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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.

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I would just like to tell you about my recent medical history and I would like to know if any confirmed celiac cases could give me some advice.

As of March of 2012 my health went downhill. One morning I felt like I was coming down with the flu, I waited for a few days and I didn't feel better, so I went to the doctor and was diagnosed with pneumonia in my left lung. I took antibiotics and I felt fine for a month, then one day I just felt exhausted. I went back to the doc, got more antibiotics, and I felt better for a few more weeks. Then I got sick a couple of more times with bronchitis and ear infections. After a bunch of tests I was finally diagnosed with chronic or recurrent epstein barr virus. All of my lymph nodes (and spleen) were enlarged, I was exhausted, and I felt an extreme and unnatural amount of anxiety. The doc put me on antibiotics for a while, in case I had been exposed to Lyme disease. Fast forward a few months and I still have fatigue, brain fog, and abnormal blood work. The physical exhaustion has gotten better as has most of the strange anxiety. (I can tell you that the anxiety was something physiological, it was not a normal mental thing). I thought I had encephalitis or something. However, I still can't concentrate on things for very long without feeling worn out. My joints all make loud popping and cracking sound. Its like my bones are made of old creaky wood. This is the most unsettling symptom to me besides the brain fog. Does anyone else have creaky joints? I briefly had eczema on my forearms last spring, which I had never experienced before. I have a splotchy rash that sometimes appears on my chest, neck, and a bit on my face.

After a few months of having mono, and still no change in symptoms I tried a gluten free challenge on a whim. I tried to cut out gluten as best as I could. Some days I did feel better, but other days I felt like crap again. When I did go off gluten, I felt like my stomach was messed up (Which I attributed to all the antibiotics I had taken in the past) Prior to this I really didn't have any GI issues. So I asked my doc about celiac, and he acted like I was another hypochondriac crazy patient. He tested me anyways, but it came back negative.(However I probably hadn't eaten any gluten for a week before the test.) oops.

Prior to all of this, I was pretty healthy, a bit skinny, but I had a huge appetite. Now I feel like an old man. As far as family history, my mother and some others have hypothyroism, my uncle had colon cancer at a young age, and my grandma had rheumatoid arthritis. Autoimmune diseases do run in my family(probably on both sides). No one with known celiac though.

I also saw a rheumatologist based on my bloodwork, and he said it was a possible lupus case. However, I doubt this as I am a white male and I would assume that celiac would probably be 100X more likely than lupus. (I calculated this based on stats.) Also, my ANA was negative, and I don't think my rash is the same as the butterfly rash. Here are some of my blood test results. I was wondering if any of this is in line with celiac disease. I am really hoping its not lupus. Or some sort of infection (I lived and worked outside in new mexico last year, and I thought it could be valley fever at first, although that came back negative.)

I know that the bloodwork doesn't appear promising, but I swear that I wake up sometimes and almost feel 100% normal. And this feeling seems to coincide with a meal that I ate the night before such as stirfry, corn tacos, or baked chicken and mashed potatoes that didn't have any gluten in it. I have to make a new appointment with a new rheumatologist, since I recently moved because I ended up not enrolling in graduate school like I had planned on doing.

Neutropenia - borderline low

WBC - low

RBC - normal

Low complement c3 and c4

Lupus anticoagulant: PTTLA, and hexagonal phase phospholipid - high

anti-dsdna - mildly elevated

ANA - negative

EBV antibodies

Hepatitis - neg

lyme - neg

Sjorgens, anitsmith, RNP, anticardiolipn,antiscleroderma, anticentromere, CRP - all negative

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Welcome!

Do you know which celiac antibody tests were ordered? Did your doctor order nutrient testing? Celiac Disease prevents absorption of nutrients which can lead to all of the symptoms you list.

Have you had any thyroid testing? Many doctors test only the pituitary hormone - thyroid stimulating hormone (TSH). Request Free T3, Free T4 and thyroid antibodies to properly evaluate your thyroid.

I believe you should be evaluated by a GI that specializes in Celiac - do not remove gluten until all Celiac testing - including possible endoscpic biopsy - are complete. Take a written list of your symptom progression along with photos of skin issues to your appointments.

Do establish care with a new Rheumalogist as well. Autoimmune disorders tend to run together so it is important to have as many oppinions as possible when attempting to figure out a complicated puzzle.

Keep a food/symptom log.

Take pictures of skin issues.

Keep looking for answers - doctors can be dismissive when the majority of test for non-specific symptoms come back "normal". It is up to you to push for answers.

Good luck to you :)

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Thanks for the advice, I will ask about the other tests at my next appointment. My thyroid was fine, but they only took blood for the basic test. Also, I am not sure what celiac test was ordered, the doctor just told me it was negative.

"Normal" - thats all I want out of life right now, haha.

Thanks again, your response was very appreciated

Gene

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I agree that your thyroid needs to be tested. Hypothyroidism can cause aching/popping joints and bones, fatigue, mental fogginess, etc.

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