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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.

How Many Of Your Gi Doctors Were Willing?
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34 posts in this topic

How many of your GI docs were willing to accept the fact that you had Celiac`s??

Mine took months worth...three months worth

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I had been ill with vertigo, dizziness, and an abnormal heart rate for over a year, then when I began to display gastro symptoms such as diarrhea and weight loss, I went to the Mayo Cliinic in Minnesota and the first test the dr. ran was for Celiac Disease. The blood tests were postive, so when I returned to my home dr., he suggested a biopsy right away, and the diagnosis was confirmed. My dr. at Mayo who orginially told me about celiac disease was of Indian desent, and I believe this is part of the reason celiac disease occured to him....most American doctors are simply not trained in looking for Celiac Disease. I've seen European doctors from time to time and they always seem more well versed in celiac disease due to the popularity of the disease in Europe (it is generally a routine part of a person's blood testing over there even before the age of 5.) Many people on this site have a very hard time even getting their dr. to blood test them, which is crazy. I suspect more than half of all "IBS" patients are actually celiac disease sufferers.

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You are so exactly right!!! I was diagnosed with "IBS" for the last 8 years or so.... I suffered with more than horrible pains for all this time and no one would do anything to help.

My family doctor is still a schmuch...... but since I am on state assistance I cant choose my doctor. Its a whole messed up situation.

Anyway, My doctor says I do not have Celiac because she tested me for it with blood work eventhough I told he odds of it coming out positive were slim since I was alreay on a gluten-free diet. She insisted that it would come out with accurate results either way and that shes right and that I had been mis-informed.

I pretty much diagnosed myself with the help of a dietition since starting a gluten-free diet was the only thing that helped. My dietition has helped with the start of my recovery but I can only get so much help with the medical field till I can prove to them the way I feel is got to be Celiac sonce nothing else helps.

Still my doctor wont do anythign about it. my next appointment is the 25th of this month and she wont bump it up as an emergency one.. which means if I dont get a note saying whats wrong with me the caseworkers and my boss are going to go against me and take away my state money. and then how am I going to pay my bills....

Ive been losing jobs, no one understands... I need doctors notes for work and the DSHS people... What am I supposed to say so that they'll understand??????? Its like no one believes me!!! AHHHHHHHHHHH :(

Anyone having this problem???????? I wanna work but i am too sick all the time to. And no one believes me!

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SadiesMomma,

Get a new Dr- if your current one is so horrible, why are you sticking around? I too had to beg my Dr for the bloodwork. I took the test on June 10 2003 and called the office for 2 weeks straight to find out the results. They did not call me back until July 3rd. When I asked them to fax me a copy of my bloodwork, it indicated that they recevied the results back on June 13. They waited 3 weeks just to call and give me my results. So, I changed Dr's and I am so much happier now.

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I also am unable to work due to this disease affecting me so badly. I don't know if I have a shot at collecting disability, but I'm about to try. You should do all you can to change doctors...my doctor has said some pretty stupid things about Celiac Disease, but even he knows you MUST be eating gluten for a long while leading up to your blood work and biopsy, or the tests will be negative. The fact that your doc doesn't know that much makes her seriously misinformed. If you switch docs, then you could gluten-load for a while and get positive blood results, which will help you have a legit diagnosis and therefore help with your work situation. Hang in there!

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I've had symptoms since I was younger than 4. I've been diagnosed with IBS for 17 years. In the past 32 years no one ever mentioned celiac disease in all of the hundreds of times I've been to the doctors and all the dozens of doctors I have seen. I brought it up to my doctors over two years ago and have come up empty. None of the earlier doctors would test me for it and when I finally got tested last year (after being gluten-free off and on a few times) I was negative on both the blood and biopsy. But Enterolab gene & stool tests say I am positive. My current doctors refuse to believe me. Well I don't plan on going back to the GI, and I plan on just telling my regular doctors that I do have celiac disease. They can think I'm crazy if they want to, but they didn't have to spend 32 years in my body, with all the aches and pains. I would love to have my doctors believe me, but I will apparently have to wait until they catch up with technology, and recognise that the tests I had done at Enterolab are valid tests.

Mariann :)

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I too suffered with GI symptoms for years and was told I had IBS. I took the Enterolab route and was diagnosed last Sept. I faxed my results to my GI doctor because I was having other problems. At first he defended all he did for me and was not keen on the results I had received but then I told him I had improved on the gluten-free diet and he changed his mind and accepted the diagnosis.

