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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 Celiac.com's FREE weekly eNewsletter   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

Top Five Reasons To Get A New Doctor
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For my complaints of dumping immediately after taking a bite of food, my primary care doctor did two things, gave me zelnorm, which is for constipation and told me that I was depressed, it was my nerves, and that I had IBS. He managed to get me to take paxil with no results, then zoloft which made it so much worse that I could not even eat one bite of food in the am and travel by car to work without having an accident. I had to wait all day long until I got home to eat, to where I could be near a toilet.

He kept trying different antidepressants, all with no results. I refused them after awhile and still he kept trying. Even though he never said it, looking back, I realize now that he thought I was some kind of a nut case. Our twenty year relationship ended when his office sent me a certified letter stating that it was no longer beneficial for him to be my doctor.

The only good thing that he did for me was to send me to a GI doctor who prescribed Cholestyramine which helped enough with the D that I could have enough time after eating to get to the bathroom, in most cases.

By that time I was so worn down and mentally confused due to fatigue and other symptoms that I didn't have the wherewithal to even keep track of doctor's appointments. The GI doctor insisted that I needed a test, which I have no clue to this day what the test was, and I kept dragging myself out of bed and going on the wrong day. I would go a few days in advance or a few days after the scheduled appt. I never got that test.

I then went through a sleeping spell that lasted for over 6 weeks, only rising to use the restroom and eating very little as everything made me sick.

Went to another doctor who told me I had EBV and low thyroid.

By this time, my extended family had drawn the conclusion that I was just lazy and were very unhappy with me because I could not drag myself out of bed to go visit them or do things with them. My brother washed his hands of me at that time.........and still won't speak to me because he wanted to have a big dinner for my birthday and I told him that I was too sick to come.

My new doctor listened to my entire laundry list of complaints, including the fact that my memory has deteriorated so badly that while on the way to his office I could not even remember where I was going at all for a few moments, and to his credit did not try to put me on antidepressants but started running blood tests. They came back as extremely low folate and low thyroid.

I have discussed the likelihood that I have Celiac disease with him but so far as I am aware, he has yet to order any blood tests for that nor has he referred me to a specialist in that field. He did however refer me to an allergist. The results where that out of 64 things tested for including, trees, grasses, molds and foods that I am allergic to all but 7. Beef, pork, chicken, fish, egg whites, garlic and saline are my safe foods.

When the test results came back on all of that he exclaimed with happiness, "See, it's not all in your head after all, you have a real problem". I had never indicated that it was all in my head. I had told the man that I have had chronic D for 12 years now and was suffering from extreme fatigue to where I could sleep around the clock and that my stomach was constantly bloated and felt as if it were on fire with infection at times, which I believed was altering my ability to absorb proper nutrients to the point that I was losing cognitive ability.

On my own I have gone gluten free, but it is particularly difficult when you are allergic to all grasses including rice. I have lived on cabbage soup, roast beef, scrambled eggs, green beans, pineapple and chicken for the last several months. The D is gone for the first time in 12 years.

This guy seems to want to help, but really knows so little, but is not really wanting to refer me to a specialist, as he seems to want to try to figure it out himself. If he will refer me to someone who can help I will keep him for my primary physician but if he won't, I am going to have to go doctor shopping yet again.

My old GP and GI were the best but as I mentioned I moved. Don't hesitate to go to aGI. The Celiac Support Groups in each state can recommend doctors as can the Celiac Sprue group online (I found that out thanks to the help of a wonderful ember of this forum).

Loey smile.gif

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When the office tells you to take "Vitron C for Iron, Vitamin D 20,000 & Vitamin D One-A-Day." After confirming that I will be taking 20,000 for Vit D and will be on three different supplements and am told yes I proceed to going to three specialty vitamin stores and become very confused when I can't find anything above 5,000 IUs and One-A-Day doesn't make a Vitamin D concentrated supplement. After calling the office and speaking with a second person they confirm I should only be on two supplements, tell me the Vit D should be 2,000, and I should only be taking Iron three times a week - WOW that could have turned out bad, you would think they were trying to kill me!

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With as incompetent as most Doctors are. I think they are trying to kill us all. Gotta hand it to them, they are doing a bang up job! :huh:

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This was a great thread. I have to say that at first my dr gave me info from the internet and told me that once I was well I may be able to eat gluten again. I've stayed with her though (we're in sort of a small town anyway) as she not only read everything I gave her she studied the disease on her own. She spends as long as necessary with me and will do any test I ask for. I wish we had access to a specialist but at least I have someone who is willing to listen & learn.

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This was a great thread. I have to say that at first my dr gave me info from the internet and told me that once I was well I may be able to eat gluten again. I've stayed with her though (we're in sort of a small town anyway) as she not only read everything I gave her she studied the disease on her own. She spends as long as necessary with me and will do any test I ask for. I wish we had access to a specialist but at least I have someone who is willing to listen & learn.

You're so lucky that she listens and is wiling to learn. The jury is still out on my GI.

Wishing you a happy and healthy gluten-free Thanksgiving. Just put my Ducks in so we'll be eating late.

