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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Chaff

Just Stumped The Nutritionist

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The Navy nutritionist at the Okinawa military hospital -- who herself has celiac -- was totally stumped by my leaky gut symptoms and inability to eat anything beyond ten foods. "I just keep thinking of solutions that include things you can't eat," she said after nearly an hour in her office.

You and me both, sister. I just told her not to worry, I will get better, and I can probably manage on my own until then. I wouldn't have been so cocky about it, except I have my Larabars, Zing Bars (10 g protein! No soy or dairy!!), and coconut milk and vegan hot chocolate. I can deal with small, boring meals as long as there are snacks to fatten me up.

And today I successfully ate one gluten-free sausage. Only barely noticeable pain! If it still works OK tomorrow, I may be able to add it into my safe list. And then later, maybe eggs...bacon...?

Anyway, nutritionist-bating isn't a hobby of mine. But she didn't know the hidden pitfalls of sushi in Japan -- possible barley sweetener in the rice vinegar, gluten-derived MSG in the nori, not to mention cc. So I unintentionally ended up scaring her out of ever eating sushi again. :o

Sorry -- just had to get this little episode out of my system. And brag about being able to eat a sausage!

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Oh, dear. I had a Larabar an hour ago and now I have brain fog. Now I have to remove Larabars from my "totally safe" list. :(

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Do you think it could be from the sausage?

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Anything's possible, but I time my meals out so I can ID reactions -- they usually happen on a certain timeline (have to start within 1 hour of eating but can last 1-7 hours). The sausage did its worst and stopped before I ate anything else. Gluten, casein, and oatmeal are my only exceptions to the rule so far.

I'm also getting clumsy suddenly. Not a good sign. I wish leaky gut management had more scientific research behind it. So annoying. My guess is I have to put almonds on a rotation diet, or, http://www.youtube.com/watch?v=iH9IO6iMO78: Almonds are a "sometimes food."

The learning curve on this is ridiculous -- by the time I get the hang of it, I'll be healed up. :D

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The learning curve on this is ridiculous -- by the time I get the hang of it, I'll be healed up. :D

And it may not take as long as you think, iffen you are assiduous :rolleyes: Hang in there.

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I have to agree with Shroom on this one, kiddo.

The sausage is more suspect than the LaraBar (if you have been eating LaraBars all along w/o issues)

What's in the sausage?

Delayed reactions make it very difficult to pinpoint a culprit and as you and I have discussed already--you are still healing.

Just 6 weeks into this journey and EVERYTHING may seem like a "bad boy food".

I never say this to newbies because it sounds discouraging--when in fact my intention is the opposite--but you have a long way to go yet

and I personally, did not stop feeling as if every food were a problem until the 15 month mark.I rotated foods in and out till I was nuts with all that....argh.... But it happened. I started to heal and absorb and more foods became my pal again. (still have a few buggers who bite me on the butt)

Bottom line....sometimes, it's not necessarily the food, but just your gut "squawkin at ya"..

Just hang in there.

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When I went to my nutritionist I was only able to eat 11 foods (if you count butter and salt as foods). She told me I was reacting to pesticide and artificial fertilizer residues, and that I should try going totally organic. I did, and was able to add quite a few foods. I even tested the theory by once again trying non-organics of the same foods I had added. They got me every time. Eventually I healed enough that I could start eating non-organics, but it took almost a year. I'd RATHER eat all organic, but between the cost and the non-availability in my small town, it's nice now that I have a much larger menu to choose from.

I have been trying all sorts of things lately and have had tremendous success! Pamela's cookies, bison hot dogs, and I even made pork pie!! (My favorite). Allspice and clove were off limits to me before, but I had a great holiday eating my favorite holiday foods. I have even been able to eat white potatoes again in moderation. Next up is blueberries, and maybe a gluten-free pizza. YIPPEE!

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Hi Chaff,

If you are trying to add/test foods, it is much better to add a whole food. Sausage is a combination of ground pork and spices when homemade, and often preservatives and who knows what else when it is a processed version. Instead you should try adding plain pork chops, cooked by yourself at home, not at a restraunt. Or plain bacon, or plain ham. I suggest you take a look at the sausage label and write down the ingredients. If you want you can trial each of them separately to see of they cause symptoms. The same idea applies when adding any food. You should plan on adding whole foods, not processed foods. once you have a variety of whole foods that work for you, then you can try adding more complicated foods to your diet. At least that's how I would do it. Basically, whole foods are anytime foods, and processed foods are sometimes foods. I think Cookie Monster might have a different take.... :) Thanks for the video link, that was fun!

