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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.

Two Docs With Differing Opinions
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My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

I do not want to ignore something that might being neglected if this truely is not celiac but I am wondering why I am continually getting better off glutens, and why all the other stuff I have been thru that I have answers for in connection to celiac if this is not celiac??

It would be nice if I could locate a doc with some expertise on celiac.

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Can you stay with the new doc? If you also have something else going on being gluten free isn't going to mask it or prevent it from being picked up in tests. It sounds like your old doctor may not like that after your being ill for a long time and him not being able to figure it out someone else has. Might not be the case but I would change to the new more celiac savvy doctor if that is possible.

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It sounds like this doctor has no real experience or knowledge of Celiac Disease or even auto-immune diseases. Can you stick with the 'new' doctor? If not, did you ask the 'old' doctor why you feel better and have improving symptoms since going gluten-free? If he says it is "all in your head" (I got that one from one of the docs I was seeing prior to diagnosis?!?!) you NEED a new doctor!

Also, I've dealt with military doctors in the past and while some have been great some have been absolutely the pits -- if they can't figure it out right away it obviously isn't a 'real' problem at all (back to "all in your head!") A couple of them also did not want to admit they did not know absolutely everything about illness and injury, as if admitting a lack of knowledge diminished their worth or something. Personally I'd rather have a doctor who will admit to not knowing something (as my GP did once I was diagnosed with Celiac Disease -- he's been amazing, doing lots of research on his own and always listening to anything I say that I've learned about Celiac myself!) than be dismissed out of hand because they were less than an expert in an area.

Where are you located? Any Celiac specialists in your area?

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Can you stay with the new doc? If you also have something else going on being gluten free isn't going to mask it or prevent it from being picked up in tests. It sounds like your old doctor may not like that after your being ill for a long time and him not being able to figure it out someone else has. Might not be the case but I would change to the new more celiac savvy doctor if that is possible.

For some reason, doctors have this idea that being gluten free is an inhumane and profound hardship. It is baffling to me, since other people willingly eat fad diets or kosher diets or vegetarian or vegan. No one gets more crap for their diet than celiacs do, and it is a complete mystery.

From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.

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My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

Let me get this straight. You are asking whether to trust a liar? Stick with new doc. He sounds good.

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Sounds as if he does not like being contradicted by NEW doc. :rolleyes:

Weren't you improving and finding relief from being gluten-free?

What do you think explains this improvement???

What did he make of that???

How are you lab tests now?

Not sure what the dilemma is here, hon!!

New doc, new diet = you feel better.

:)

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There are good docs and not-so-good-docs...and it's not always intentional. For too many years we put doctors on pedestals and assumed they were always right and we did what they told us to do. Unfortunately, or fortunately (!) the human body is a very complex thing.

In my very humble opinion, 100 years from now we may very well look back on on medical knowledge and think we were in the dark ages in 2011. I also believe that as patients, we need to take an active role in our care...which is exactly what you've done. Trust your own instincts. Listen to your body.

Stay with the 'new' doc... ;)

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And you're wasting your time with this incompetent person, why ?

I don't "officially" have much of my auto immune diseases, either, because of the way the health care system in the United States changed in the late 1990's and began to reward incoherence and shuffling patients from one doctor group to the next, and I moved from one state to another without taking full medical records.... not that it would have mattered, I have had deliberate crooks, aka medical specialists, only interested in the initial consultant reimbursement look at x rays showing damage and declare "you don't have arthritis" when I've had one who wasn't so in on this racket be shocked that I am not a complete invalid with this much visible damage. At least this one (who also tested me for antibodies after years off of gluten ) humors me on the "gluten intolerant" part. And I was diagnosed in the 1980's with this supposedly "no cause" condition. That's 30 years of idiots, some of which who were shockingly nasty about it, telling me there's nothing wrong or that I'm making it up, and there is no end in sight for my lifetime. Thanks, insurance industry !

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My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

I do not want to ignore something that might being neglected if this truely is not celiac but I am wondering why I am continually getting better off glutens, and why all the other stuff I have been thru that I have answers for in connection to celiac if this is not celiac??

It would be nice if I could locate a doc with some expertise on celiac.

Did this genius suggest what the problem is if it isn't gluten? Offer any new tests?

You're a smart lady. What do YOU think?

