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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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    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
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