess that makes me resentful, because I wish that it were an option for me (I'd opt out).

      I was not trying to be selfish, I was expressing my thoughts to better understand the forum. Apparently that is discouraged unless my thoughts jive with the mainstream. I must have expected a gentler response, but I don't know why.

      I am sorry if my comment was hurtful or "selfish", but I think I am entitled to my worry, anger and frustration (and consequent venting) just like everyone else. It is hard for me to feel like gluten is hanging over my head like a sword of Damocles, especially since I have recently been diagnosed with "unresponsive celiac disease", meaning that my intestines are not healing well even gluten free.
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    3. jmarie added a post in a topic Explaining Gf As Lifestyle Choice.   

      I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease. What are you doing here? If you just want to be gluten-free, great, good for you. It's probably a healthy choice.

      But isn't this "" for people with a disease that renders gluten intake life-threatening? Isn't it here that I can communicate and empathize with people who have suffered debilitating symptoms, then had made a drastic lifestyle change to save their lives?

      I don't fault anyone for needing support with a diet, but I don't think this is the place for dieting support... Maybe I'm in the wrong place. I have a brother with a birth defect due to this disease and my mother is gone from an autoimmune disorder related to progressive celiac disease.

      I don't think you should lie about it, that's ridiculous. That's mocking someone's illness... like saying you have cancer when you don't. If you just don't eat gluten, just say that: "I don't eat gluten because it's not good for me". The end.
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    4. jmarie added a post in a topic What's For Lunch?   

      I don't trust Amy's. It says "Gluten Free" on the front but in tiny, tiny letters on the back it has a message "for those with food allergies" that the food shares a facility with wheat products, among other things. Am I wrong to fear them? I assume that if it's dangerous for people with allergies, it's dangerous for me!
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    5. jmarie added a post in a topic Come And Rant!   

      Here's my rant:

      Products that list "gluten-free" on the front of the package in big, friendly letters, prompting me to buy the product. Later, I notice little <i>tiny, tiny</i> letters that say "For those with food allergies, this product was manufactured in the same plant with products containing <i>wheat</i>.

      When I was visiting my dad in rural NH, that little trick left me with virtually no food for a day and a half immediately after The Big Road Trip to the health food store an hour away.

      Argh, indeed.

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    6. jmarie added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      What's Your Story?
      Just wondering... It's not a story people often want to hear, but I am interested in how this all came about for folks.

      When I was 17, I had a sudden systemic inflammation which landed me in the ER. They kept testing for different diseases that my mom had - lupus, sjogren's syndrome - but all the bloodwork would show was that I had "some sort of active autoimmune disorder". They treated me with NSAIDS until I developed a duodenal ulcer from them. I was on Propulsid until they took it off the market for giving people heart attacks. No one ever said I was a hypochondriac b/c my joints were obviously swollen and misshapen and the vomiting & diarrhea was hard to ignore. Still, it was twelve years before I got a celiac diagnosis.

      I had heard a piece of a show on NPR about some disease that people were describing like "I was so tired and sick, I just wanted to die" and "I was wasting away... waiting for my life to end" and I thought, that's me, that's my life. But I didn't hear the part of the program that said it was celiac disease until 2 months later, after my diagnosis. Even then, the dr was ready to write it off as IBS until my husband said "No - that's not what she has. Keep trying." My husband thought I had stomach cancer.

      As I was walking out of the dr's office, the gi nurse said, "Hey, are you anemic?" and I told her yes, I'd been anemic for 12 years no matter what I eat. I hadn't gotten my period in 5 years. The endoscopy was scheduled the next week, and it showed that my small intestines had atrophied, the biopsy confirming celiac disease.

      6 months later, the second endoscopy has shown only marginal improvement on the gluten-free diet.
      • 12 replies
    7. jmarie added a post in a topic Gf 6 Months But Still Bad Biopsy!   

