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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?  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
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greenbeanie

Struggling With Anger At Doctors

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I have an appointment in a few days with a new doctor who seems willing to finally test me for celiac, after 37 years of increasing symptoms. I'm glad to have finally found someone who seems willing to take my concerns seriously, but I've had such bad experiences in that past that I don't know what I'll do if she turns out to be another doctor who won't listen. I've prepared everything I can think of to bring to the appointment - a chronological list of the many symptoms that have worsened over the years, factsheets from multiple prominent celiac research centers, scholarly article abstracts, etc. Any suggestions for what else I can say or do to get her to listen? 

 

My symptoms are way too many to list briefly, but here are the most bothersome ones:

  • Horrible, itchy rashes since age 6, often over large areas of my body.They ooze yellow/clear fluid and bleed when I scratch. I was told it was eczema, then stress, then contact dermatitis. But no creams, relaxation techniques, or perfume-and-dye free detergents/soaps/shampoos have helped.
  • Diarrhea 4-6 times per day since early teens, along with nausea after meals and extreme fatigue. Doctor did one stool test for parasites (negative) and concluded I was fine. When there was no improvement after a year, I went back several more times. Doctor reminded me of "The Boy Who Cried Wolf" and said that if I kept coming back with the same complaint, she wasn't going to be able to believe anything I told her. She said I was lucky to have such a fast metabolism that I could eat whatever I wanted and never gain weight. On the fifth or sixth visit, she essentially threatened me by saying that if I came back complaining of diarrhea again, she'd make me get a colonoscopy that would be "extremely unpleasant" and would involve "shoving something up my butt". She also implied that my parents would be upset at having to pay for the procedure when she knew there was nothing wrong with me. I didn't go to a doctor for years after that.

  • Awful insomnia for the last 20+ years. Sleep study ruled out obvious causes, through my brain waves showed very little deep sleep waves (which they couldn't explain). Medications did not help.

  • Terrible SI joint pain that did not respond to physical therapy, acupuncture, massage, or cortisone shots.

  • Increasingly bizarre neurological symptoms - walking into doorframes, falling down stairs, hand cramps, trouble with buttons and coordination, forgetting names of people I've known for decades. Neurologists found nothing wrong and said it was from stress.

  • Internal shaking for the last five years, extreme nausea much of the time, and soaking several shirts and blankets per night with sweat. Repeated negative tests for diabetes and thyroid problems. Again, I was told it was from stress. When I pointed out that it's just as bad on vacation, or at times of my life when everything is going perfectly well, doctors said that stress can come from good things too, and that even being happy with my job is a form of stress! No matter what I say, I can't win. Previous doctor wouldn't test me for celiac because she said that I would have died in childhood if I'd had untreated celiac (which I know isn't accurate), and the most I insisted that something was really wrong, the more convinced she became that I was irrational.

  • Clear response to a 12-day strict gluten-free trial - exhaustion for the first few days, then felt better than I ever have in my life, then became violently ill upon reintroducing gluten.

This last bit is what got a new doctor to finally agree to meet with me to talk about celiac testing. I feel awful but I've continued eating some gluten every day since then because I really need accurate test results. I simply can't handle larger amounts, but I'm worried that I'm not eating enough for it to show up, and that my doctor will stop pursuing this if tests are negative.

 

Obviously, I'm going to stop eating gluten immediately once the tests are over (regardless of the results), but a diagnosis is crucial because my daughter is having similar symptoms, and her own doctor keeps telling us she's just an anxious child and won't test her either. So there is a lot riding on this appointment, and I'm getting more and more nervous as it gets closer. Any advice would be most appreciated! Sorry this is so long.

 

 

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Hi greeniebeanie

I am so sorry to hear you have had such a terrible time with doctors. No one deserves to be treated like that. Sadly, this is a very familiar story. Many of us have been told we are stressed, making it up etc.

It sounds as if you are doing exactly the right things. There is a list around of the FULL list of tests to request.

The fact you had such a positive response to the gluten-free diet speaks volumes, as does your suffering back on. You may be referred for a biopsy, and will need to carry on on gluten for that too.

Your symptoms sound like a good possibility of celiac or non celiac gluten intolerance.

