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End Of My Rope

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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.



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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    • Yes, GFinDC you've got the gyst of what I am after. If I am reading your response correctly then, you think that inflammation in the gut caused by gluten ingestion is enough to trigger diarrhea, quite apart from the state of one's mucosa? That would be good news for me. More information on this inflammation reaction in the gut with gluten ingestion is precisely what I am after, but cannot seem to find. Because, as stated, as far as I know, D is mostly if not only, caused by flattened villi. OTOH, how interesting to hear from you, cycling lady, that you had flattened villi and no D! RMI, the link is quite depressing. Many appear not to have healed mucosas after a gluten-free diet. A repeat endoscopy is what is so clearly needed by many of us, but honestly I am a little wary of the risks.
    • No, they didn't test my ttg igg, which I was surprised about considering the low IgA and positive DGP Igg. (The tests they did were IgA serum, Ttg IgA, DGP Igg and IgA and gene testing) If he ever returns my call, I was going to ask him about that.  He initially wanted to set up a endoscopy, but I told him I had one last year (with my prior GI) and he said he'd take a look at it and we'd go from there, except that was two weeks ago and I haven't heard from him.  My prior GI did take biopsies, I believe to rule out H.Pylori and I was told biopsy results were normal, however, I didn't receive a pathology report or anything like that.
    • What GEE EFF said!  Look for incubators, some business schools and even community colleges will have classes  about starting your own business & info about financing one.   There is a lot more to a business then just making and selling and getting someone else to buy the food  Taxes - paying and collecting in different cities or tax zones, health department codes, liability insurance (vehicular and general business ), renting a health dept approved kitchen,  a small business lawyer to help you "become a real company", permits, "booth fees", etc.  You can probably avoid some of it right now, just selling at a local farmer's market.   add- You might check with your state.  Some states have funds or low interest loans.  It helps if you are a "minority".  
    • i've researched a little about the genes i have you can find out if they are assosciated with other illnesses/autoimmune diseases. but i don't think knowing the details of every gene is going to help diagnose you any futher than just knowing you have the gene becuse either way it just means you have an increased chance.  if you're iga deficient did you have ttg igg as well?
    • I don't know if there are any grants specifically for gluten-free products Ennis.  But the SBA in USA deals with small business startups and may have information to help you.   There may be small business incubators in your area also.  Sometimes they are associated with university business schools and the SBA.  Marketing a product commercially and labeling it gluten-free is a possible issue though.  There are now FDA rules on labeling products gluten-free.  So you need to study those before getting to far into it.
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