      Hi there,

      My symptoms have improved quite a bit - that is, I was spending hours each day vomiting or curled up on the floor trying to will myself to a standing position, and I am definitely not in that position now. However, I still have stomach distention, exhaustion, foggy-headedness and digestive distress. My joints occasionally swell up.

      Does anyone know how long it takes for one glutening to die down? That is, if I have been absolutely gluten-free but accidentally one time ate a little gluten, would it be another year before I felt well again?

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    8. jmarie added a post in a topic Brand New Celiac   

      Hi there. I have been gluten-free for six months, and I notice that symptoms are a little tiny bit better each month. It's been a long month, and according to my gi, my intestines are still quite extensively damaged. I had been sick for 12 years, though, so I was really quite sick by the time I was diagnosed.

      Maybe if you're diagnosed early enough, it will be quicker? It's amazing to me that some people are saying it only took a few weeks. That has certainly not been my experience.
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    9. jmarie added a post in a topic At What Age Were You Diagnosed?   

      Diagnosed at 29 after 12 years of severe arthritis and anemia. At 17, they diagnosed me with "autoimmune disorder - unspecified", and they treated just symptoms for years. I assumed my stomach distress was psychosomatic/stress-related until it became so severe that I was vomiting after I ate anything. It would have been nice to be diagnosed earlier, but my gluten-free diet doesn't seem to be helping too much, either.
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    10. jmarie added a post in a topic Gf 6 Months But Still Bad Biopsy!   

      Hi again. Thanks for the responses.

      While my diet and (I believe) my skin products are gluten-free, my household is not. My husband and daughters (7 & 9) all eat quite a bit of gluten and I do all the cooking. I wash my hands frequently, but my husband suggested that maybe it's getting in through my skin (is that possible?!). The husband has agreed to a gluten-free household, but that makes life much, much more difficult for me since my daughters are already picky eaters. That might sound lazy, but I work ft, go to school & ft+ child-raising.

      I think I've had a really good attitude about all this until now, but I am feeling really sad and frustrated at this point. My mother died of lupus and had sjogren's syndrome (both associated w/celiac's although she was undiagnosed) and my brother is hydrocephalic, a congenital disorder that can occur if the mother is an untreated celiac.

      Sorry for the whining, but I really have nowhere else to whine. I don't know anyone with celiac's disease & had never heard of it until my diagnosis.
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    11. jmarie added a post in a topic Just Got Back From My Endoscopy   

      I just had a 2nd endoscopy (6 month follow-up). Last time, my dr said that my intestines had atophied & were just really dysfunctional. This time, he just said "Your celiac's is unresolved by your diet". At which point, of course, I burst into tears. They all looked confused that I would be so upset, but I feel like I put forth a lot of effort for naught.

      Anyway, the procedure was not that bad - I was totally asleep for the 2nd one. The colonoscopy, on the other hand, was horrible b/c I had to fast for so long and drink that vile liquid laxative. And that test showed nothing.

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    12. jmarie added a topic in Celiac Disease - Coping With   

      Gf 6 Months But Still Bad Biopsy!
      I was diagnosed with celiac disease after a biopsy last April (doctor during endoscopy: "Whoa - That's celiac disease!") & I have been trying my hardest to be gluten-free ever since. I have been arthritic and anemic with periodic systemic inflammations since I was 17 (now 29), but last winter was SEVERE gastrointestinal pain, to the point of complete incapacitation. Anyway, I have been periodically very sleepy and my stomach maintains its stubborn ugly bloat no matter how many miles I run every day.

      My diagnosis after last week's endoscopy is "Celiac Disease Unresolved with Gluten-Free Diet". What does that mean??? What if all the "risk factors" - including cancers and autoimmune disorders - are now mine no matter how gluten-free I am? I have a follow-up appt. in two weeks, but I don't really trust my doctor, who keeps insisting that bloating, weight gain and constipation are not associated with Celiac's and "it must be from something else".

      Sigh. Does anyone have any guidance to offer? I'm freaking out a bit (clearly).

      • 11 replies

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