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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Top Five Reasons To Get A New Doctor
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When your Heart Dr say's it not a big deal it just causes a little more diareah than usual I started to give a lesson on Celiac but he did't have time so I never went back to him. I thought he might think a heart that wasnt beating right would't be any thing to worry about.

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leewendy    0

Yeah where do you find a G.I. doctor in toronto ontario. who doesn't look at you like its all in your head. Before I got diagnosed last yr, I had gone to the emerg three times before that with chest pains and stomach pains, on the third time they admitted me for six days, and a week later the G.I. who did the scope, called to tell me that I might have celiac disease, but would be confirmed by getting a blood test done, well on my last visit almost a week ago, he said well sort of there is nothing more for him to do, see you in yr. what no more with him perhaps its time to find another one who knows more about this disease. ok bye from leewendy

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gymnastjlf    0

My GI told me to eat wheat toast with some butter on it before my fat absorpsion test (keep in mind he'd diagnosed my celiac the year before). I gave him a funny look, he repeated himself, again emphasizing WHEAT. Then he suggested maybe some whole wheat pasta if I wasn't into toast....

needless to say when I move next month I'm going to find a GI who knows something (ANYTHING!) about celiac around Phoenix!

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zkat    0

How about this one

I the midst of major allergic reaction to Synthroid (BP is 188/92, resting pulse is 110 normally 68) Full edema and massive hives.

Phone conversation with Nurse Practioner:

Her: "You have Hives?"

Me: "Yes, Hives H-I-V-E-S, you know Uticaria? Allergic Reaction?

Her: "Well, that's just dry skin"

Me: No, it started the day after I started the Synthroid and has gotten progessively worse"

Her: "Well, it could be an allergic reaction, but that is very rare"

Me: "So I guess that means it can't be true!"

I scheduled an appointment with the doctor who took one look at my vitals and said "I don't like you on this medicine, we have to get you off, Now!"

I will not go back to said nurse pract. again., but I love the Dr.

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brendygirl    7

First he told me I had lactose Intolerance, which he had, too. Funny, going off dairy made me L.Intol. Since then, I've gotten back on it.

Then he said my back pain was from slouching and to do more situps (I was aerobics queen as it was)...plus then I'd look at my fat, slouching husband and wonder how his back didn't hurt...????

I begged for the bloodtest and the Dr. INSISTED that I go gluten free to see a dietary response and then if I felt better he'd do the blood test.

When my IgA or whatever levels were "elevated but not enough to diagnose". I said, "What do I do?" He said, keep on a gluten free diet!

btw

Every time I went in he'd say "I think I have that, too". I think they teach them to say that to show compassion. But I can tell it's BS. When he sent in my bloodwork he sent his own in to test his levels, supposedly. what a dork.

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Eriella    0

My doctors have some gems:

- We found what is causing you the pain! It's an ovarian cyst! (But my pain is 8 inches above my ovary!)

- It's just stress induced constipation. Take stool softeners every day and you'll be fine. Some people just get constipated (I hadn't had a bowel movement in 2 1/2 weeks and the xray showed poop throughout my intestines)

- Just keep taking the stool softeners (when I told them that eating pasta and bread made me sick and how miserable I was traveling in Paris and Italy-- how much obvious can it be!! The big problems always started during the last weeks of school where I was eating pizza and drinking beer and I was joking about how I had C going into D after my pasta binge! AND I HAVE A FAMILY HISTORY (In my defense, I didn't know what Celiac meant)!!)

- You have no antibodies, so it isn't gluten (1. no one in my family has antibodies. 2. He told me 4 months before the test they told me that "if it makes you sick, don't eat it", so I had not had anything with obvious wheat in it. 3. I had a wonderful dietary response in the week between when my blood was drawn and when I got it back)

Grrr-- Doctors are not my favorite people. I understand why the med school machine causes this, but I hate how clueless some are.