It would not have bothered me if he didn't accept it because I was there to see him for other problems and would NEVER go back on gluten to satisfy him or any other doctor.

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Is it my dumb luck, or living in California - land of the fruits and nuts? My GP did the blood work for me (a good panel), and when only one test (and not the tTg) came back slightly positive, she suggested I do a dietary challenge, and has accepted my verbal report of my results to her. My gyn specialist accepted it at face value as well, but he's gotten used to seeing a lot of his vulvar vestibulitis patients having celiac or other food sensitivities. My allergist... he doesn't want to believe me, but since he doesn't live in my body, he doesn't have to - he just has to prescribe gluten-free meds, 'cause I won't take any other ones. ;-)

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We have been at it since last august.. when we first took my son to the doc for chronic diharea. Our regular doc suggested a gluten-free diet and a trip to the GI. Well we did the diet and he got better wish we hadn't we might have gotten more results with the GI then. On Monday his next appr I plan to ask for a blood panel since the doc already saw fit to do an endoscopy (neg) I think I have the right to ask for a simple blood test. ;)

Especially since the 10th of Feb my little guy has had exactly 5 formed bms.. the rest.. ick.. so we are back where we started.. mabye now he will listen. <_<

But I knew before I went to this guy he was a tough sell.. I wanted to deal with the children's hospital so I pretty much have little choice in the doc..

Denise

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My doctor was the one to say celiac. She thought of it only the second time she saw me come in sick. The first time I was sick it looked like just really bad food poisoning, but the second time she said you just don't get this sick twice without an underlying condition. My immunoglobulins were low, so she checked my IgA, and when that was low she said celiac is genetically linked to that, so she checked that. I know I'm lucky, lucky, lucky.

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It took 3 visits to my PCP to get blood work and he told me I had celiac disease.

I was so sick I thought I had a stomach virus. I had lost 10 lbs by my third visit so I think he caught on. But talking to my GI he told me if I hadn't been so sick it probably wouldn't have been picked up on.

My problem now is my GI (whom I like and respect) keeps hinting around that I have Crohns. Can't they do a test for that? I already had a colonoscopy and he found some inflammation not related to celiac disease or he thinks not related to celiac disease.

It does seem every time I see a doctor I walk away with more questions than answers.

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From what I have read on this site, I was very, very lucky to get to a gastro that did biopsy right away, and actually knew what she was looking at.

I remain forever grateful to her.

Blessings to all.

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We ran the gamut with doctors for my daughter...but she didn't fit the "profile" so celiac disease was not considered. we talked about crohn's and ulcers and all the rest but then her doc just pulled it out of the hat and we love him forever. I've had these symptoms since i was little(i'm 39 now and was diagnosed with an ulcer at 8)and everything but celiac disease was considered. My mom was on Medicare and sick for years and years, but alot of Medicare patients are like state assisted patients, they don't get the care they need. My mother's doctor(not speaking in generalities here) saw my mom as "old-lady-on-medicare-don't-waste-energy", and so she died.

And call it what you will, i do blame this doctor. My mother had to beg for a colonoscopy even though the danged tumour was big enough that you could feel it from the outside. Her oncologist wrote up the doctor since it was his firm belief that if it had been caught even 6 months prior we could have had a fighting chance. Instead, she died 6 weeks later.

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Hi!

I'm new to this forum, so please excuse and correct any wrong behavior.

Thanks.

I had become convince I had celiac disease by reading "Dangerous Grains", so I got the name of a GI doctor in San Francisco from the list on this website. He was great and did the endoscopy and biopsy, which was positive. However, he said that he spends a lot of his time training other doctors and labs in how to read the biopsy reports, because they commonly misdiagnose if they haven't been really trained to spot celiac disease. As a matter of fact, I got a copy of the biopsy report (I always try to get copies of all my tests), and it said that based on the percentages, it was negative for celiac disease. But my GI had written on there that my score was actually high enough to indicate celiac disease. Now, how many other doctors, who don't specialize in celiac disease, would have just read the report and sent the patient to a psychiatrist (which happened to me)?

