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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sitting On Pins And Needles
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13 posts in this topic

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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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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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 was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
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    • Confused
      I have not. I'll talk to my doctor about it
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