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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.

Before I Visit The Doctor Could You Help Me?
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15 posts in this topic

Hi everyone - I have a question regarding celiac. My neighbor was diagnosed 1 year ago after believing for at least 10 yrs. that she had IBS. She says I ought to just go to my doc and get a blood test to see if I have celiac. I've spent my whole life (since 3 yrs. old and now 42 yrs.) suffering with what has been diagnosed as IBS. Many, many years of constipation (over 1 week without bm most of that time), and alternating with diarrhea. Terrible bloating, gas, discomfort and general ill feeling and at many times when it's at it's worst, fatigue. Lately it's been daily diarrhea over if I'm "lucky" every two days!

My question - after years of doctors saying I have IBS (first it was called a Nervous Stomach - hospitalized for 1 week when 3 yrs. old for bad pain and after a battery of tests docs couldn't find cause), then it was called Spastic Colon and now the newest name - IBS.

The biggest problem is that I am NOT skinny. I've battled weight problems for years, have been told I'm hypoglycemic too. So - question is: will a doctor even entertain a test for celiac if I go in asking for one and I'm overweight? Are most doctors diagnosing celiac only if patients present with low weight?

I may not have this problem at all but right now I feel a bit desperate for an answer. I often can't exercise because I'm so sick with diarrhea - and for years constipation (which is still a problem regularly too).

I'm hoping that with even this diagnosis, should it be celiac, I might be better off because then I can control it and feel better every day.

I really appreciate your time answering and I hope I'm not repeating somebody elses question here...

Chantalle

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A good doctor would not refuse you the test because of your weight. I wasn't underweight (though no longer over weight), and my doctor didn't really say anything about that. I'd certainly ask.

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I am overweight. My doctor said that only meant that damage to the villi was not yet severe enough for the diarrhea and weightloss. She used the diet results for a diagnosis of celiac sprue, and told me that I must be gluten-free for the rest of my life. Constipation is part of the problem that I have. Yes, it is caused by the celiac sprue. I read people saying how great it is to have a formed stool, and I think, "How wonderful, to be able to dirty every day!" A good doctor will listen to you and consider celiac. Talk to your doctor.

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I lost 35 lbs AFTER I went gluten-free...and after the constipation/IBS symptoms subsided!

And I, too, had the runs alot. When I first heard about celiac disease, I "googled" it, and read every single link that came up, and I mean every one, and I found out that our symptoms include both over-and-under weight body types. May I suggest what worked really well for me? Google Celiac Disease, check out a whole lot of sites until you find a few that list symptoms and print out a couple lists. Then highlight your symptoms to bring to the doctor's with you. I couldn't believe the varied and seemingly unrelated symptoms I found listed that I had been suffering from! My doc took me so seriously that he said I had made a "brilliant self-diagnosis"! Read as much as you can before you go--the internet is rich with info...and don't get discouraged. I was sick for my entire life--I'm 46--and was just diagnosed in January! It takes the average celiac disease 11 years to get a diagnosis! You aren't crazy, you're sick, and if it's celiac disease, there is plenty of help and support here for you. Good luck!

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WHen I was first trying to get diagonsed I went to 2 doctors and they both told me told me I would be skinner if i had this dieses ,anyways I got referred to a specilest and her first question for me was did u ever hear of celiac.I asked her about the weight thing and she told me it doesnt matter about that some ppl are right skinny but not all ,diestishion told me the same thing.Turns up I have celiac.I was clinic diagonsed gotta wait 2 years to get a biopsy .

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I used the symptom list published in the Feb issue of Woman's Day. I had ALL of the "atypical" symptoms. I think it was Feb 18 issue.

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It is in the Feb 17, 2004, issue of Woman's Day. The article is titled "Disease in Disguise."

