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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.

Nervous About Results
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4 posts in this topic

I am new to this forum, so hello everyone. I am 41 years old and I have had stomach (gas/bloating/constipation) most of my life. I just thought it was normal because usually I could tolarate it. However right before turning 40 I had gall bladder removal and ever since my constipation has gotten worse along with other symptoms. Which include extreme fatigue, joint pain, ADD,mild depression, foggy / forgetful mind, NO motivation,my hair never grows (just breaks off a little at a time), canker sores, cold feet/hands (especially feet), tingling / numbness in feet, a pain in the neck near the tonsil area, and I have gained 18 lbs since the surgery.....etc.

Over the course of my life I have brought up some of my symptoms to doctors and always end up with negative results. They usually ended the conversation with start a healthy diet, exercise and wanting to prescribe some form of medicine. I have been given anti-depressants, ADD meds etc. Non seem to help.

Late November 2012 my constipation got so bad that I was having to take about 3 laxitives to feel some form of relief. After confiding in a friend, she advised that I see a endocrinologist, perhaps it might by hypothyroidism. Met with the Doc who was rather a skeptic about my symtoms. He did blood work found, thyroid to be fine but did find vitamin D dificiency, high cholestrol, and elevated platelets in my blood. He prescribed vitamine D pills and suggested I see a GI doc.

Met with GI....I really liked him didnt make me feel like a pyscho that was making up symptoms. He did more blood test, and today I had a endoscopy and colonoscopy. I have to wait 2 weeks for results, by the time I woke up from recovery doc was gone but told my friend that everything looked good. I read the report he gave me, which has pictures and found colon to be normal, except for hemmoroid.....

Endo has the following:

ESOPHAGUS: The Z line was visualized at 36 cm from the entry site and appeared slightly irregular, Ring w associated, mild, mucosal edema and erythema; Bx done.

STOMACH: There was a diminutive sliding hiatus hernia visible in the stomach. Mildly diffuse erythematous mucosa was found in the antrum. Forceps biopsy performed.

DUODENUM: The duodenum appeared to be normal.

I WOULD LOVE SOME FEEDBACK IF ANYONE HAS ANY SUGGESTIONS OR CAN HELP ME UNDERSTAND THE ENDO RESULTS LISTED ABOVE.

The doc prescribed a reflux medicine.....I'm just afrad that they will once again just mask the problem by applying bandaid.

Sorry for the lengthy post but I am desparate. I am tired of feeling like I am making this up. Even as I conclude this email my arms feel like I have just run a race.....extremely fatigued.

Thank you.

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Hi, Dgirl! Everyone on this forum knows you are not making things up, but many have been made to feel that way from their docs....and sometimes family. And after so many years, we can begin to wonder if it's all just in our heads, right? Even though we really know it's not....

I can't help you with the GI report language, but I can tell you this part of our story. Our oldest son was 16 at the time of his endoscopy, his only symptoms (that we realized at the time) were short stature and delayed puberty. Never any digestive issues. The GI doc spoke with me immediately after the procedure and said that VISUALLY, everything looked normal, but they had taken several biopsies. And the biopsies are where they found that he did indeed have celiac. We went gluten-free with him and he grew over 7 inches in less than 2 years!

I hate to say it, but I think it's a relief for many to get a diagnosis of celiac disease. Those two words can explain YEARS of pain, lots of doctor visits, and many misdiagnoses. I hate that this disease is unfamiliar to so many doctors, but it's the root of so many diseases and ailments that are -- and those familiar ailments are the ones that get treated while the real culprit goes undetected.

Hang in there and continue to be your own advocate. I think you could be on the right track!

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Your doctor's report mentions only one biopsy, of the stomach. Under duodenum he only says it looks normal, not that he took any biopsies. I hope that this was not the case since as the pp mentioned the reason they do the biopsies and examine under the microscope is that damage is usually not visible to the naked eye -- unless you have have pretty extreme damage. Again, I hope he took them and just didn't mention them. Normally, a minimum of six biopsies altogether is required to be sure of locating damage and sometimes even then it is missed.

Best wishes on your results and do share them with us if you would care to. Did you get back the results of your celiac blood work?

Welcome to the forum and let us know how we can help you.

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Are you done your testing? I'm assuming they tested ttg IgA and IgG, EMA IgA, total serum IgA, and DGP IgA and IgG; if so then you are in the clear to start on the gluten-free diet. You might want to use this time to start switching out your pantry and finishing off a few gluteny favorites while waiting for results. This way when you get your results, you can start right in on the diet. :)

I know there is a chance that it will be totally negative, but all that means is that you you might be one of the 25% who ends up with a false negative test, or that you are not a celiac... BUT you could have non-celiac gluten intolerance (NCGI) which means that gluten is causing all of the same nasty symptoms that celiac causes, but without the autoimmune damage (we think). Either way, it could be time to consider a gluten-free trial of about 6 months to see if that helps. Give it a few months. I also had "c" and it took a few months of eating gluten-free for it to START improving; at 6 months in, it is still slowly getting better.

I also wanted to know if you knew your thyroid results? Doctors are notorious for just testing the TSH and then not even considering a thyroid problem if a patient has symptoms (as you know, you really do have the symptoms) and the TSH falls in the normal range, or near it. My doctors mismanaged my hypothyroidism for about 15 years because they would only test TSH, and when my TSH did go out of range they did not consider treatment... they would just retest it until it came back to the top of the normal range (a 6 up here).

For a complete thyroid test, the doctor should look at (at least) TSH, Free T4, Free T3, and TPO Ab. Most people feel best when TSH is near a 1, TPO AB is almost nonexistant, and Free T4 and T3 are near the 75% mark of the reference range for that lab. If these tests weren't done, you should have them done... in my humble non-medical opinion. ;)

Best wishes.

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