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Time to FIRE a Doctor, case closed...!!!!!

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pretty simple. if being off gluten is working..then...well...you got your answer. every doc has their on beliefs, biases, and proclivities. it sounds to me that you already have your answer but this quack has you bothered a bit.

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It sounds like this doctor has no real experience or knowledge of Celiac Disease or even auto-immune diseases. Can you stick with the 'new' doctor? If not, did you ask the 'old' doctor why you feel better and have improving symptoms since going gluten-free? If he says it is "all in your head" (I got that one from one of the docs I was seeing prior to diagnosis?!?!) you NEED a new doctor!

Also, I've dealt with military doctors in the past and while some have been great some have been absolutely the pits -- if they can't figure it out right away it obviously isn't a 'real' problem at all (back to "all in your head!") A couple of them also did not want to admit they did not know absolutely everything about illness and injury, as if admitting a lack of knowledge diminished their worth or something. Personally I'd rather have a doctor who will admit to not knowing something (as my GP did once I was diagnosed with Celiac Disease -- he's been amazing, doing lots of research on his own and always listening to anything I say that I've learned about Celiac myself!) than be dismissed out of hand because they were less than an expert in an area.

Where are you located? Any Celiac specialists in your area?

I am in Gerany and I have thought many times of going to a German doc. I am sent off base for certain things and it was thru the University hospital in Heidelberg that a German doc determined I diod not have hypercalcemia which my old doc thought this was. German doc took one look at me and said I can tell you witghout running any tests that you do not have hypercalcemia. However, he did tests that the military docs did not run and it was determined. Since being on a gluten-free diet my calcium levels have never gone back up again, all my parathyroid tests have turned out fine.

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Did this genius suggest what the problem is if it isn't gluten? Offer any new tests?

You're a smart lady. What do YOU think?

Thanks Prickly, I have done way too much research and did everything possible, mostly on my own and with the help of you guys here to figure everything out and there is no way I am taking steps backwards at this point. My husband and I sat last night and the very first question he asked was the very question you mentioned here. In all the tests that I went thru for 7 months with no answers, this man (old doc) could not, and still cannot give me an answer.

If this is not celiac, that leads me to MS (still have not seen my MRI, only know I do not have tumors), Parkinson's, alcoholism, or HIV due to the improvement on the gluten-free diet and the neuropathy isses I have. I know I can rule out HIV and alcoholism. Ugh, ugh, ugh.

I am going to see what I can do to get my primary health care provider switched to the new doc that diagnosed with celiac.

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From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.

This chain has so far been an excellent critique catchall of some of the worst our medical system has to offer. I am enjoying reading everything.

However in response to the quote above, I will say that a doctor - and an old school doctor at that - diagnosed my celiac disease. It was almost through luck, so I won't attribute it to an open mind necessarily. Still there are things that drove me to distraction about his practice, so I started to look elsewhere for a GP. I wanted less wait time (less than 1.5 hours, let's start with that, shall we?), a doctor who spent at least 20 minutes with me. I got online, read the reviews, and found one of whom lots and lots of people had written glowingly about, most especially those with celiac disease. The 'experience' of it was so good. So I went. And yes, she did spend a lot of time with me and the wait time was blessedly short. But when I brought up celiac disease and how I had dealt with one doctor in a different city who had dismissed my concerns about gluten-free medication, she seemed to also dismiss that as a concern. She started on about how the gut needs to heal and the implication I was drawing was that once the gut heals that there is less and less need to be concerned about gluten. We did not continue down that path much (I was actually there about something else), but that never stopped tickling me.

So now my choices are: a doctor who spends time with me but seems a little fuzzy about celiac disease (even though those with celiac disease have recommended her!) and a cattle-call doctor who knows about celiac disease but makes me wait 2 hours in his waiting room and sees me for 7 minutes.

Plumbago

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From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.

This chain has so far been an excellent critique catchall of some of the worst our medical system has to offer. I am enjoying reading everything.