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Thanks, everyone! You all are so nice. :D

GFinDC and bartfull, I'm deeply offended you think I might eat something that isn't a nutrious, organic, whole food. -_- Trust me, this is a very minimally processed, completely wholesome sausage. Less than five ingredients, no nitrates, and certified by two US celiac organizations. I was shocked, SHOCKED to see this in a US miltiary commissary. I may buy out all the packages. (!) I prefer not to eat meat, but I clearly am not in the driver's seat right now and I'll take what I can get.

IrishHeart -- thanks very much for the advice. I consoled myself by reading up on intestinal permeability recovery rates on PubMed, which as you point out are in my near-term future self's favor but not my current self's. Delighted to discover that hereditary hemochromatosis and celiac are apparently next to each other on my DNA, which has a pleasant symmetry to it since both are totally annoying. But probably nowhere near as annoying as chronic anemia with undiagnosed celiac.

I tried the sausage again today. No worries -- just fine. Yay!

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Thanks, everyone! You all are so nice. :D

GFinDC and bartfull, I'm deeply offended you think I might eat something that isn't a nutrious, organic, whole food. -_- Trust me, this is a very minimally processed, completely wholesome sausage. Less than five ingredients, no nitrates, and certified by two US celiac organizations. I was shocked, SHOCKED to see this in a US miltiary commissary. I may buy out all the packages. (!) I prefer not to eat meat, but I clearly am not in the driver's seat right now and I'll take what I can get.

....

I tried the sausage again today. No worries -- just fine. Yay!

Well good, we aim to offend ! (not) :)

Good on you the sausage worked the 2nd time. Now you have to decipher what else you may have eaten that day or the day before that may have caused you to be sick. Or not, as it could just be healing turbulence as was also suggested by IH. Which is very possible. It's great they are stocking gluten-free products in the commissarys now. Will cease never wonder! :)

Sausage is still not something I'd suggest trying at this point though. Spicy foods are, well, spicy. And that spicy-ness may be nice for your tongue, but think about rubbing it on an open wound. Like, say, rub a nice hot cayenne pepper across a burn or a scrape on your skin. Doesn't sound fun eh? You can't see the inside of your gut, so it is not obvious that it could be like an open wound. But that's what celiac does, it destroys the lining of the gut. Treating your gut a little gently for awhile is not a bad idea. You can put a bandaid on your elbow, but you can't do that to the inside of your gut. The damage is right there exposed to everything you eat. Spicy, sweet, sour, crunchy, everything goes right against the wounded gut lining. I know, you can take Pepto Bismol to coat the gut, but that isn't a long term solution. Pepto helps for accidental glutenings tho.

Boy gluten-free food in the commissary. You are practically living in a resort there! It's fantasy island! :)

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My daughter and I have an upcoming appointment with a dietician at our Endocrinologist's office. Am *not* looking forward to it. I have been to many of them before I knew about the food intolerances. I was a vegetarian then. All of them pushed chicken. I *hate* chicken. And now maybe I know why. I am intolerant to it. And it took us so long to find out about our intolerances because they are the delayed reaction type. I only figured the eggs out after not eating any for a very long time. I cut them out because daughter couldn't have them. But then after I ate them on 4 separate occasions and got the same reaction...first somewhere around 16 hours later and then when I ate them the following day, 2 hours later. As if that weren't enough, I repeated the same exact thing, thinking that the first time had been food poisoning because I got the eggs from a salad bar. So now I know better!

The last dietician I saw wasn't much help because she didn't seem to know much about gastroparesis or food intolerances. Kept telling me that this is lactose free and that is lactose free. To which I replied, "It's not just the lactose but the casein!" And then she muttered just like they did with the chicken... "Well you could at least *try* it." Uh, no thanks. I no likey the big D.

Our diets are pretty limited and we can't even eat some spices and seasonings. Thankfully I can have beans and I love them. So I try to base my diet around those. I am also constantly on the lookout for recipes that I might make. I am going to try Rissoles over the weekend. But they will not have any dairy, egg or breadcrumbs in them. Just ground beef, precooked shredded veggies a little ketchup for flavoring and a wee coating of sweet rice flour in the hopes of crisping them up when pan frying. I am hoping that my daughter will eat these. She doesn't usually ground beef but she does love my meatloaf and this seems to be a lot easier. If they work, I'll make quite a lot and freeze them.

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I don't know how I'd survive without Larabars either...

