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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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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Tree

Daughter Sensitive To Everything

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Hello, all,

This may be long, and I'm sorry if I ramble, but...

My 7yo daughter has been ill for just over a year, with constant abdominal and head pain, with reflux and Cyclic Vomiting Syndrome thrown in, to boot. She's had hospitalizations for dehydration, testing for everything, the usual drill. She had negative bloodwork and biopsy (which showed very mild inflammation) a year ago.

Recently a pain clinic dr. suggested trying going gluten-free. It helped for a couple of weeks (we went seriously dairy=free, instead of kinda dairy-free at the time), then she went back to feeling awful all the time. She developed strep throat then, and I figured she'd start bouncing back once she was feeling better.

Of course, she broke her collarbone once the strep was leaving, and then has shown symptoms of a first outbreak of cold sores (oral herpes). ARGH!

I sent off for Enterolab testing, which showed her to be sensitive to gluten, dairy, eggs and yeast, along with being positive to the tissue transglutinase (ok, I know I got that word wrong!), and having too much fat in her stool, indicating intestinal damage.

Oh, and she's a really committed vegetarian. She won't eat anything with gelatin, even.

To top it all off, my dad is an oncologist, and he can't accept Enterolab tests as valid until they're mainstream. Our pediatric GI hasn't heard of Enterolab, and she's on the national board. Geting the results, then finding this out, was like the "fake ending" of a horror movie; wait! There's more! Fortunately, my dad completely respects my authority as a parent, even if he was told by some other doc that celiacs could eat bread three times/week! (don't bother replying to THAT one; we all know how utterly bogus that is!)

Sooooo....we've been off gluten since early August, with the initial good response, followed by a return to constant pain. We've been off the rest since September 12th, when we got the results. Have had absolutely no response to diet. It's verrry frustrating, especially since:

--We're making our household gluten-free, to avoid cross-contamination and show solidarity, and

--My dh is reluctant to have the rest of us undergo Enterolab testing, because of the expense and lack of symptoms

--Naturally, my biggest frustration is the lack of response to the diet, especially after initiial good things! We had two weeks of pain being reported at a 3 on a scale of 1 to 10, instead of the 9-10 we usually see.

This is HARD! I am considering asking the pain doc for info about pancreatic enzymes, and also looking at parasitic testing through Great Smokies Diagnostic Lab.

What else would you suggest? Without results, it's harder for my family to accept validity of Enterolab testing. We've gone through so much with this kid; it's hard to have her in constant pain, and be able to do nothing. And, as one might expect, being in pain for so long has NOT brought out the best in her personality! Or mine.

I would really appreciate advice, info on how long to wait for improvements, advice on supplements, other things that could help, and feedback from others going through this, too. I am thinking of other dietary sensitivities, but she's "passed" all ELISA tests (including for gluten, interestingly), and Enterolab doesn't offer additional food testing.

Thanks for listening and responding,

Tree

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Maybe bacterial overgrowth? Try probiotics?

richard

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If I paid for Enterolab tests (which I DID) and those results showed I was sensitive to gluten, dairy, eggs and yeast, I wouldn't expect to be symptom free until I eliminated ALL sources of those 4 things. Yeast is used in many products, as are eggs. If your daughter is STILL having symptoms after eliminating gluten and dairy, you might need to 'sleuthe' for egg and yeast ingredients in her diet and also eliminate those foods. However 2 weeks of a pain level of 3 vs. her usual 9-10 pain level DOES indicate improvement.

I also had initial symptom relief when I eliminated gluten. However I then continued to experience painful symptoms. So I did the Enterolab package for gluten and milk sensitivity. When those tests showed I had gluten and casein antibodies, I tried substituting soy and got the same 'dairy' symptoms. So I eliminated soy and felt much better. I still experience symptoms with citrus or anything very acidic. So rather than paying for more tests, I just eliminate whatever seems to cause problems. I STILL have plenty of food choices. :P

Since your daughter's a committed vegetarian, eliminating the dairy and eggs may not be such a problem for her (since those are animal products). However, you may have to carefully combine grains and legumes or nuts so that she gets complete protein sources without any meat products. Have you read the classic 'Diet for a Small Planet' about combining incomplete proteins? An especially good cookbook for multiple sensitivities is "Recipes for Special Diets" by Connie Saros. Besides including recipes with adjustments for most dietary restrictions, that book also lists sources of most major allergens or food intolerances.

Good luck with helping your daughter find acceptable foods within those restrictions. Despite your family members' opinions, I would recommend you follow Enterolab's advice. It sounds like only E-lab gave you a concrete diagnosis and recommendations to relieve your daughter's symptoms. That seems better than guesses by doctors or others who discount E-lab. ;)

BURDEE

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Hi,

My daughter, 7 years old, had constant headaches (at least 2 a day) dizziness, stuffiness and frequent colds (8 last year) and ear infections. I talked to a nutritionist who was awesome! She is the only one who has been able to help. Her name is Kelly Dorfman and she is located in the Washington DC area. (do a google search to get her phone number) She does phone consultations. She advised me to get my daughter tested for food allergies through York Nutritional labs. (This is an easy do it yourself test). The test concluded that my daughter was allergic to about 12 different common foods! Althought it was difficult, I eliminated these foods and improvement has been great. No more headaches etc! Also she had been on lots of antibiotics for ear infections (about 60 days worth) and the nutritionist told me to give her probiotics (Primal Defense ) and enzyme supplements to aid in digestion (Houstonii Zyme Prime and Peptizide...find their site on the web). She was also tested through Enterolab and it showed she had some malabsorption (340 was the score) and some trouble w/ gluten. However, she does not carry either of the 2 main genes for celiac disease. Anyways, I am sympathetic towards you and your daughter's health. The nutritionist has been a great help after seeing about 7 different kinds of doctors who were NO help. The supplements I mentioned have also helped my daughter gain some much needed weight because they help her to absorb her food better. If you have any questions I'll be happy to answer. Hope this helps>

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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