However in response to the quote above, I will say that a doctor - and an old school doctor at that - diagnosed my celiac disease. It was almost through luck, so I won't attribute it to an open mind necessarily. Still there are things that drove me to distraction about his practice, so I started to look elsewhere for a GP. I wanted less wait time (less than 1.5 hours, let's start with that, shall we?), a doctor who spent at least 20 minutes with me. I got online, read the reviews, and found one of whom lots and lots of people had written glowingly about, most especially those with celiac disease. The 'experience' of it was so good. So I went. And yes, she did spend a lot of time with me and the wait time was blessedly short. But when I brought up celiac disease and how I had dealt with one doctor in a different city who had dismissed my concerns about gluten-free medication, she seemed to also dismiss that as a concern. She started on about how the gut needs to heal and the implication I was drawing was that once the gut heals that there is less and less need to be concerned about gluten. We did not continue down that path much (I was actually there about something else), but that never stopped tickling me.

So now my choices are: a doctor who spends time with me but seems a little fuzzy about celiac disease (even though those with celiac disease have recommended her!) and a cattle-call doctor who knows about celiac disease but makes me wait 2 hours in his waiting room and sees me for 7 minutes.

Plumbago

Isn't it something? I am floored actually. I realize that celiac has symptoms very similiar to many other diseases however, one by one we have eliminated several and I think I can ake MS off that possible list. I'll just press forward with what I know works and assume my new doc is correct.

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So sorry to hear you're having such issues with these Dr.s. Is there a posibility of seeing a third?

I've been dealing with a positive DX from a GI (through scope) and disbelief of the DX from my PCP. No explanation for my symptoms from the non-believer though.

It's so frustrating to have those in charge of our care having such opposite views! :(

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The thing is she mentioned she is getting better gluten-free. That is not going to happen if the diagnosis is wrong. Sure there might be additional issues going on, but a positive response is a great diagnostic tool. I just read an article that someone posted from an MD in the child thread where the doctor even stated using it as the simplest and very effective diagnostic tool for celiac.

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That's right--A reports she does feel better!

Best "diagnostic" tool? Symptom resolution.

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i liked that article. the doctor was speaking about latent celiac and negative biopsy celiac. He even mentioned how the old way of thinking is no longer valid.

Unless i am mistaken and missing something, i do not think a non-celiac (i do not differentiate celiac vs gluten intolerance, allergy, etc since tests fail so often) will have symptom relief with the removal of gluten. And if that is true, then BINGO.

Doctors can do a lot of emotional damage as well. How many of us have been told to live with this IBS or it was in your head or it was .. Things like that stick with you and hamper recovery.

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Doctors can do a lot of emotional damage as well. How many of us have been told to live with this IBS or it was in your head or it was .. Things like that stick with you and hamper recovery.

Yes, that is so true. The lack of validation of symptoms and suffering, and being written off as a head case by one's doctors, is a pretty shattering experience. And it does discourage one from seeking the truth, whatever the truth may be (but it is not what the doctor is telling you). Given how many people have put doctors in the GOD status box, these patients are being condemned to ill health by the ignorance of their physicians, not to mention the loss of self esteem and other emotional side effects. Good point Chad. Glad I was disillusioned with doctors quite early on :rolleyes:.

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You do not want me to get started on doctors. <_<

They literally kept me ill by misdiagnosing me. I could sue 2 of them, but I won't.

I have no faith in the AMA anymore...except, I DO like my new GI doc, but only because he is celiac-savvy and is willing to listen, follows through on my after care every 3 months--- and actually likes it that I BRING him current articles to read! :) He wants me to speak to celiac groups because he does-- and says these people need to hear your experiences so they see their symptoms are real & they are "not crazy" --as they have been told for years.

Just makes me nuts sometimes.... :rolleyes:

Have any of you read the book How Doctors Think? The first chapter is about a woman who was ill for 15 years. Misdiagnosed and ill with "anorexia and bulimia", thin hair, etc. --so the doctors thought....but she swore she ate plenty! They had her in psychiatric care...but, Guess what she had???

yup....

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So sorry to hear you're having such issues with these Dr.s. Is there a posibility of seeing a third?

I've been dealing with a positive DX from a GI (through scope) and disbelief of the DX from my PCP. No explanation for my symptoms from the non-believer though.

It's so frustrating to have those in charge of our care having such opposite views! :(

Really? This makes e feel a little less frustrated with the situation knowing someone else has been thru the same. I wonder why the hesitation among doc for celiac diagnosis.

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The thing is she mentioned she is getting better gluten-free. That is not going to happen if the diagnosis is wrong. Sure there might be additional issues going on, but a positive response is a great diagnostic tool. I just read an article that someone posted from an MD in the child thread where the doctor even stated using it as the simplest and very effective diagnostic tool for celiac.

