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Does This Sound Like Celiac?
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7 posts in this topic

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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    • Your body has been used to ingesting and has been coping with the gluten in its systems.  DON'T PANIC because your body is doing it for you.   Seriously now, the medical field has a technological term defining when a system is used to working a certain way/routine.  When that is either disrupted or changed, it could take a while for the body adjust to a different way of doing things.  Another factor in the increase in symptoms could possibly be that your body is starting to "clean house".  It's trying to get rid of the amounts of gluten hiding out in all its nooks and crannies.  It is going to be a long term process.  It's like cleaning out a vacuum hose or other household item that is just caked with gunk.  The first cleaning gets rid of a large portion of the gunk and ick.  The subsequent cleanings gets rid of more and more ick but in lesser amounts. I thought I was going to go crazy those first few months, but things are a lot better now. (I am about 10 months gluten free).  I still have moments of brain fog and even episodes, but my body is getting closer (and more used to)  to having a cleaner "household item".  I know it's tough at first with the increased onslaught of symptoms, but hang in there.   You may want to keep a journal of all that you ingest or come into contact with for a time to track anything that could exacerbate symptoms.  (For me, my episodes are chemically triggered as well.)  If for some reason a few months down the road, you still have large amounts of symptoms it would be a good idea to visit your GP again just in case there something else that is going on.  
    • I would love some help! After 20ish years of being misdiagnosed with IBS, I was diagnosed with celiac disease (positive blood test for tTG IgA and positive duodenal biopsy) ~ 6 weeks ago. Of course I've gone completely gluten free, and I've been crazy paranoid careful not to ingest any gluten. I've also completely avoided all oats (even certified gluten free) and cut out lactose (due to transient lactose intolerance... because I don't have villi) . But now I feel WAY WORSE. I've had abdominal pain every single day, which ranges from mild aching to severe 10/10 laying on the floor crying and vomiting pain. I understand that it takes a long time to get better, but why would I get so much worse? My best guess is SIBO, but I can't imagine that it could cause such extreme symptoms, can it?  So my question to you fine folks is: did this happen to anyone else? Have you gotten sicker after you changed your diet? Is this normal?  For arguments sake, lets assume that I did not ingest any gluten to cause these symptoms... Thank you for your help!
    • Thanks very much Cyclinglady. Yes, it is Kaiser. I doctor said the GI think it is unlikely to be celiac deisease (he did not say how he came to this conclusion), but he would be happy to do an upper endoscopy for me. I did some look up online, this procedure should be low risk. Still feel a little hesitate while reading the potential risks :(.
    • I would suggest you test your daughter through a doctor. The Enterolab tests are not recognized as accurate or reliable by the medical profession. See this link from the Chicago Celiac Disease Center: http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Sorry.  Something is wonky with either my connection or celiac.com! Your results are not specific...borderline.    That is why your PCP should refer you to a GI for further celiac blood tests and a possible endoscopy.  I recognize the lab report form.  Kaiser?  If so, a PCP can not order a full celiac panel.  Only a GI can do so.  Why bother?  Because if you test like me, the TTG tests are always negative.  Request the EMA and the DGPS test via a GI.   Do not be fooled by a lack of abdominal symptoms.  I was only anemic -- no abdominal issues at all.  Constipation is a symptom.  Your PCP is thinking is just historical Classic celiac disease symptoms.   Please email your doctor for the referral if you think you might have celiac disease and want a solid answer.    
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