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End Of My Rope
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4 posts in this topic

I have been sick for over 4 years now, and im a 21 year old college senior. I have had about 5 or so different gastroenterologists, had 3 upper endoscopies, a colonoscopy, and multiple other upper and lower GI series tests. My blood tests came back positive for the IgG antibody. I had my first upper endoscopy and it came back negative- the Dr. said he didn't see anything wrong. The second one had the same result. The third endoscopy and third Dr. said that it didn't look like celiac disease but that my duodenum was "pale" which is indicative of malabsorption. Since Celiac disease causes malabsorption of the small intestine- I don't understand how with all of my symptoms, a positive blood test, and malabsorption of my small intestine that I could still not be diagnosed with celiac disease!! I was so infuriated.

I went on a gluten-free diet for a while and felt better. But after about 5 months it got too hard to handle and since I haven't officially been diagnosed with celiac disease, I didn't think it was really necessary. I am a college senior who does not like to cook and am pre-med with an extreemly busy schedule. Since I spend most of my time in hospitals as an EMT and with pre-med internships, I just don't feel like going back to insensitive doctors who will not do anything for me. But now my symptoms are getting a lot worse again and literally every time I eat (which usually contains gluten) I immediately have diarrhea. I tried to give blood a couple of weeks ago and my hematocrit was too low- the nurse there told me that I was mildly anemic. I don't know what else to do and am very much so at the end of my rapidly fraying rope. Does anyone have any advice for me or know of any good GI doctors who specialize in celiac disease in NJ or PA? I would really appreciate any help.

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Hi, I can't help you with finding a doctor since I'm not in your area but I just want you to know that there are a lot of people out there (and on this list) that are not officially diagnosed with Celiac. My doctor specifically told me I did not have Celiac. He's wrong.

I had symptoms for years, like you and have the runs every time I eat gluten. I went on a gluten free diet and all my symptoms went away. So to me, thats all I needed to know.

However when my mom started to show symptoms and my daughter gets belly aches a lot, I did have my genes tested and I have the 2 main genes that cause celiac. So that confirms it for me, my doctor was wrong and all the specialists I went to were wrong. You can have celiac and not have your intestines damaged (yet), which is why my blood tests were negative.

If you read this list a lot I think you will see that a gluten-free diet really isn't that hard. I travel often and I do fine out there in airports and the real world. I eat a lot of simple food, fruit, veggies, plain grilled meat, rice, potatoes. When I travel I always pack a few snacks for the plane. Find a good health food place, like Whole foods Market (I drive almost an hour to get to one) and they have a lot of great easy and quick gluten-free foods and snacks.

Each person has to make their own decision but for me to get rid of the runs, which I had for over 8 years (so badly I was often confined to my house) there is no way I'd eat gluten again.

I wish you the best! Susan

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I am in the same sort of position as you. I felt a freak with a denial-oriented world stacked against me. I have asked myself over and over, why should I follow this freakish diet?

I still need a suitably serious diagnosis, not only for my employers, but also - by giving it - my GP might catalyse himself into furnishing me with appropriate ongoing advice!

It was an excellent book by Karen Brody that listed on-line discussion forums on the subject and I have had my nose stuck in it every chance I have had, during (less than) the last 3 weeks.

As a result I have got proportion, perspective and courage and no longer feel outnumbered. The doctor is only human - in reality the outcomes of the various tests are truly, phenomenally variable - celiac disease has only so much as been heard of for a few decades - the advocacy person I've got hold of will somehow help me persuade the doctor to make some kind of helpful move.

There are thousands of posts here on every aspect from the last one and a bit years, from hundreds of special, special people that have been where you & I have been and are.

So glad you made it to get in touch.

Michael

:rolleyes:

P.S. there is a doctor portion of the forum, read it first in case someone in your area has already been mentioned.

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... I meant, stuck in this one ...

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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  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/  
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • 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 ...
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