I got the wrong diagnosis from about 20 different doctors for 51 years, but then, most of this info is brand-new, and I didn't have the classic symptoms. When I was a kid, in 1966, I worked as an aide in nursing homes. I remember a poor old woman who I now believe must have had celiac disease. Every time she ate, it went right through her, immediately. It was just awful. Besides the pain and being sick all the time, she was just humiliated and so apologetic every time. If I have to have a disease, this is the one to have. All I have to do is watch what I eat and I can have a normal life. I'm really amazed because I have been sick for so long. I'm so glad to have found this message board, I was feeling pretty isolated before this. Thanks!

Gerri

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It has taken the Doctors 14 years to diagnois me. I have been told I have Lupus, MS, too much stress(I hate that word), I am crazy, and need to see a head Dr. With each diagnois, my depression was growing. Finally, I said LOOK, I am not stressed. Made them take a stress test (no stress), and I am not crazy, I am really sick, and my systems are REAL.

Now the story has changed. Boy, we are sorry. You have probably had CF all your life as it is inherited. I have rhumitoid arthritis and a tumor on the thyroid they are watching, not to mention something swollen under my right chin the size of a ping pong ball(it has been this way for 3 years.) Three different doctors have looked at the same CAT scan, and each one says it is something different. One said it is a cluster of Lymph nodes, one said it is a bone, and one said it is saliva glands which have melfultioned because of the arthritis.

Anyone know a good Celiac Doctor in Cedar Rapids, Iowa?

Theresa

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What is rhumitoid arthritis like? symptoms? I have been kinda hesitant to ask my doctor in fear that they think im nut for going there about every little thing. I just dont know though. I get severe pain in my ankles, shins, feet, knees, wrists and hands and fingers... I dont know how to explain it. I am 21 years old and experiencing pain almost daily. The pain in my hands gets so severe just a minute after beginning to write that I just dont do it anymore eventhough I love doing it. Also I cant go on long walks. I used to be able to do every sport, now I can barely walk to the mini-mart down the road without aching all over for the next day or so. Is this anything like arthritis? Anyone know what it could be?

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You might want to look into fibromyalgia -- what you're describing sounds similar to some of my friends who have fibro.

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Wow.. serious? What is that? Can it kill me? :(

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Heather,

No, fibromyalgia won't kill you! :) I believe the word means "muscle-fiber pain." It's one of those "syndrome" diagnoses where doctors don't really know what the cause is, but they have some theories and are working on some therapies that may produce improvement in symptoms. I have read about it in connection with chronic fatigue syndrome. You might be interested in checking out this website for one theory on the origin of these conditions. I hope this helps!

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Rheumatoid Arthritis (RA) is an autoimmune disease which has been indicated as having a possible/probable link to celiac disease in just about every medical article I have read.

RA is a crippling disease that causes extreme pain to the sufferer and often progresses from the pain to deforming the hands and feet. There is no cure yet, but people who are newly diagnosed, such as my husband, are now being treated aggressively with immune system suppressants, which help to keep the body from destroying itself, but in the process keep it from protecting itself. If you are in that kind of pain, I would highly recommend that you see a rheumatologist immediately. They can test with a blood test and get you treated as soon as possible. If you do have RA, delay can really cause major problems. A friend of my husband's died recently at the age of 33 because it had gone into her heart, and we have friends who are in and out of the hospital all the time. This is nothing to fool around with.

Even if you don't have RA, there's obviously something very wrong. People are not supposed to be in that kind of pain. My husband was misdiagnosed for years, carpal tunnel, tendinitis, etc. He was living on handfuls of aspirin and Ibuprofin. From your signature, I can see that you have taken your health very seriously. You have eliminated all of these problem foods from your diet, which is really hard to do, so you are obviously not a nut. If your doctor treats you like a hypochondriac, I would find another doctor fast and don't look back. If you would like me to send you some articles to show your doctor, feel free to email me privately and I would be happy to do that. sfpaperhanger@aol.com. Best of luck!

Gerri

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SadiesMomma is correct when she states that she really can't shop around for doctors. The average American would be surprised to learn that most doctors don't treat Medicad patients. I put my mother in law (82 yrs old) on Medicad and I was under impression that that's all she had; so I called her doctors to tell them that she has changed over to medicad & they freaked out and told me that they could no longer treat her.....then they asked me if I dropped her from Medicare, to which I replied no. That makes the difference for a senior citizen, but young people who are forced to go on Medicad it's different. The problem is that doctors don't get reimbursed by govt enough for Medicad patients and if govt increases the payment to the normal level, the rest of us get higher taxes. It's a no win situation I tell you.

