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Could this be Celiac?

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Posted 7/14/2009 2:28 PM (GMT -8)
Hi Everyone,

I am a regular on the Fibro forum, but now I have a Celiac-related question.

about 4 years ago, I began experiencing awful abdominal pain, constant soft stools, etc. My Dr. did a test for Celiac that came out negative and told me it was probably IBS. Since that time, my IBS symptoms continued to get worse and included more gas and bloating as well as a feeling of being excessively full-like full from my throat all the way down through my abdomen as if I were stuffed to the brim (hope that description makes sense lol)

Anyway...about a month ago a friend of my husband's family (who also has Fibro) told me that she had great relief from her fibro symptoms after going gluten free, so I figured I would try it out. I have now been gluten free for just about 2 weeks and although I haven't had much relief from my fibro symptoms and I do still have soft stools and mild abdominal pain, I pretty much stopped having the gas and bloating as well as that stuffed feeling.

Well today I made pasta for my family (and made some brown rice spaghetti for myself) and ended up caving and eating a piece of garlic toast (not a very large one-it was smaller than the palm of my hand) and about 10 minutes later started experiencing the gas and bloating and stuffed feeling, then about 5 minutes after that, I had to run to the bathroom because I had to GO.

Is it possible that this could all be Celiac? I know that people can have false negatives so maybe my test was wrong? Going gluten free didn't take away all of my IBS symptoms, though, so maybe I have a combination of both?

I would greatly appreciate any thoughts on this that anyone might have..Thanks!!

~Danielle
Posted 7/15/2009 7:37 AM (GMT -8)
Sounds like there *might* be a connection.

I subscribe to the only truly accurate diagnosis method right now is having endoscopy and small bowel biopsy.   The blood test on me comes back negative and I have been diagnosed by biopsy so I know the test was wrong.   I've also seen several others who do have celiac tested with the blood test, get a negative, only to later have bx and have it confirmed they have celiac.

If you want to have a definitive diagnosis, then go back to eating gluten and request endoscopy/sb bx.  But if you've already shown yourself that you likely are reacting to gluten, then just go with the diet for life.  You said you'd gone gluten-free, but still had some symptoms.  You want to make sure you're taking in hidden gluten from multiple sources.

Posted 7/17/2009 6:44 PM (GMT -8)
Hi Danielle,

I am one of the ones that had negative lab tests and endoscopy and decided to be tested through a private lab by a stool panel test. The one true test in my opinion (when you are fed up with procedures and doctor's blaming it on stress or IBS) is trying the gluten free diet, I noticed a difference after just 3 days. Some people can see a gradual improvement over 6+ months so I am not sure what to suggest to you.

You also may want to eliminate dairy for a while until the inflammation heals (if that's the problem). I hope you feel better soon!
Posted 7/18/2009 2:40 PM (GMT -8)
Thank you both very much for your replies!

It's funny you mention dairy, Stacie, because since going gluten free I've noticed that dairy (especially full fat dairy like ice cream) is causing me a LOT of problems. I was going to come on here and ask about that today, actually, because I've never had much of a problem with dairy, but I definitely am now. Lots of indigestion with dairy, too. Is that normal? Could I now have lactose intolerance cropping up, or will I be able to return to dairy once my system has healed from it's gluten issues?

GrizLeeB-you mention looking out for hidden gluten..Do you know what types of things would have hidden gluten in them, or do you know where I might find a list?

Thanks again to you both for your input-I really appreciate it!

~Danielle

Oh, also-I am continuing to notice some slow improvement..except when I eat full fat dairy.
Posted 7/19/2009 9:29 AM (GMT -8)
Hi Danielle, you should be able to return to dairy after some time has passed. You may have to introduce it slowly and limit your intake at first or it could have turned into an intolerance, only time will tell.

Here is a link to safe and forbidden ingredients:

www.celiac.com/categories/Safe-Gluten%252dFree-Food-List-%7B47%7D-Unsafe-Foods-%26amp%3B-Ingredients/

pay close attention to the first, second and fourth link.

I hope this helps, feel free to ask more questions. Take care
Posted 10/5/2010 1:43 AM (GMT -8)
Danielle, you were almost exactly identical to my situation. I too have IBS and going gluten free hasn't completly relieved my IBS, it has definetly helped with the bloating and gas. I have been eating gluten free for 10 months now I know theirs a difference! I've had a couple situations where I've accidently eaten gluten because I didn't know about the hidden ingredience, and within 10 minutes I would have severe abdominal pain! I would encourage you to stay on the gluten free diet. I did not show positive on blood tests, it wasn't until I had a biopsy did I show positive. I know several people that that has happened to. It's really weird. It is possible you could have a gluten intolerence, but could the longer you eat gluten and the older you get it could turn into celiac. At least that's what my doctor has told me. It is possible too that if you give yourself a break from gluten you might be able to reintroduce it back. Hope you see more improvement eating gluten free. Keep us posted.
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