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Jodele    0

When my oldest DD was 2yrs. we took here in to the gi dr. and ran some tests. because of stomic pain. I thought her reflux was flaring up again. She was born with a alsuer also. My mom went and took her to her follow up appt. and the gi clinic scured up her referal and did not let her be seen with the doc. I was 7 mths pregnent with my middle DD and dicided not to have a fight to get her in again. Takes at lest 3 mths to be seen at this ped gi. I Thought they would have called if anything was wrong with any of the testing. Fast forward five years and Emily was getting worse again. Got a pointment with the same gi doc. She came in and ask if Emily had ever been seen by her and I said yes when she was 2. "did I do testing on her?" Yes I said. She went out and was back with in 10 mins and said that she tested positive for celiacs and we need to retest her. I was so ticked off I could have spit nails. Thats when I gave up on DR.s and dont trust them at all. Well Emily's test came back even more positive then before and we set up a biopies, biopy day and I asked the dr to get at least 10 biopies of the small intestince and she look at me like I was crazy and she said one will do just fine. ha ha ha. biopy came back neg. wonder why. Then the doc said that Emily can eat gluten because she did not have the damige to her villa. I told her she had no qlue of what she was doing and a positive blood work means that you have problems with gluten and I am going to put her on a gluten free diet. The doc was so shocked and said I could do it but she dought that it would help her much. It has been almost a year and Emily has not have the poblems she had and now is in her weight group for the first time in her life. Yea it did not help her out. lol. Now my sisters kids are going to see her now and I told her just get the blood work done and be done with that doc. There are only 3 ped gi docs in okc and they are all in the same office. sucks.

Jodele

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melmak5    2

When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.

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ravenwoodglass    1,214
When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.

I would formally and in writing fire this doctor. I would be very specific about your treatment by her and I would also send copies of the letter to the head of whatever medical group or hospital she is affilated with. Make sure you get full copies of ALL your records from her ASAP (you have a legal right to them and don't let them try to tell you that you don't, you may have to pay a copy charge, and let your new doctor know what happened.

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debmidge    7
When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.

Boy she sounds like a "gem."

One GI told my husband he has an obsession with food and needs psychological help....(this was prior to celiac diagnosis, and we're still struggling with IBS issues and noticing that certain foods bothered him - foods like fruits/vegetables/spices -not gluten but it certainly foreshadowed an intolerance that the GI should have picked up on).

And here's a good one:

Your GP gets angry because your ob/gyn specialists notices that you have a lump in your thyroid and gives you a "script" to get a blood test so that it's done before you go to your GP (to save time, etc.). The GP comes down with "professional envy" and then decides not to allow you to get a nuclear scan of the thyroid just now ( to see if the growth is a hot or cold nodule (cancer). At this point, you fire the GP.

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When the doctor tells you that you have Celiac Disease then his next sentence is....It's ok though to still eat whatever you want. If you get sick it doesn't matter just don't eat for a little bit and you'll be o.k. What sad, is b/c he was my doctor and I had never hear the word gluten before that visit, I continuted eating "whatever" for the next 5 years.

Think I need a new doctor!?!...... :-)

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KAG    0

My doctor today said "I don't think that I can help you."

I said "Then there is no reason to be here."

And I walked out.

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mtraezme    0

Luckily I don't need a new doctor because my GP and GI both told me that I was "fine" after not listening to a word that I said. I was so "fine" that they refused to run any tests or even do a thorough exam. I guess that means I'm okay, right? Well, aside from the pain, bloating, gas, loss of coordination, etc.

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mama2    0
Or when the doctor directs you to the internet for information.

That really was good advise, as this is where I met all of you wonderful people.

Cathy

I was also sent to the internet for information... had no idea what to eat those first few days. Got a great start here at celiac .com :)

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ab123    0

When a top children's hospital in Texas misdiagnoses you for 3 years with Lupus and insist that the meds. help you when they dont. So then your frustrated mom spends countless hours looking up your symptoms just so the doctor can tell her that I dont have enough of the "commom" symptoms for Celiac. I guess telling them "eating one Goldfish cracker makes me have D." wasnt enough evidence to show that I cant have gluten!!

It took my primary care doctor to diagnose me, when he thought he was doing the right thing sending me to the specialist.

