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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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    1. rogue added a post in a topic B12, Pre-Mature Grey, Celiac?   

      No one has replied to this thread for a while, so I'm not sure if anyone is still checking it. But I was searching for something else and came across this thread. Here are my two cents:

      Yes, there could be a connection to premature graying of the hair and B12 deficiency. But the likely connection may lie in a hidden folic acid deficiency, which can cause graying of the hair. B12 issues can often mask a folic acid deficiency, so make sure that you get that tested right along with the B12. I actually have had a B12 deficiency for years, on and off, and only recently discovered the folic acid deficiency through my smart GI doc who knew to keep looking. Despite the fact that my dad and mom both grayed much later in life (in their late 40s/early 50s) I had found a few silvers on my own head (I'm in my early 30s), which was really shocking for me- I plucked them out! Now that I'm on folic acid supplements, hopefully my normal color will return. And hopefully yours too!
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    2. rogue added a topic in Other Food Intolerance and Leaky Gut Issues   

      Confused About Casein
      After being gluten free for nearly 6 years, it turns out that I'm still having problems absorbing vitamins and found out that I don't absorb zinc or folic acid, along with my malabsorption of B12. It caused a sluggish thyroid, among other problems. It might be that I have a problem with dairy. After a 3-month trip to China, my digestion improved ten-fold and I realized that I don't consume milk products there, aside from chocolate. So I cut most dairy from my diet and my digestion improved, though I'm not yet sure about the malabsorption. But I'm confused as to the root of the problem. My main symptom with dairy appears to be constipation- but I'm having severe fatigue issues as well (though that might be my battle with the thyroid.)

      I suppose my main questions are:

      1. Can casein cause a similar immunological reaction in the same way gluten would for Celiacs (meaning only needs to be absorbed into my bloodstream) or is it more like an intolerance and must go through my digestive tract?

      2. My sublingual vitamins use lactose as a binder. Is it possible to separate lactose from casein?

      I suppose I'm just confused about why Celiacs go on a casein-free diet to begin with if it doesn't cause a similar immune response. Is it merely an intolerance or is it something a little more sinister? I have several other food intolerances but they don't usually bother me unless I eat a lot of it. But I only need to lick an envelope with gluten on it to get sick.

      I'm confused! Help!
      • 1 reply
    3. rogue added a post in a topic Annatto   

      i've been doing some deep investigating and the problem may lie in the oil soluble annatto:

      i found that not only are there about 8 different kinds of annatto, but almost 100% of annatto coloring in the US is imported and extracted at the source- which means most of it is produced in peru and the carribbean regions. one of them is oil soluble annatto. to extract oil soluble annatto coloring, vegetable oils (sometimes containting mono and diglycerides) are used. oil soluble is used in products with a high oil content, like butter, margerine, etc. so it may be that water soluble annatto coloring (which uses soium or potassium hydroxide for extraction) may be okay, while oil soluble may not be.

      my reactions have always seemingly been gluten reactions. they're fairly immediate and relative to how much i consume. i found out it was in my butter, and then realized why i was feeling ill after breakfast in the morning (i had been putting annatto-containing butter on my gluten free waffles) and why i had rampant diarrhea after i loaded something with butter that contained annatto. I'm fine with annatto-free butter.

      the forbidden list that i received from my gastrointerologist came from the celiac disease foundation, not csa my gastro is the best doctor i've ever had and is completely brilliant- i doubt that he would consult with an organization that is anything less than he is.
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    4. rogue added a topic in Gluten-Free Ingredients & Food Labeling Issues   

      I've heard many opinions on whether or not Annatto food coloring is gluten free. It's not on the forbidden list from this site, but it IS on the forbidden list my gastrointerologist gave me from the Celiac Disease Foundation. I was surprised that it was on one list and not the other, but it explained a lot since I have clearly reacted to it with my typical celiac disease symptoms. I looked into it further and found this:

      "annatto color: A coloring agent derived from the seeds of the Achiote, also known as the Lipstick tree (Bixa orellana), it is often used in cheese but also in many other orange-colored foods. The seed itself is unlikely to contain any gluten, it is the processing of the seed into a colorant that causes concern as it appears to use alcohol in the process. There is also suspicion that caramel color may be included in the annatto colorant. Anecdotal evidence has some celiacs reacting to foods with annatto color in them but this may be a non-celiac reaction to the annatto itself."

      Any comments on this? Has anyone else reacted to Annatto?
      • 17 replies
    5. rogue added a post in a topic Do You Have Dry, Painful, Cracked Heels?   

      from what i understand, vitamin A definciency can cause/contribute to dry & cracked callouses on heels. along with your celiac panel, try getting a fat-soluable vitamin panel. that will help you determine whether or not it is caused by a vitamin deficiency.
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    6. rogue added a post in a topic Celian Diet & Breast Lumps?   

      if you don't have a family history of breast cancer, you shouldn't worry. but it's always wise to get it checked out. it's either fibrocystic breast disease (really common and totally benign), a cyst (also common), or a fibroadenoma- which is a benign breast tumor. i had one of the latter when i was 18 and then another when i was 21. i had them both removed via surgery. if it's a cyst, they can generally fix it right there in the office with some anasthetic and a syringe, and the fibrocystic breast disease you just have to live with.
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    7. rogue added a post in a topic Anyone Allergic To Carrots?   

      YES! Haha! I thought I was the only one (other than my brother). I noticed a few sensitivites to certain foods after removing the gluten factor and had some allergy testing done. I specifically requested the test for carrots and it came back positive. They make my throat itchy and give me gas and bloating. The nurse that was helping said she'd been an allergy nurse for 25 years and I was the first person she'd met with an allergy to carrots.