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It was that Woman's Day article that got me to the doctor's! I swear it saved my lfe! I used to lie in bed, dog sick, worrying what my life would be like when I was old and gray (grayer!) if this was how terrible my life was already! I immediately went on a celiac disease website and found a picture of a child with a small lesion near the corner of her mouth--with the caption that if a child presented with this sore to have her tested for celiac disease. Well, that was the ONLY symptom my 11 year old daughter had! And she tested positive and her gut was a wreck! We are now doing great! And all because I have a subscription to Woman's Day!

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I wound up with my subscription by accident. Someone ordered it through a school fundraiser my son was doing, and never paid for it. As the parent of the child doing the selling, I had to pay for it. It made me angry when it happened, but after reading that issue, I'm happy!

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Hi, I am new here. I am going to the library to get that issue of Women's Day.

I have been doing gluten-free for the last 8 days and what a difference already! Up until 2 weeks ago I had never heard of celiac. On a totaly unrelated forum, someone mentioned that her husband had celiac, what his symptoms were, etc. and then I did internet searches and I was floored. I have so many of the symptoms, except for weight loss.

As a kid, I had canker sores, the sore cracks at the corners of my mouth, bloated and constipated. About the age of 14 I got extremely itchy rashes on my legs and arms that the family doctor back then said was due to allergies. I looked at the pictures of DH and the rash looked exactly like it, no matter what "ointment" he prescribed, nothing worked. It finally went away when I was about 26, but as I said, it is back. I have severe reflux, bloated, abdominal pain, and now I have been having diarrhea. When I was 14, I had my tonsils out and hemorrhaged. I had fertlity problems, but managed to have one son, who was born early and I hemorrhaged. 10 years later, I managed to get pregnant again, but miscarried at 4 months and hemorrhaged so badly, I almost didn't make it. I have bad allergies and asthma. I've never had a hemoglobin test that didn't say I wasn't anemic. How could the doctors not know? How could I have never heard of celiac?

My problem now is that I don't have any insurance until July. From reading all of the posts, I understand that I would have to go back on gluten to get good results from the tests. I DON'T WANT TO!!! The difference with not eating gluten and no dairy is amazing and I have even lost 4 pounds since starting eating this way.

I think I am going to go with enterolab, so that I know, but will give a lot of thought to getting the other tests. I mean, the doctors were so clueless for years and thought I was just being a pain in the butt. However, the minute we have insurance on July 7, I will call and get an appointment to have my son tested. He has also had reflux and either diarrhea or constipated since little and the doctor says that it is because he is a nervous person. DUH!!! I think the first year of his life, he saw about 7 different doctors. Now, they have him on reflux medicine, but he still is either constipated or has loose stools.

I hope this isn't too long, but yes, I am chubby too.

bluebird (Lynn)

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what I'm reading is there going to eliminate the endoscopy, which just confirm the

Tgg test that will show your anitbodies are over >30. I would get the Tgg or stool test done pronto and then you will know. Why you would need a clinical diagnosed

(which I did Like a dumby on 7 Jan. 2004), I don't know. Just so you can be discreminated against with health insurance, life insurance. Ps, if your child is,

they won't be able to join the United state military an experience I woulnd't have miised for the world, etc etc. I would find out and keep that knowledge to myself, except for family and friends of course.

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I got my results today and my bloodwork for celiac came back negative. Now, I should be elated right? I'm not unhappy about it, however, I still feel ill and in a way it would have been an answer to all the questions, you know what I mean? My neighbor who has just found out recently she has celiac felt that way. She said, yes, it was a pain to deal with the eating, but she just felt relief because she now knew what the problem was. Her two sisters were tested as well after she found out she had it. One sister had results that were borderline, was re-tested and it came back negative. But this sister has all the same symptoms as my neighbor. ???? My neighbor feels that she should be looked at further.

My doctor kind of quietly said that she didn't really think I had the symptoms for celiac and I think she was referring to the fact that I'm not underweight. In the end she gave me samples of pills to treat IBS and a referral to see a gastroenterologist. Mainly because I've had all these same symptoms since 3 yrs. old, not because she thinks I might have celiac. She did say that the specialist would decide if I was a candidate for a biopsy.