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cyberprof    62

Doctor #1- An internist. I'm 45 and the doc is a woman a bit older. I go in complaining of bloating and "bathroom" problems, with several symptoms of ovarian cancer and wondering why I feel so bad. She poo-poos me but pokes me and does a blood test for ovarian cancer, which is negative. Tells me I'm just overweight (I am, by about 25 pounds) and to go away. Of course, if she had really cared, she might have asked me my other symptoms and diagnosed celiac. A year later I got really sick and had stomach pain, so she did refer me for an endoscopy for an ulcer. That was the only good thing she did.

Doctor #2 - A GI specialist set up to do my biopsy. He was great because he didn't see any evidence of celiac (and wasn't told to look) but he took small intestine samples. No blunting villi BUT there was cellular evidence of an immune response, so he said to eliminate wheat & gluten. Sent me to a dietician. On the followup where I told him how much better I felt and how quickly, he diagnosed celiac. HOWEVER, he told me that since I had a "mild" case, I didn't have to be as careful with CC and could occasionally cheat. So, in the end, a dud.

Doctor #3 - Another internist, a woman in her 30s. I wanted a better doctor, so I went to her on a recommendation from a family member. I told her I felt better after the celiac diagnosis/gluten elimination but still crummy and, based on symptoms and research, I wanted to be tested for autoimmune thyroid problems. She refused, saying that I had no symptoms and all I needed was my TSH tested and I argued with her. She snarkily commented that "not everything you read on the internet is correct" and I argued back that what I read is PubMed, and I also am an intelligent person and expect to be treated correctly and with dignity. I fired her and am seeing a naturopath next week.

Doctor #4 - My long-time OB/GYN who also had the opportunity to diagnose me based on sypmtoms 2-5 years ago. Yesterday when I saw her, she was interested in the celiac and asked what my sypmtoms had been. I told her and stated that that was why I was worried about ovarian cancer and there is some overlap in the symptoms. She sarcastically said, "EVERYONE is worried about ovarian cancer!" HELLO of course we are when CNN or some other media says "IF you have bloating, gas etc. etc. ask your doctor to ckeck for ovarian cancer". And some women do have it. Why she was so defensive I don't know, except maybe because I pointed out that there were symptoms of celiac over 4 years ago. I didn't blame her explicitly but... there you go.

Doctor #5 - My son's Pediatric GI. Talking about my diagnosis, he tells me that without total villious blunting, many doctors would have said that I don't have celiac. Yeah, and since I went off gluten in February, who's to say that by now or next year I wouldn't have been even more sick and by then I would have shown totally "gone" villi due to more gluten damage? Do they really expect someone to have to get so sick before they diagnose? The one good thing that he told me is that even though the insurance company won't pay for my son's gene test until all other test options (i.e. EGD) have been exhausted that I should get MY gene test done and paid for by insurance to see if I "really" have celiac. So I will, but even if I don't have the gene, I would never go back on gluten. But it's a good idea and will help me help my son, even if the doctors won't.

You know the most frustrating thing is that without all you guys, I would feel so alone. The docs make me feel abandoned and unsupported, which is not a good thing - I'm sure you'll all agree - when you're faced with serious illness. I'm happy that I don't have cancer or diabetes but those diseases at least get you some concern from doctors.

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Guest thatchickali   
Guest thatchickali

I read all these and have heard 90% of them from my doctors that I have seen.

When I finally got my diagnosis I saw a dietitian who said she had heard of celiac disease and gave me the Whole Foods list of Gluten Free Products from SPRING 2001! It was only one page long at that point!

Um, I had already picked up the zillion page list updated May 2007!

I called my advisor and changed my major to Nutrition Sciences and I want to become a RD with a specialty in Celiac Disease and other food intolerances.

Haven't found a good doctor yet, even my allergist who diagnosed me and has Celiac himself just said "It's a meat and potatoes diet, eat meat and potatoes."

When I got my enterolab results he diagnosed me over the phone through his nurse, and told me that they didn't do follow ups for celiac disease. I was thinking, you have it yourself, you should know how hard this is for me.

