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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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So I had blood work drawn yesterday to see if I have Celiac's. Just waiting for the results. Right now it seems like the only things I can eat without diarrhea is fruits and veggies. I also have this crazy heavy fatigue that I can't seem to shake for the last 2-3 weeks. Everyone once in a while, more frequent than usual, I get these pounding headaches. I also get severe abdominal pain when I eat dairy which doc thinks might be related to Celiac's. I can't wait for the results it's killing me.

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Good luck! I hope you get your results soon - waiting is horribly hard!

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Well the tests came back negative. So gonna try gluten free vegan diet since doc doesn't want me eating dairy and I already don't eat meat. Guess I better get my stuff together so I do this properly!

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Well the tests came back negative. So gonna try gluten free vegan diet since doc doesn't want me eating dairy and I already don't eat meat. Guess I better get my stuff together so I do this properly!

 

 What tests did the doctor do?  I ask because many doctors just run one test, and celiac tests do not have a high sensitivity - some can miss up to 25% of celiacs.

 

This is the full celiac panel (in case you want to check):

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

If you want anymore tests run, do it before you go gluten-free.

 

This report has the stats on the tests on page 12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Good luck with the gluten-free diet!  I hope you feel better soon.  :)

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I know he didn't do all of those. So, I guess I'll just do dairy free like he wants. See if that helps. If not get ALL the Celiac tests later. See what happens.

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So, thought I would be safe just doing dairy free as doc suggested. However, I had spaghetti tonight and within minutes of finishing a small plate all my symptoms returned. This is a royal pain all my fav food are being eliminated. Oh well, guess that beats all this pain and misery when I eat. So, gluten free vegan it is! I don't eat meat by choice, gotta eliminate gluten and dairy, and I'm sure doc would prefer me not eat egg though he didn't say that. Gah! I got lots of work to do.

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If you're already not eating meat, get yourself checked for a B12 deficiency. If you do have a deficiency, it is called pernicious anemia and it can cause pretty severe abdominal pain, bloating, etc. Vegetarians and vegans do have to keep an eye on their levels because animal-sourced foods are the only natural source of B12 that our bodies can digest.

And when you get tested, don't settle for just having your doctor tell you that it isn't a problem. Get your test results in hand so that you can see the numbers for yourself. Just because you might still be in the normal range does not mean that your numbers are ideal.

 

The minimum for the normal B12 range in the U.S. is 200, but even the labs will add text on your test results (if you are low) that anything below 400 can cause symptoms, and the minimum in other countries is much higher than the U.S. For instance, in Japan, anything below 500 is considered too low.

If you take B12 supplements, make sure to look up dosing information and side effects first. All B12 supplements are synthetic, even those used to fortify foods and there are some side effects.

In the meantime, this article about the evolution of milk may be of interest to you. It doesn't talk about lactose intolerance so much as why people of different heritages may be more or less likely to be lactose intolerant. Only a third of the world population can properly digest milk as adults, so if you can't, you are definitely not alone.

http://www.nature.com/news/archaeology-the-milk-revolution-1.13471

And best of luck to you. I really do hope that it is just something like a B12 deficiency (easily treated) and lactose intolerance because going gluten free is much more limiting than dairy free.

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Calling PCP for GI referral to get second opinion. I can't take another episode like this again pain meds or not. It only after dairy and heavy foods like pasta, bread, baked goods, etc. So, wish me luck. PCP better give me the referral. It's the least he can do if he don't know what it is and doesn't wanna keep trying. GAH!!!

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Start a food and symptom journal right away if you can.  Having the "proof" in writing can sometimes be helpful with docs.  Good luck!

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Definitely doing the food-symptom journal. I see gastro doc aug 28 but he's supposed to be excellent. In the meantime there's always the ER again.

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:(  I hope you manage to avoid the ER! Good luck.

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Yeah I really hope I won't need the ER...but if the pain gets bad enough again after the pain meds run out...I'll definitely go if need be.

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