Good to know, thank you. I have been racking my brain and researching more, eliminated MS in the process. I do not have diabetes or Lyme disease so I am thinking what else could I have neuro issues, bone loss, malabsorption along with all the gastro issues, and show improvement by taking gluten out of the diet? Something makes no sense. I have read that kidney stones can be related to celiac and I ahve had kidney issues since I was 24, have 2 lodged stones that have beenthere for over 20 years.

I am planning on taking a copy of my original labwork into my new doc and ask for an explanation for all the low marks conected to my immune system, the labwork my old doc did not share with me. The new doc is the one who gave me a diagnosis of celiac and I just want to see if he thinks those lab results coudl indicate anything else.

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You do not want me to get started on doctors. <_<

They literally kept me ill by misdiagnosing me. I could sue 2 of them, but I won't.

I have no faith in the AMA anymore...except, I DO like my new GI doc, but only because he is celiac-savvy and is willing to listen, follows through on my after care every 3 months--- and actually likes it that I BRING him current articles to read! :) He wants me to speak to celiac groups because he does-- and says these people need to hear your experiences so they see their symptoms are real & they are "not crazy" --as they have been told for years.

Just makes me nuts sometimes.... :rolleyes:

Have any of you read the book How Doctors Think? The first chapter is about a woman who was ill for 15 years. Misdiagnosed and ill with "anorexia and bulimia", thin hair, etc. --so the doctors thought....but she swore she ate plenty! They had her in psychiatric care...but, Guess what she had???

yup....

JUST CRAZY! And I do appreciate the sharing. I have asked myself a ton of questions since my appt with old doc. What I do know for sure, is that sine going off gluten there has been more than a change in my digestive system, I contribute my emotional health now to a gluten-free diet. I have been troubled with depression and have had times of great anger and have just losts it and all of tha has improved, definately not over night but I don't tend to sink so low and I can let go better than I was better. I think when gluten really messes with your body, the damage is all too hidden.

Thanks! for all the responses ansd the wonderful support here everyone!! Mushroom is exactly right, what a ride docs can put you thru emotionally. IrishHeart, keep being strong and thank you!

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The thing is she mentioned she is getting better gluten-free. That is not going to happen if the diagnosis is wrong. Sure there might be additional issues going on, but a positive response is a great diagnostic tool. I just read an article that someone posted from an MD in the child thread where the doctor even stated using it as the simplest and very effective diagnostic tool for celiac.

A positive response as a diagnostic tool! Not only does that make perfect sense but it is used all the time. In fact, the true mechanism of action--how it works--in most pharmaceutical drugs in unknown. In a very simplified way, it is hit and miss process. Rogaine (rx to treat baldness) was originally develope to treat hypertension. And if it's not necessarily diagnostic, it's certainly treatment.

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      I saw my gi today and he said to not worry about eating gluten. I have abdominal pain in the small intestine area and referred pain in my back, indicating pretty bad damage. So I'll just go without the gluten and do the genetic testing if needed.
    • Vagus Nerve Attack
      Hello All: I came across this series of posts from as Google search on "Wheat Vagus Nerve". I find all of your replies very interesting and would like to add mine for those searching for information but with differing symptoms. I have struggled with the vagus nerve impact to breathing as Maria mentioned in the original post, but only an impact to breathing and nothing else.  But my symptoms were brought on not only by wheat, but also by other ingredients such as dark chocolate, probiotics, caprylic acid, mustard, fluoride in toothpaste/mouthwash just to name a few.  I found when I sat down my breathing would return to normal, but as soon I got up, the impact would return. The impact to breathing would come 4-6 hours after ingestion and last for about the same amount of time.  At times I could not even take ten steps without having to stop, not being able to breath even moderately.  The symptoms now are decreasing in severity but not in duration. My doctor checked my blood for celiac and results were negative. A number of chest x-rays to rule out COPD.  I am waiting on an appoint with an allergy specialist in a few weeks to see what they have to say.  Needless to say, it is difficult to maintain a healthy weight. Thanks for your posts, and I hope my contribution is of benefit to others also.
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    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
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      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
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      Hi Peaceflower, Just wanted to say thank you for the chat.
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