UGH.

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Centa    0

My first post after registering is a rant about my frustration with my doc over in the false negatives thread, so I won't repeat it here.

My golly, these docs we're writing about all use the same lines! "I don't believe in..." "Here, take a pill, to sleep better..." My max out was that despite 1) reporting a ton of symptoms for 2 years and 2) then reporting massive improvement when I quit eating wheat, my doc kept doing a lupus test on me, because I do my own yard work & am in the sun, so have an age spot on the bridge of my nose. I'd say, I can't sleep, I'm ravenous, I can't think, I hurt and he would look at that 1/3" age spot on the bridge of my nose and order yet one more lupus test, which never came back positive, ever.

So: he refused to hear me, and chose to focus on a spot. :) I got one of those microdermabrasion kits at Walmart and microdermed the spot off. B)

Off topic, but the wackiest thing I've ever been told by a board certified physician is that a lump under my arm was an air bubble.

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How about the ever famous answer of "It's a female thing". Followed in a close second to "It's all in yuor head. Here's a prescription for Prozac." Yeah I'm sure that Prozac is just gonna make me happy that I have lower right abdominal pain, weight loss, diarrhea, gas, bloating, more weight loss, and chronic anemia.

We should start a list of favorite quotes from relatives and doctors!

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LoriC    0

All i can say is WOW!!! i'm reading these posts and relating so much, i went in to my family dr. last summer with a rash (2006) i was told i picked something up from camping, went back in 3 weeks later as the rash didn't go away, i was told my husband must be giving me something from his work, got more predisone, was back in 3 weeks with the rash still...i was told then, it's something from camping again, got a cream that didn't really work. I went to see my ob/gyn, told twice by her she didn't no what it was, but treated me for a yeast infection..then i put up with the rash for another few months. I go back into my family dr. this July, still with rash, aching legs, feet, head fog real bad, dizzy, nauseated, was told i have vertigo and put on an antibiotic which didn't do a darn thing but make my D worse. I go back in 2 weeks later still with all the symptoms, was told, its a virus. SOOOOO i take it upon myself to see a dermatologist, was put on dapsone for 3 weeks, return visit was told its DH. was put on a gluten-free diet and more dapsone and my rash is almost gone and i feel soo much better.

OHHH and when i told my family dr. it was DH, he said hmmmmm i'm curious to see if thats what you really have, he said he doubted it, as i would be sicker than i was! I said ummmm i've been really sick for a long time, he said no you would be sicker than that..oh my, how much sicker can you get is what i thought. but this thread made me giggle, going to see a gastro dr. on Oct.15th, can't wait for that one :P

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Jestgar    715

I just had lunch with a group that included a pediatrician who told me that his step-mom has Celiac, then proceeded to tell me about all the great spelt bread I could get...

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This is the scariest thread I've ever read

My baby had rectal prolapse. Our family doctor wanted to just arrange a surgery, without even trying to find out why he was having that problem! I had looked online, and found that Toby had all the symptoms of cystic fibrosis. I insisted on an appt. with a ped. gastro. at our local children's hospital.

Toby was tested for cystic fibrosis, twice. He doesn't have it. The ped. gastro. consulted with the pulmonologist, and between them they decided it was asthma + celiac disease.

During that same time period, my 8 year old was suffering from horrible constipation and acid reflux. We took him to the family doctor, who wasn't in that day so we saw his partner. Thankfully the other doctor has celiac disease himself, and actually knows what he's doing! He sent us to the lab for testing, it showed a slight positive. We had all 4 boys tested, and they had nearly identical results!

We went gluten-free, Toby never had another rectal prolapse, Nate's constipation and reflux were cured (and he started growing again), Jonas's autistic behaviors and learning disabilities disappeared, he now 'only' has ADHD, and Henry's lifelong potbelly is gone.

I had friends on a parenting message board who told me to insist on seeing experts, and not quitting until I had real answers with lab results to back it up. They said parents have to fight for proper care. I'm glad I got that good advice.

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