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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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jt72978

Does This Sound Like Celiac?

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I was wondering if anyone could tell me if this sounds like Celiac? I got pregnant in January 2003. At 8 weeks, I began having severe morning sickness. I was put on all sorts of anti nausea medication which did not help. I actually lost 40 lbs while I was pregnant. All of the docs thought it was in my head...that nothing was wrong with me. I began experiencing sever joint pain in my hips, legs and back. Still docs thought it was all in my head. Delivered my daughter a month early. Since then, I have been feeling "sick", for a lack of a better term. My joints ache severely and i am more exhausted now, than I have ever been - I am only 26 years old. I have constant diarhea every time I eat something. I have gained all of those 40 lbs back and continue to gain...even though all of my recent bloodwork has shown that clearly I am not absorbing nutrients in a normal fashion. My iron has been extremely low since my pregnancy - trying to bring it up seems pointless, as it won't budge with OTC iron supplements. My doc sent me to a rheumatologist who had bloodwork done and came back with results showing a high Rheumatoid Arthritis factor. It's been since May that I have gone to him with no diagnosis. 3 of my family members have been recently diagnosed with Celiac and so I asked my doc to send me for bloodwork - did that yesterday; waiting for the results. What should I be looking for with my results?? In addition, my daughter, now one year old, has had a lot of problems with her gastro intestinal system. She suffers from, protein intollerance (according to her pediatrician), and is on a special hypoallergenic formula. They tried to take her off of formula last week and she was miserable and had such bad diarhea, it gave her a blistery diaper rash....doc said put her back on formula indefinitely....now I am wondering if she possibly has Celiac. I made an appt for her to go see a pediatric gastro specialist in hopes of getting more answers, as her pediatrician seems to be very stingy with information as to why this is happening, and what to expect in the future. I am getting frustrated trying to get a diagnosis - it feels like it is taking forever...the docs say everything is trial and error....

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I think the blood test results should be able to tell you a lot. I had my blood tests done two weeks ago. My doctor called with the results one week later. He said I had a positive to the test for gliadin antibodies. So, now I go to see a gastroentologist for a biopsy as the next step.

Since it's in your family, it seems like that might be what you have as it can be genetic.

Hopefully you'll only have to wait a few days for results and then you'll know.

What concerns me, though, is that your doctor never thought to do a blood test for celiac on his own. You had to tell him to do it. I'd get a new doctor. I had never heard of Celiac until a week ago. I went to my doctor two weeks ago to tell him that I've had digestive problems (diahrea, cramping, etc) off and on for a year and he immediately ordered the blood tests.

Also, my problems started a few months after I had my baby. I've read online that pregnancy can trigger this.

Interesting enough, I had hyperemesis gravidarum during pregnancy as you did (severe morning sickness). My anti-nausea medication helped a little bit, but I still threw up about 20 times a day for five months, then once a day until the end when I gave birth two weeks early. I wonder if the two are connected??

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So far these are the results I have received - the other celiac stuff is still pending:

Low Iron - anemia

Low Vit B12

Normal values for Gliadin Ab IGA and IGG

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My G.I. tested my blood for Gliadin AB IGG and Gliadin AB IGA, but he also tested for ENDOMYSIAL AB and RETICULIN IGA.

He said different labs test for different things but that it's important to use a lab that tests for all these things.

Also, this may be very obvious, but I made this mistake a year ago: Last year my brother was diagnosed with Celiac, so I decided to just go on a gluten-free diet to be on the safe side a couple months before I got my own Celiac blood test done. I thought there would be no harm in this and I didn't mention it to my family doctor at the time. Well, I ended up with a negative test and was told I didn't have Celiac. Overjoyed, I ate wheat the following year. When I saw a G.I specialist this July for some other issues, he suggested we do the Celiac Blood test. And sure enough -- I tested positive.

I took these things from my experience ...

-Entrust your tests to a G.I. who understands Celiac, not your regular old family physician.

-Don't self-diagnose.

-You must be eating gluten for the Celiac tests to be accurate.

Hope any of this is helpful and good luck!

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I also was very sick with my last pregnacy, which was 4 years ago, it also started about 6-8 weeks into the pregnacy, I got terrible migraine headaches, diareha, vomitted all the time, I had to be fed threw a nasogastric tube, and had to be in the hospital until my 7 month, then I felt a little better, oh yea I also started having siezures which I never had before, and had sores on me, and got gestational diabetes really bad. I was a postergirl for celiac disease, but never got dx with it, I was pregnant with twins, they kept blaming it on my increase in hormaones. After I gave birth I started felling better for a while, then in 2003 started really getting sick lost 72 pounds in 3 months. Sores all over I was a mess, finally went to the E.R. and they called in a gastro specialist which in a matter of minutes looked at me and said I know what it is, Celiac. He did a endoscopy and biopsied the sm. intestine. And sure enough it came back positive. He said he knew just by looking in the scope at the appearence of the intestine it was celiac.

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jt72978, first of all I'm sorry to hear that you're dealing with this. Iron and B12 are both difficult for those with celiac disease to absorb. Also, pregnancy is one of the things that can trigger the celiac disease (as well as stress or surgery). Because it runs in your family it's good that you got tested, because it could be celiac disease. If you're still taking OTC Iron Supplements and end up testing positive for celiac disease stop taking them until you contact the manufacturer and make sure they're gluten free. Before I was diagnosed I was getting IV's of iron 3 times a week because the OTC one's weren't helping (they weren't working because they weren't gluten-free). I was also on Pepcid chewables (not gluten-free) because my md thought I had acid reflux (I don't). So once you get the results re-evaluate EVERYTHING you're taking, eating, using (shampoo's, conditioners, body wash). Good Luck though, and please post w/ results once you have them!

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My dr contacted me with my final results today - all indicate that I do not have celiac; but rather another disease that is causing me to be anemic and severely deficient of vitamin b12. Starting tomorrow, I will receive B12 injections daily until my levels come up close to 1000 (they are at 200 now) and then injections once every three months. Further testing will be doen to determine the underlying problem - thanks to everyone responding to my posts.

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