I'm also in agreement that it could have been the sausage making your gut go what is this! Can I handle this? I don't know. Let's find out. it might not have been a reaction to anything in the sausage per se, but that your gut just had to adjust to it, might have had trouble with it the first time hand left a bit of minor damage behind, giving you a bit of grief with the Larabar. Who knows. But if all went well the 2nd time, then yay! I would just say don't have them too frequently. Sausages can be a bit of trouble at the best of times. (Damn, now i want one).

Good points (and info for your nutritionist) about the sushi. I want to go back to Japan, but the food situation is one thing holding me back. Eating out would be a near impossibility, and reading the labels at the grocery store would take hours... So glad I went before the celiac struck. I used to be a tempura addict!

Anyway, glad to hear that you have access to some good things, and that your gut seems to be healing.

Good luck!

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Oh, dear. I had a Larabar an hour ago and now I have brain fog. Now I have to remove Larabars from my "totally safe" list. :(

depending on your sensitivity level, it could indeed by the larabar. from their website, i get the impression that they are produced in a facility with gluten-containing ingredients: "GLUTEN FREE/CELIACS LÄRABAR®, über® and Jŏcalat® are Gluten Free. They have no gluten-containing ingredients, and we have manufacturing controls in place to ensure that there are no cross-contact concerns. We also periodically verify our practices using Gliadin gluten testing."

http://www.larabar.com/about/special-diets

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i dont have much faith in dietitians or nutritionists , but to be fair I do not have much faith in doctors either :P . When I went to a dietitian , I had a safe list of about 10 foods needless to say she was not very helpful :ph34r:

Take it slow and steady, give your self time before you start adding to many foods. Give your self time to heal a bit first .I know its frustrating but your health and healing is too important to rush things .

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Well good, we aim to offend ! (not) :)

Good on you the sausage worked the 2nd time. Now you have to decipher what else you may have eaten that day or the day before that may have caused you to be sick. Or not, as it could just be healing turbulence as was also suggested by IH. Which is very possible. It's great they are stocking gluten-free products in the commissarys now. Will cease never wonder! :)

Sausage is still not something I'd suggest trying at this point though. Spicy foods are, well, spicy. And that spicy-ness may be nice for your tongue, but think about rubbing it on an open wound. Like, say, rub a nice hot cayenne pepper across a burn or a scrape on your skin. Doesn't sound fun eh? You can't see the inside of your gut, so it is not obvious that it could be like an open wound. But that's what celiac does, it destroys the lining of the gut. Treating your gut a little gently for awhile is not a bad idea. You can put a bandaid on your elbow, but you can't do that to the inside of your gut. The damage is right there exposed to everything you eat. Spicy, sweet, sour, crunchy, everything goes right against the wounded gut lining. I know, you can take Pepto Bismol to coat the gut, but that isn't a long term solution. Pepto helps for accidental glutenings tho.

Boy gluten-free food in the commissary. You are practically living in a resort there! It's fantasy island! :)

Wow! I missed the part about the commissary. That's one reason we stopped shopping there very often. They had no gluten-free pasta or baking stuff. I think they may have had rice noodles in the Asian section but we really don't eat those. And based on how our nearest one (Marysville) looked on our last visit, I rather doubt they would have gluten-free stuff now. We did go in Aug. (I think) and didn't get as much as we used to. For one thing we have Winco now which not only has a fairly good gluten-free selection (even though we don't currently need those things) but lower prices overall. But it would appear that their customer base has dropped or something. Probably doesn't help that a Winco has opened a few blocks from them. They totally did away with they two fast food places that used to be there. And some of the aisles that used to be there are no longer. Instead they filled those up with things like cases of toilet paper and paper towels. Big things that took up a lot of space and made the aisle look full. It was a very sad trip indeed.

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Update: it's looking like either hereditary fructose intolerance or leaky gut of monumental proportions. My only safe foods are plain meat/fish/eggs (cooked--homemade mayo had fructose that laid me out), most vegetable oils and ghee, and plain white rice, thoroughly washed. Oh, and a thimbleful of select spices. Basically any fructose over .1 g per day is bad, bad, bad. That's about a fourth cup of potato.

Going in a March to Mayo for some follow-up and dietary testing. The HFI forum folks have been lovely and lots of help. But they mostly all eat tons of wheat and dairy, the lucky stiffs, though they do have a few celiacs among them. I have to go back and forth among their forum and this one for complete advice.

I just made crackers with olive oil and cream of rice! So I'm managing some kind of variation. But honestly, just grateful not to feel sick all the time. Everything's roses as long as I don't stray from my diet.

PS, the commissary system is getting savvier about gluten-free stuff. But I had to wander the aisles for an hour to locate it all!

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    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com