Stick around, ask questions, rant, we are here

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Some doctors are clueless and quite happy to blame the patient

We had annoying experiences when my now 4 yr old was younger

Me:she has green diarrhea up to 20 times a day it is so toxic it burns her skin off

Doc: stop giving her juice

Me: she has never had juice

Doc: then it's toddler diarrhea

Me: she's lost 20% of her body weight in 1 week

Doc: see your ped about the toddler diarrhea !!!

Gastro: I see she's dairy free? Good dairy can cause issues in a lot of children. You just Ned to be more diligent.

Me: she has an anaphylactic allergy to milk, she has never touched any since she was 9 months old!

Doc: guess its just functional constipation then, and reflux give her Zantac

Me: what dosage ?

Doc: I don't know ask the pharmacists

If you aren't happy with your doc and no one will help with testing, I would just go gluten free unless you need an official diagnosis of medical insurance or school etc.

We ignored our ignorant gastro, and now have a happy healthy 4 yr old

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Sorry to hear you have suffered like this.  I hope that your new doc will show you respect and try to get to the root of your problem.  I want you to get definitive answers that will help you to be delivered from the weight of your burden.

 

Hi Greenbeanie,

 

I like bringing a list of questions to the doctor.  That way, I don't forget anything.  I hope you will get a test of your nutrient levels.  I shook every day of my life until I took Magnesium supplement a few days.  I always thought I was nervous!  I had Undiagnosed celiac for at least 30 years, so I understand the grief of the loss of years.  I hope one day you will appreciate feeling well again. 

 

Doctors can only be human and will make mistakes, even big ones. They are only as good as their training and their use of it.  I think they generally care for people and I hope they will learn to put celiac in their minds as a possibility.  Meanwhile, I am glad for the forum, books,  and the interned.which are helping many people discover their health problems are rooted in celiac.  Even those like me that didn't have a family history!

 

Once you know you have a problem, you can make a great difference in your health.  That is a freeing feeling. 

 

Diana

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You poor thing. I know what you're going through as I went through the same. If your new doctor refuses to test you ask for a referral to a GI doctor. Some are getting better at diagnosing us. If one wants to do a colonoscopy INSIST they also do an endoscopy to look for celiac. Another route to diagnosis might be to look for a dermatologist who is knowledgeable about dermatitis herpeformis so the skin next to your lesions can be biopsied. A diagnosis of DH is a diagnosis of celiac. Do make sure that they are looking for DH though as the lab needs to know that is what is suspected. I had the same itchy oozing rash for most of my life and know how miserable it is.

I wish you good luck.

This is a link to the NIH website for DH. Bring a copy with you to the derm if you go to one.

 

http://www.celiac.nih.gov/Dermatitis.aspx

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Thank you all so much for your kind words. I will definitely bring a list of questions, and a list of tests to request. Surely the new doctor will at least be willing to refer me to a dermatologist, so that might be another route to a diagnosis. (I've never actually seen a dermatologist about the rash since I was a little kid - my last few primary care doctors haven't been willing to refer me for anything. But I have a well-documented history of unexplained rashes for 30+ years, so hopefully the new doctor will at least listen to reason about that!) I will also push hard for a referral to a GI doctor, regardless of what blood tests show.

 

Diana, thanks for the magnesium suggestion! I took some yesterday and again today, and it does help with the shaking! This is amazing! My diet is already high in magnesium (lots of leafy greens, cashews, and buckwheat), so I never would have thought of this as a potential deficiency. It's hard to believe that just two days' worth of vitamins could really make much difference, so perhaps it's just a placebo effect...but anyhow, I'll definitely keep it up for a while and see. I had three years of infertility treatments before conceiving my daughter, and they started me on a high-quality prescription prenatal vitamin at the beginning of that time. I always felt great on it, and many of my long-standing health problems were much better during pregnancy. I wonder if that's why. 

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I have a lot of medical issue also.

I think it's best to go there goal oriented.

Your goal is to get tested for Celiac so just tell her a few of the classic symptoms she can understand.

Don't expect the doctor to understand so much, just the basics.

 

This line you wrote is convincing:

 

"Clear response to a 12-day strict gluten-free trial - exhaustion for the first few days, then felt better than I ever have in my life, then became violently ill upon reintroducing gluten."

 

Then give her a list of the celiac blood tests that you want done as listed in this forum.

Be sure to be eating gluten before the blood test.

 

Then decide if you want an endoscopy based on the blood test results.

 

Once that issue is figured out, if you still like this doctor, then go back to discuss another other medical problem.

Step by step is the way to go.

 

Good luck.

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