Loey

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Go to the doc feeling completely exhausted and achey. Was told, you have three kids, you want some antidepressants? Take some iron your ferritin is 2.

Go to second doc, tell him about ferritin of 2 and he says you have celiac and does the tests. Go back to doc number one, tell him I am celiac and he says, thats a simple test, why didn't you ask me to run it?

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(after years of debilitating symptoms that magically went away after going gluten-free)

Me: I went gluten free and all those symptoms I've had for five years went away, including the daily bouts of excruciating facial pain.

Doc (after a year of near indifference): Facial pain? Let me check your sinuses....... They look fine. Here is a prescription for antibiotics. Come back in three weeks for a physical because you're overdue for one.

***Three weeks later***

Doc: If you still want that celiac test, you can get it today, but your insurance probably won't pay for it (Doc leaves).

Me (to nurse): I've been gluten free for over two months. Would I even pop positive if I had it?

Nurse: That's a good question. Let me check with the lab guy. (Leaves. A flurry of typing is heard from around the corner.)

Nurse: We think so. It's an antibody, and antibodies last for years. Think of smallpox vaccines... Besides, you may think you are gluten free, but gluten free means a lot more than not eating bread. You'd also have to avoid rye, barley, beer, and just about every prepackaged food.

***Three weeks later***

Me (calling on phone): Hi, you said my test results would be in a week ago....

Receptionist: Sorry, let me see if the doc left any notes for you. Hrmm, there is nothing to worry about, your physical looks great, you are perfectly healthy, except that your vitamin D is alarmingly low. Doc recommends you buy the sublingual drops that we sell here...

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My first biopsy result - "You just have some ulcers in your small intestines, take more Protonix and Prilosec". My 2nd biopsy result, after 8 months of unresolved issues, a stomach emptying study, etc all negative - "You just have A LOT of ulcers in your small intestines. Have you been taking your Prilosec?" (they had doubled my dose between biopsy result 1 and 2. Thank god for the GI nurse practitioner that suggested I try gluten-free even though the blood test was negative. I went back to gluten at the doctor's recommendation and got sick again almost immediately, and haven't been back to it since. They still deny that I have Celiac in spite of inconclusive biopsy (due to what they called ulcers but was who knows what in reality) because my blood test was negative. <_<

Seeing a new doctor soon, hopefully they're a bit more understanding or I'll be shopping around for a new doc. Insurance changes suck, I had the best doctor ever that actually would discuss things with you and had an ounce of respect for his patients. Most of them look down on you even more if you're in the medical profession and can understand what lab levels or anything means, heaven forbid (I'm a nurse).

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LOL this is great...once I went to the hospital because the antibiotic they gave me made me ill and the nurse that I told I had Celiac handed me a cracker and said this will help....LOLOLOLOL

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    • His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded.  Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months.  Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.
    • You finally know what has been slowly and painfully killing you. Recovery will not be quick but it will come. You will find yourself running up the stairs in 6 months and will sit sobbing at the top for half an hour. It will be about 5 years and lots of PT before you will walk normally again but not long ago you remodeled the bathroom because you were told you would be in a wheelchair soon. The nightly agonizing hours in the bathroom will be replaced with a solid eight hours sleep now except when you accidentally get glutened. Those glutening will come farther and farther apart though as you get better at the lifestyle.  It seems like there is nothing you can eat right now but that will change as more folks are diagnosed and more foods become better labeled.  Your skin will heal and your hair will grow back. That early gray isn't going away but eventually you will prefer it to having to dye it every three weeks or so because it now grows faster than it has at any time in your life. You will have lots of times that you feel sorry for yourself but a quick trip to look at that tackle box full of meds you no longer need will be a comfort. You will have some residual damage even years later but nothing you can't handle. You will be able to work again and to go back and finish those degrees but you will go back to school too soon. Don't be too hard on yourself as a couple years after that you will have recovered enough to take and pass those classes. Your life isn't over with this diagnosis it is just going to be different. But it will be a better different without the pain and moodiness. Eventually your family will understand and stop the eyerolls because they will see you healing. It will be hard socially but your social life was always tough anyway.  The important thing is you will get your health back and that is more important than grabbing a quick meal at a take out joint. Hang in there.
    • I can understand doctors being cautious and wanting certainty before diagnosing a youngster with a lifelong condition that will limit their already limited dietary choices. Even so, his figures seem to make a very strong case and I wonder what their rationale is for waiting 3 months? That seems to be time that could be better spent getting him healthier on a gluten-free diet. I wonder if you can ask them what clinical advantages the delay will bring? Either it could speed the process along, or at least you'd get a better understanding of why they advocate a delay? 
    • He had the dpg igg as well. That came back at 50, normal is under 20.   It's the waiting that is hard and the reluctance of Drs to diagnose. His diabetes educator has already said they won't pay attention to those results for 3 months and then they'll test again. If they're still high they will look at the next steps. Gp seems a bit more ready to proceed now so hopefully he will get the referral sorted so we can have a definite answer before too long. 
    • You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc.  You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights.      
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