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Struggling With Ibs/cd
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5 posts in this topic

I'm new to the site and am looking for information and support...

My names Val and i was diagnosed with IBS-D at 12 yrs old. I'm currently 21 and have been struggling since with pretty debilitating GI issues. At 12 i lost 25lbs because of what my MD said was IBS-D. I know that he came to this conclusion because of a lack of anything else to call it. However, i was never tested for celiac disease. Recently, it's gotten worse, so my mom told me about Celiac Disease. After a week of a strictly wheat/gluten free diet I've felt great, except for that fact that it left me constipated. I decided to eat some breakfast this morning contained wheat (nutri-grain bar/WHEAT THINS!) and three hours later i was in the bathroom and really sick. I've made an appt with a Gastroenterologist that i saw for liver issues, and I'm hoping to find out if this is really celiac disease and now IBS-D.

Has anyone had similar issues or experiences? It hard for me to trust MDs, after all the things I went through when i was younger. I feel like if they cant come to a concrete conclusion, they settle for what seems most fitting.

Also, i read that celiac disease is an autoimmune disease, is that true? I currently have Hashimoto Thyroiditis which is also autoimmune, and im wondering if there could be a connection.

Thanks to anyone who reads and/or replys.

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Yes Celiac disease is a genetic autoimmune disease. Also thyroid is highly connected(I have graves disease-which is hyperthyroid) Liver problems(which you mentioned) can also be connected with celiac. It is commonly misdiagnosed for things such as IBS as well. There are over 200 symptoms with celiac and you don't have to have the same ones...in fact some people have no symptoms at all. I think that you shoud definitely be tested.

These are the common tests you should ask for

(blood tests)

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

This is a great place for support and answers when you need them

If you need any help just let me know.... :D

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After a week of a strictly wheat/gluten free diet I've felt great, except for that fact that it left me constipated. I decided to eat some breakfast this morning contained wheat (nutri-grain bar/WHEAT THINS!) and three hours later i was in the bathroom and really sick.

That's great that the diet made you feel better. BUT... In order to get accurate results on the celiac blood test or a biopsy of the small intestine, you have to be eating gluten. If you've been gluten free for awhile (like 2 weeks) you may get a false negative.

I think you should get tested especially when you got so sick after having gluten.

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thanks for the info. out of curiosity, what do all those tests test for and mean?! im usually good with medical terminology, but am not at all familiar with these tests.

also, this gastro appt is just to discuss the possibility of celiac disease. i've felt so much better this week that i dont want to go back on reg diet if he doesnt want to/wont test for celiac disease. id rather go back in 3 weeks when i KNOW he agrees with me.

i know celiac disease is genetic, but do you know anything about the rates of celiac disease found in twins? ive heard 70% of identical twins (which i am, have a sister named Karin :D ) both have if one does, but ive also heard percentages closer to 40%. my sister has had symptoms her whole life as well, but not as severe as mine. She seems to be the luckier twin when it comes to health. ive always been a little skinnier and a lot sicker. anyway..thanks again! :)

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Identical twins means you have EXACTLY the same genes. That means that she has the gene for celiac. She may not have had an environmental trigger to set it into action OR she could be asymptomatic. Either way she really should get tested because she has the genes.

-Jessica :rolleyes:

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    • yes, I was tested for it. They said after stomach surgeries and other major things causing that much stress on your body you can become intolerant to gluten. It happened to my aunt as well who was in a horrible car accident. They said you can always carry the gene in your body and having that much stress on your body can start it.
    • A new study confirms a link between intestinal viral infections and celiac disease. View the full article
    • Good luck with all the testing.  You are doing the right thing by telling your son to gluten up!  Buy him one of those gluteny cakes at a bakery...if that doesn't spike his numbers, nothing will. 
    • Thank you for this response! You are right, I'm sure. My sed rate was normal. My c reactive protein was 6, which is high. My platelets were a bit elevated and I was slightly anemic. I am going tomorrow for another endoscopy. I know that these things could be related to other things... but I'm thinking there is a change they are all still related to celiac (I'm hoping). What other autoimmune disease do you have, if you don't mind me asking?
    • HIV doesn't turn off the immune system, it destroys it to the point where most people die from complications that arise from having no immune system.  Some end up with pneumonia or cancer, which takes their life. It is pretty amazing the treatments they have developed for it, to slow it down and give people longer, quality time. I am perfectly content with the gluten free diet as my treatment and honestly, if they developed a pill that they claimed would make it possible for people to eat gluten again, I doubt I would. I could not bring myself to eat a food that I am genetically programmed to not be able to digest and that totally pisses off my immune system.  However, if they succeed with some of the meds they are working on now, one of which I posted about earlier this summer, I would take those.  They are working on things that modulate the immune system down so inflammation can be tamed down further.  Even with a strict gluten-free diet, there will always be more inflammation for us than for those who don't have AI diseases.  I do everything possible to tame it down myself but it isn't in the normal range.....yet. Long term inflammation can kill you so something along those lines would be welcome.  You would still have to eat gluten-free but the disease activity would be calmed down.  This is a drug that targets those with lupus and maybe Sjogren's....which I have.  There are possibilities for other AI diseases from that!
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