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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.

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Hi everyone.  This is my first time posting although I've been reading some of your posts for a week or so now.  I have a few questions that I hope you can all help me with. 

 

A little catch up on where I've been and where I am currently.  I was diagnosed with hypo thyroid 10 years ago and have been on Synthroid since then. At that point I was getting horrible back pain, tired all the time, and just plain didn't feel well.  Since then some symptoms have stabilized and some have just gotten worse.  For the last 10 years and probably well before then, new issues just keep popping up.  Just a list of symptoms I have had on going and unexplained are chronic diarrhea, stomach pain, constipation, bloating, gas that just seems to not go away, pain in my lower back, random hot flashes, anxiety, dizziness, fatigue, crying for no reason, and other minor symptoms.  I have had days where I would have to run to the bathroom 5 or 6 times a day.  After I would feel so exhausted and hungry to the point that I just can't seem to get full.  This would be followed by about a week of constipation, bloating, gas etc.  I have had stomach, liver and gallbladder ultra sounds come back normal. I have taken multiple thyroid tests that came back normal.  About 2 years ago I started having short periods that would last about 2 days and then I would get multiple in a month.  Usually about every 2 weeks.  I've had ultrasounds for that come back normal.  I've been told its hormones, depression, all in my head.  At one point I was in my Drs office in tears because nothing was making sense.  I've also been diagnosed with high levels of fatty enzymes in my liver.  I am only 30 years old, I exercise, eat very healthy.  I rarely have sugars and eat mostly whole foods.  So you can see where all my frustration is.  Recently my sister suggested something called the FODS food list for IBS, I did that for about a week and noticed that my symptoms flared up when I ate bread.  So I cut it out for about a week and I started feeling better. 

 

Anyway, I had my blood tests for celiac this morning and have an appointment with the GI next week.  I know I am supposed to continue eating gluten until testing is completed.  I was only off for about 5 days and since then have been eating it just not every day.  I noticed when I do eat it I have horrible stomach pains, I bloat up with in 30 minutes, I get really tired and heavy and this lasts about 3 or 4 days.  My question is do you think being off of the gluten off and on a couple days here and there would make much of a difference?  And is it normal to get such a horrible reaction to it only a few days being off?  My doctor had said I didn't have to be on it for the blood tests but everything I read says the exact opposite. 

 

I'm really hoping that this could be the answer. I'm at my wits end and at this point just don't want to eat for the fear of getting sick.  Have any of you had similar experiences or have any advise on how to get through all this?  Thanks all!

 

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I am sorry that you are feeling unwell!

Here is a link to the University of Chicago's celiac website. Share the test requirements with your doctor:

http://www.cureceliacdisease.org/medical-professionals/guide/factsheets

Keep eating gluten until all testing is complete! It is hard, but it can be done! You can do it! just take one day at a time.

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    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
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