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Some Questions I Have?
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4 posts in this topic

I'm new here and looking for advice on whether or not my symptoms sound like Celiac or a gluten intolerance.

To start with I've had stomach issues my entire life. I've always had cramps, bloating, gas and gas cramps that were intermittent. I never went to the doctors to find the cause of it so I just lived with it. I've always had anxiety and would get terrible stomach aches when ever I was nervous. I've always been skinny and no matter how much I eat I've never been able to gain weight.

Starting in June things seemed to get worse. Five times since June I'll be eating and I'll have to run to the bathroom because I'll get cramps and diarrhea. The last time it happened I was eating Spaghetti. Since June I've had these symptoms which haven't gone away;

- Gas (almost every night, which doesn't always get released)

- Bloating (don't know if it's really considered bloating but gas just seems to move around in my stomach/intestines and doesn't get released)

- Gurgling Stomach/Intestines

- Pain on left side

- Ribbon stools (intermittent)

- Twitching on left side (ribbon stools follow when this happens)

- Diarrhea (intermittent)

- Hair Loss

- Weight Loss (I'm down from 135 lbs to about 118 lbs since June for no reason)

My doctor wanted to test me for Celiac but I told him I had done a gluten free diet for 2 months and it didn't help. At the time I was still eating gluten but wasn't aware of it (theres gluten in more things then I realized). I stopped eating gluten 2 days ago the gas hasn't been as bad. I have a doctors appointment on March 2 so I was wondering if I should ask to be tested? and if I do, will I still have to eat gluten until I'm tested?

One last question, if I get tested and my tests come back positive and I go on a gluten free diet, how long until the gas, gurgling, diarrhea and ribbon stools go away?

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I think you should get tested.I had many of the symptoms you have and was diagnosed Celiac.As far as the gas,bloating,and gurgling go I am six months gluten free it is better but not completely gone.Everyone heals at different rates I am still waiting.Follow your DR. advice and get tested.Good luck.

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If you want accurate testing, you'll need to continue eating gluten until you get the tests done.

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Thanks for the help, I'm definitely going to ask to be tested. So is hair loss, ribbon stools, occasional abdominal twitching and left sided abdominal pain associated with celiac? I was reading a few sites and didn't see those symptoms listed. The main symptoms listed weren't very helpful, they really only listed gas, bloating and diarrhea as common GI symptoms.

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    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   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/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
    • Try to stick to a whole foods diet.  Things like unseasoned stew, soup, etc.  Things easy-to digest, preferably not processed by a anyone except you.  Too often new celiacs start using gluten-free foods (cookies, bread, crackers).  Your body is not used to these grains and they often contain lots of junk.  For example, I react to Xantham gum.  It does not bother my gluten-free hubby, but it gets me every single time!   Did you read our Newbie 101 thread under "Coping"?   It contains lots of valuable tips.  Make sure those meds are gluten free.  Supplements too.   I hope you feel better soon!    
    • Here are the actual tests.   http://www.cureceliacdisease.org/screening/ Insist on the complete panel.  Let them know (your doctor) that your father had celiac disease.   Document in writing!  If you have celiac disease, your life can be improved.  All the things I attributed to aging were actually related to celiac disease.  It is never too late to feel well!  I am in my 50's but my Aunt iis 81.  We celebrate a Gluten free Thanksgiving every year!   Oh, my kid does not have celiac disease, but she is tested every few years even though she is symptom free!  There are silent celiacs.  My symptom?  Anemia.  No tummy issues.   Please advocate for your health.  Keep all records.  Doctors can not ignore written facts and requests.    
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