Same thing with my disabled brother. I called a back specialist who is the only Dr. in NJ who does some back procedure & in speaking with his office once they found out that he was on Medicad, they refused to treat him. Unbeknownst to me he too was on dual Medicare and Medicad so if he wanted it, they can treat him. I told this doctor's office that I hope that this doctor never finds the cure for cancer because he would only use it for the paying patients. The receptionist was speachless after that comment but she got my point.

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Seems everyone's stories run the same. I am still undiagonosed, but on a gluten-free diet, because even though my doctor "poopooed" testing me she said "cutting down on "carbs" may help me feel better and lose weight" as she is writing me yet another IBS medication Rx (I am 115 pounds - I don't need to lose weight!). I don't think she has any clue how serious celiac can be, and she wouldn't even pay attention to the article I had about the disease. I was diagnosed with hypo-thyroidism at 18 after becoming pregnant, IBS about a year ago (I am 27 now), was diagnosed with juvenille rhumaoid arthrits at 2, and have always had stomach problems, but my extreme fatigue didn't come until I got pregnant...but it has never left. The possibilty of celiac disease came to me when I found out my first cousin is gluten intolerant, and I started researching. I am positive I have it, but have not yet found a doctor who will test for it. I am working on getting some insurance now, go back on gluten, and I will insist on testing, if that does not work out I plan on going the Entrolab route. I am so glad I am not alone, and I am grateful for all of you that are here. =)

Deanna

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I am so angry and frustrated reading these postings I could scream! It just shouldn't be so impossible to get a lousy blood test in this country! You guys have done such a good job at figuring out what's wrong with you, all you're asking for is a little support from your doctors! If I had to start over, I would go to the "Publications and Publicity" section on this site and print out the posting under Launch New Campaign On Celiac. THAT'S what I would give to my doctor, as it directly addresses the lack of information in the world of modern medicine regarding celiac disease, and what is being done to remedy it, including resources. It's geared toward pediatrics, but I wouldn't hesitate to give it to my doctor, since it talks about adults, too. It addresses the need to have physicians add celiac to their "screening checklist"...amen to that! To all of you who are struggling with clueless medical professionals (I use that word loosely) let me say don't give up the fight! Keep at it until you get what you need! We are all here for you! A big hug to everybody...

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Deanna,

You NEED to find a good celiac doctor. Where do you live? I am 29 and I self dignosised this by going to my hemotologist with a list of blood tests that I wanted to test for. You need to do the same. Don't stop until you find a doctor that will help you. I will keep you in my prayers and I can refer you to some good doctors in California (South Bay) and PA (where my mom and brother are).

Lisa

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My doctor has been great. I had a negative blood test and yet was still referred to my GI doctor because lucky me I am so deficient in B-1 I have beri beri. The GI doctor says it just seems so much like Celiac disease he is going to do the endoscopy.

I dont know what is going on but I certainly appreciate the open mindedness of my physicians.

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    • Help understanding test results??
      I forgot to add this...I only had one positive on the complete celiac panel.  I had a positive on the DGP IgA test, my visual endoscopy "looked fine" but my biopsies revealed a Marsh Stage IIIB (moderate to severe villi damage).  My symptom at the time was anemia.   Keep eating gluten daily until all testing is complete.  This is really important!   Hang in there!    
    • SO HUNGRY. All. The. Time.
      Over my 6 gluten-free years, I have endured this "Starving Syndrome" several times.  Actually, I have lost count.  I am 5'4" and frequently eat more than my 6'4" husband.  My weight has gone from a low of 93 lbs. to my current high of 105 lbs.  I eat as much as I possibly can.   I agree about the fats helping me to feel full.  I'm beginning to test out the "grain hypothesis" as mentioned above. It seems (feels) to me that when I go through a major healing spurt, my body just wants more food!  No idea if this is actually what is happening.  Still, I have come to look at it as a "good thing" when my body wants lots of food.  I just relax and try to give my SMART body what it wants.
    • I got WELL!!
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    • I got WELL!!
      Posterboy, Many, many thanks for providing such complete information.  Your efforts won't go to waste.  I will look into each item you mentioned. Not sure the iodine is an issue as I no longer have a thyroid.  And too much iodine can aggravate my intermittent rashes.  (Never was tested for DH.  Didn't see the point as I was already diagnosed with Celiac.) Thanks again!
    • Celiac in 10 month old?
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