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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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the2ofus

Sitting On Pins And Needles

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I just sent my blood work off to Prometheus in California this morning. My doctor is waiting till I get that back to schedule my endoscopy. In all my reseach I am finding out that there is more wrong with me than I originally thought. When she does the endoscopy she is going to check for esophegal problems.

Are swallowing problems common in Celiac? I get very bad pains sometimes almost like a heart attack.

I am really hoping that my blood work comes back positive. It has to be easier to go gluten free than not have an answer to what is wrong with you. I have so many symptoms and I'm getting very confused. I have heard that the blood test isn't always accurate.

I have spent the last two weeks eating more gluten than I normally do. Fortunately my reactions are not a severe as some of you. I get a lot of heart burn but the diarrhea isn't daily.

Sorry this is so long but I needed to speak my nervousness to people who are there. In my daily life I get a lot of the "oh you'll be fine.""take the tests but I doubt that's whats wrong" Sometimes I actually am starting to feel like a hypocondriac (SP?). Then I read the list of sypmtoms and I'm back on track.

Thanks everyone for listening.

Robin

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the2ofus,

Was your doctor receptive to the idea of using Prometheus labs? Had he heard of them or used them before? I have my appointment on Thursday and I am taking my Prometheus kit with me, but I do not know how he is going to react to me suggesting a different lab.

Good luck, and be sure to post your results.

Thanks

Lisa

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I am waiting for my results as well. Endoscopy this Thursday. I, too, just want an answer. Just tell me what to do to feel better and I will do it. I am sick of being sick.

I sometimes get painful spasms in my throat when swallowing. I have noticed it usually happens with bread products or pasta. It really hurts and I can not talk until it goes away. I have learned to eat very small bites.

I have people tell me it is just IBS and I have to live with it. Well, my doctor hasn't said that and I don't think waking up in the middle of the night doubled over in pain is normal and I really don't want to "just live with it". I want to feel better.

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Robin, I just want to reassure you that you are not over-reacting! When we noticed my daughter wasn't following her growth curve everyone told us how kids grow differently, she was just petite, it was OK. Then when the constant diarrhea started it was just viral...for 4 weeks when no one else in the house had it!!! Well guess what, it was something, I was not over-reacting. We know when there is a problem, and unfortunatly, it is usually just up to us to find the solution. Hang in there and I hope all goes well with your testing and recovery!

Michelle

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Thanks everyone for answering me. I needed some positive feed back.

Lisa, did the doctor take your prometheus kit for real? My doctor was in the computer at prometheus but when I told her I wanted to use them she couldn't understand why I didn't want to use quest. I heard that quest doesn't do the test accurately all the time. I hope prometheus does.

If all my daughter and I have is IBS then I'll deal with it, but I'm not ready to lay down and play dead (sort of speak) without a guarentee that it's not celiac. One is an inconvenience and the other is life threatening.

Thank you and I hope everyone feels well,

Robin

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Robin,

I just had my endoscopy yesterday and the results surprised me. I have a hiatal hernia and ulcers. Now the only problem I have had in my upper gi tract is pain swallowing. Now I know why. A friend has a hernia too and he said sometimes it is so bad he feels like he is having a heart attack. As far as the ulcer I had no clue. I dont have heartburn very often. And not usually bad enough to treat. It is a strong possiblity that I have h. pylori bacteria which caused the ulcer and possibly alot of my illness. I have to wait for the test results for two weeks, along with the celiac biopsy.

I feel like I am getting somewhere!

Janine

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the2ofus,

I brought my Prometheus kit to my doctors visit, but to my surprise, my doctor accepted the Enterolab results and scheduled me for a biopsy on May 13. So, I did not need to send blood to Prometheus after all.

Lisa

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my doctor accepted the Enterolab results and scheduled me for a biopsy

That is great news Lisa! I am so glad your doctor accepted the results.

I have had mixed results with the Enterolab diagnosis.

My family doctor accepted it for me and ordered the blood tests for my kids.

My GI did NOT except it.

My kids GI doctor did not discount it for me and is willing to conscider that they might be accurate for my kids. He is still undecided, but keeping an eye on their progress with the gluten-free diet.

My sons rheumatologist/immunologist gladly accepted them and is not willing to say he is NOT Celiac even though the results show that he is only gluten intolerant and does not have the celiac disease genes. He says we don't know enough about celiac disease yet to know that we have isolated all the genes responsible for it.