However, I did test positive for lactose intolerance! She had decided to test me for that because my symptoms do sound like those of lactose intolerance. She said I wasn't off the charts or anything but that the results mean that it's like you can't be just "a little bit pregnant". Either you are or you aren't. I just can take pills prior to eating lactose and I'll be fine there. But the thing is, I don't ever drink milk and don't eat yogurt. I only eat cheese on occasion. So having these symptoms so often and so bad can't be from lactose to my way of thinking.

Lisa - thanks for your understanding message. Depression is always hard to deal with. I take a very low dose anti-depressant because I have horrendous PMS and was suffering badly for 2 to 2-1/2 wks. per month! My husband just LOVES these pills! As do I! I couldn't go off them - my life did get so much better with them. I have a friend who takes two different kinds of anti-depressants at the same time. And I'm the one that made her go to her doctor - she didn't realize how bad she was - but I sure did. Her life is so much better now.

I asked my doctor what tests she did for celiac btw. She told me, but I just don't know if it was for the 3 things normally tested as per the information on this site.

Thanks for listening. I'm more determined than ever to find out what's wrong. I've decided to clean up my diet and make sure I'm lactose free. But I'm not going to go gluten-free yet. Although I think I will try it even if the specialist says I'm o.k. and don't have celiac. There has to be something irritating my bowel....

Long letter - sorry! I'm a super fast typer!

Chantalle :rolleyes:

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I wish I was such a fast typer, it takes me forever to get a lengthy post done! :P I'm soooo jealous!

Your very welcome! Don't give up on this being your problem yet, if you read others experiences you will find that many people that now know they have Celiac were first told that they did not by their doctor. After reading everyone else's hassle with getting a proper diagnosis and because we did not have the money to spend only to get the wrong diagnosis, I (and my Mom) decided to skip to the end and just eliminate all gluten for 6 months or so and see what happened. Since that is the final diagnostic test anyway, why go thru the rest unless you have someone else to convince or you don't suffer enough yet to commit to the diet if you don't have to. After all we have been thru, it was no problem at all and if it could be the answer I wasn't going to waste another day. We started the new diet and within a few days I knew we were on to something, within 2-3 weeks we were sure. Others may take longer, up to 6 months and that is why I wanted to commit to that length of time in my mind.

There is also Enterolab, if you do a search under that word you will see other experiences with them and there results are more sensative and accurate in my opinion. They are the leading lab on Celiac and are in the process of receiving a patent on their testing procedures. Your doctor may not agree, but I believe you have to look at the doctors motive for discouraging you from getting the testing done yourself directly (ie: $$$$$$ <_< )

All the main stream testing done is up for interpretation, and there seem to be too many variables and no clear cut answers. Enterolab looks for the genes for Celiac and if you send in a fecal sample they look at malabsorbtion to see if your intestines are not doing their job, a much better system.

In the end, this may not be your problem, but something is and you ultimately have to trust your gut. You know your own body better than anyone else...listen to it and trust yourself. Goodluck sweetie and keep us posted! :D

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p.s. I know exactly how you feel about being disappointed in the results by the way. I would feel the same way, what you want the most are answers and an action plan. And this is something you can easily control, unlike other health problems inwhich you are simply stuck or can only look forward to going down hill.

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Chantalle, I recommend you get tested through enterolab. Out of the three blood tests only one of mine came back positive and it wasn't the main celiac disease test. However through enterolab all came back positive including Milk sensitivity. Plus I have two genes that predispose me two gluten intolerance. And I didn't even have very many symptoms like you. I actually started having hypothyroid symptoms such as depression, mood swings constipation etc., after a little research and founding out gluten intolerance can trigger autoimmiune thyroid problems I was tested for both thyroid and celiac disease. And when blood test were questionable I did the stool and gene test.

Hope this helps.

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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