      So nice to be unique
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    8. rogue added a post in a topic Pernicious Anemia   

      As far as I understand, Pernicious Anemia is NOT related to Celiac. Pernicious Anemia is caused by a lack of instrict factor, and is not simple malabsorption caused by damaged intestinal villi, as present in Celiac Disease. For instance, I have difficulty absorbing Vitamin B12 because of my Celiac Disease and have to get B12 shots monthly, but tested negative for Pernicious Anemia. Simple Vitamin B12 Deficiency Anemia is not the same as Pernicious Anemia. Basically what I'm trying to say is that the reasons for B12 deficiency in each case are different. Pernicious Anemia is caused by the lack of instrict factor while Celiac patients have a difficult time absorbing fat soluable vitamins, such as the B vitamins, iron, beta-carateen, and calcium because of damaged intestines.

      Of course with that being said, heaven only knows how many illnesses are related to Celiac Disease.
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    9. rogue added a post in a topic Could It Be Related To Celiac   

      I noticed that once I removed the gluten from my diet, I was still having problems so I went to an allergist. I found out that I was mildly allergic to cantaloupe, buckwheat, carrots, garlic, and corn. Some of these I had to specially request to be tested for, like carrots and buckwheat, as they are not part of the normal food allergy panel that allergists typically test for. The carrots, for instance, is such a rare allergy that the nurse who was there said she had been an allergy nurse for 25 years and had never met anyone allergic to carrots. According to my allergist, he said people with celiac disease often have unusual food allergies.

      If you are still having problems, try food elimination and see an allergist. There may also be new gluten-free foods introduced into your diet that you didn't know you had problems with because you'd never really eaten them on a regular basis before. That's how I found out I was allergic to buckwheat. I threw up and got a rash after I started eating buckwheat waffles.
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    10. rogue added a post in a topic Negative Biopsy   

      I was diagnosed with celiac disease one year ago- even with a negative biopsy. I also had Vitamin B12 Definiency Anemia, which can only be caused by malabsorption problems or by being a strict vegan. Since I eat animal bi-products on a regular basis, it only left the former to be concluded. You have 20-22 feet of intestines and the endoscope reaches only a fraction of it. The biopsy, in my opinion and the opinion of my doctor, is not all that accurate. It can tell you 100% for sure whether you have it, but is not entirely conclusive.
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    11. rogue added a post in a topic Confused Newbie W/ Negative Diagnosis   

      I tested negative for celiac disease for 8 years before I tested positive. It wasn't until I went on a super gluten-rich diet for 3 months did my blood tests finally go off the charts. I was finally diagnosed with celiac disease, even though I still have a negative biopsy. Keep trying, and if you feel better gluten free- then I would say stay far away from it.
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    12. rogue added a post in a topic Will A Gi Give A Formal Celiac Diagnosis W/ Neg Biopsy?   

      I was diagnosed with Celiac with a negative biopsy. From my understanding, while the biopsy itself can be either positive or negative, whether or not that determines you have celiac disease is either positive or inconclusive. You have 20-22 feet of small intestine, and the endoscope barelly reaches a fraction of it. You may have patchy damage. I don't believe that the biopsy is the most accurate test available. If you have positive blood work and react well on the gluten free diet, it's a safe bet you have celiac disease.

      You could also request a blood panel of fat soluable vitamins such as the B vitamins, beta-carateen, iron, and calcium. Many people with celiac disease with have a slight definiciency of one or many of these vitamins. I had B12 deficiency and that was a big clue to my doctor that I was having malabsorption problems.
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    13. rogue added a post in a topic Period-making Things Worse?   

      Before I was even diagnosed with celiac disease I noticed that my symptoms would always get worse around my period. I still don't entirely understand why. My doctor suggested birth control pills, which totally worked. So if you're not on the pill, I suggest giving it a try.
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    14. rogue added a post in a topic Newly gluten-free W/ Some ?s   

      When I was 18 my very first symptom was heartburn. And then it just got worse from there. I had debiliating flu-like symptoms for years. Consider yourself lucky- my first doctor thought I had an ulcer and sent me off to a Gastroenterologist who performed an endoscopy and only found irritation. I had zero villous atrohpy (unlike yourself) and my blood test for Celiac came back negative. It fact, it came back negative for 8 years until I moved to Croatia and ate a gluten-rich diet for three months straight. I was only just diagnosed a little over a year ago when I was 26. After 8 years of being ill I was finally told to go gluten-free.

      So to save yourself the trouble of years of being ill, follow your doctor's advice to a T for several months and see how you feel. I would also consider that you might have Gastroesophageal Reflux Disease (GERD) in combination with your Celiac. I have the same thing and take Prevacid, which isn't over the counter so you'll have to ask your doctor about it if the heartburn doesn't totally go away on the gluten free diet.

      It's not as bad as you think. The diet is a pain in the butt sometimes, but it keeps me slender and healthy. I now look at all the garbage that my friends eat and sometimes think I'm going to live to be so much older than them!
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    15. rogue added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Adhd-like Symptoms
      Can anyone on here tell me if a child with celiac disease can present with ADHD like symptoms in infancy? Can it present in infants without digestive symptoms or do all infants and children who have celiac disease have digestive symptoms?

      I'm trying to figure out whether or not my friend has celiac disease. He is now 29, but has had ADHD-like symptoms since infancy, with little or no digestive symptoms. He thinks is reactions are related to food, but he can't figure out which foods are causing him problems. His brother has a rare oral allergy syndrome, and his father has hypoglycemia- possibly auto-immune hyoglycemia. So hyper-sensitive immune systems are in the family. He's never tried the gluten free diet, and has never been tested for Celiac. So I'm wondering if he should be tested or what his chances are of having celiac disease. Are they really low? Or is there a possibility that he may have it?

      Any help or ideas? It would be greatly appreciated!
      • 1 reply

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