The pediatrician in our family doctors office rolled her eyes when I made her add it to my daughters chart at her 5 year check up. She had already given her a clean bill of health and said she was growing just fine, when I gave them to her she just looked at me like I was crazy. Well I know my daughter is growing fine. She grew an inch the first month being gluten-free!

My sons neurologist accepted them.

Our family ENT accepted my word that we are all gluten intolerant, but I do plan to give him copies of the test results.

So I guess it depends on the doctor. Good luck with your biopsy. I assume you are still on gluten? I hope you are not too ill right now.

Robin, did they happen to tell you how long until you get the results? I am one of the people who are very down on Quest Diagnostics. Our blood tests came back inconclusive every time! I hope you get the results soon.

Janine, I also had a hiatal hernia when I had my second endoscopy done. I did not have it when they did the first endoscopy a year and a half earlier. I read somewhere that actually doing the endoscopy can sometimes cause a hiatal hernia! I think mine was caused by the gluten, and now that I have been gluten free for 4 months I have no symptoms of it anymore. I also did some alternative therapy to get the hernia to heal itself.

God bless,

Mariann

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Guest Evelyn's mom

Hello,

Those of you that are using Enterolab, did you purchase the kits first and then bring the results in to the doctor or were you able to have your doctors order them for you? And, did any of your ins. company's cover them?

I feel like I just can't read enough, this message board has provided me with so much info..Thank you everyone!

RaeAnn

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Guest gillian502

I did not use Enterolab, but from what I've read here doctors are not too keen on accepting results from them. :( I hope your doctor is really open minded and understanding, though, so the Enterolab process will be accepted as fact and you can have an official diagnosis for your daughter. Good luck.

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Hi everyone,

I was very impressed with Prometheus. I had my blood drawn on Monday. Airborne Express picked it up at 6:00PM. It was delivered on Tuesday morning, by thursday afternoon my doctor was faxed the results.

My numbers were all low and the HLA DQ2 and 8 genes are NOT present. I was thrilled to hear this.

Marianne, what have you heard as far as them not having figured out all the genes that can cause celiac? I was 100% happy till I read your post. Now I'm just 95% happy. I know more than dairy effect my daughter and myself.

Janine, What do you do for a Hiata hernia and an ulcer? I have my endoscopy on May 11. I guess with my blood results there is no need for the biopsy. I have heartburn almost daily. What kind of pain do you have when you swallow? I don't have pain then but I get kind of a tightening in the side of my neck into my shoulder. I also get that really bad pain in my chest that feels like a heart attack. It goes from my chest and through to my back. Many times when I swallow food gets stuck and takes a minute to work it's way down. This hurts.

I may not have celiac but I have gotten so much information on other problems from this message board that I'm going to keep checking in here.

Thanks,

Robin

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I dont go back to the doctor until May 7th :( . I guess I just get to suffer until then. The only thing he said so far is to stay away from coffee, chocolate, alcohol, and spicey foods.

The pain when I swallow hurst alot. It doesnt happen all the time, just occasionally. The food gets stuck and I have painful spasms until the food is able to go down. It can last a minute or two. I dont know how he is going to treat this. I am going to eat small amounts during the day, it is bad to over eat. As far as the ulcer if it is h. pylori you can take antibiotics to get rid of it. He has me on prilosec otc. He did say that this can be the cause of all my problems. He still did the biopsy for celiac as he has not ruled that out yet.

Keep me posted on your results. I am curious if it is the same thing since the symptoms are so much alike

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what have you heard as far as them not having figured out all the genes that can cause celiac? I was 100% happy till I read your post. Now I'm just 95% happy. I know more than dairy effect my daughter and myself

Robin, I am sorry that I made you question your results and diagnosis of no Celiac. I was told this statement by one of the few doctors I trust. What I think he meant about it is that those genes (DQ2 & DQ8) are the only ones they currently believe to cause celiac, but he also believes the lesser gluten intolerance genes are the same disease only not as severe. I think he would like them to be listed as the same disease. But then there is also the possiblity that they have not identified ALL of the genes that would predispose a person to celiac disease.

Do not rule out gluten as your problem. My sons do not have celiac disease genes, but they do have gluten intolerance. They have positive antibodies and show marked improvement on the diet. You may just be gluten intolerant and not Celiac.

God bless,

Mariann

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • 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. 
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