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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.

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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    • No gluten allergy because I don't have classic symptoms of celiac
      I've been strictly gluten free for four years. Three years I went off other grains such as rice which tested very high . I have one of the genes. My mother has Celiac and I had an endoscopy for reflux and the took biopsies and Doctor said " You Do Not Have Celiac" . This is the office that said just eat a cracker before the endoscopy and it will show up if you have it. I did not eat that one cracker LOL  I don't have "typical" celiac symptoms and have tested positive for multiple food sensitivities. Having those tests done helped enormously. One   one accidental exposure last fall which gave me my first case of Dermatitis Herpetiformis which left scars )  does indicate Celiac . I'm really rattled because endoscopy for reflux said I have reflux and chronic gastritis ( and I did not know that already?) I've done so much research I have books ! and watched my mother suffer so much and this just flies in my face. So you need to trust your gut most of all( or your symptoms)  I honestly did not expect him to find anything at all but to be told with absolute certainty I do not have celiac and don't need to worry  feels nutty to me .   Next time I get the rash( I hope I don't) I will get a biopsy . 
      "Dermatitis herpetiformis, also known as DH and Duhring’s disease, is a skin manifestation of celiac disease. Extremely itchy bumps or blisters appear on both sides of the body, most often on the forearms near the elbows, as well as on knees and buttocks"
    • A good diet for avoiding type 2 diabetes
      Hey, I am a member of that forum (not very active though).  But that's exactly how I eat.  They base their diet on this site: http://www.phlaunt.com/diabetes/ A year after my celiac disease diagnosis, my GP tells me that I am prediabetic via an email.  Instructs me to improve my diet and exercise more.  What?  I exercise more that most my age.  I run, swim, bike and teach a few exercise classes.  Change my diet?  I am gluten free.  I can not give up my gluten-free goodies!  It was asking for too much.  But I did know about celiac disease and the connection to Type 1 diabetes and Type 2 runs in my family.  So I found Jenny's site.  It made sense and I continued to research more.  Bought a Walmart meter, started testing my foods and found that "snap" I had huge spikes!  Kept meticulous data for a month and went back to my doctor.  He agreed.  I am insulin resistant and the writing's on the wall.  How to stop or slow the progression?  A low carb high fat diet.  Within three days, my blood sugar readings were normal.  Keep tracking and went back to my doctor who was amazed.  He told me to keep doing what I had been doing -- and it's been 2-1/2 years! Here's a recent study from the University of Alabama: https://www.uab.edu/news/innovation/item/4997-low-carb-diet-recommended-for-diabetics Sometimes you just have to take things into your own hands.  If I had just cut down on sugar, I 'd be on drugs and insulin and struggling to keep my feet from being amputated.  That's an exaggeration (not really), but really who cares if my foot gets chopped off?  My doctor?  He's nice, but pretty busy.  No, it's all on me!   Guess what?  I am happy on my diet.  I was addicted to sugar.  What's the biggest thing to change in our diet over the last 100 years?  Sugar.  It's in everything!  California just released a study stating over 50% of all Californians are prediabetic or have diabetes and most don't even know they have it (hummm....sounds like celiac disease).   http://newsroom.ucla.edu/releases/majority-of-california-adults-have-prediabetes-or-diabetes Enough of my soapbox talk......I've got to get some stuff done!  
    • healthy bread recipe?
      One month into the diet and she's probably very constipated because she HAS celiac disease.  She needs more time to heal.  Maybe six months to a year.  Why so long?  In theory, she should heal within weeks, but it takes a long time to really master the gluten free diet and learn about cross contamination and shared manufacturing lines.  Plus, consuming lots of gluten-free items right off the bat, may be contributing more to her health problems.  We had kids on this forum who did not drop their antibody levels until they eliminated processed foods.  20 parts per million may just be too much for her to handle right now. I would recommend reading our Newbie 101 section under "Coping".  It has some nice tips.  I would strongly recommend feeding her whole foods.  She can get plenty of fiber from fruit and veggies.  I do not even eat any grains at all, but that's my choice because grains spike my blood sugar just the same as cane sugar (I have diabetes too).   After she has healed, you can introduce breads and all kinds of junk food!     By then you will not remember what real bread tastes like.  Ask my non-celiac kid.  She's likes gluten-free pasta now.  She admits that she has forgotten what real pasta tastes like.  She adores all my baked-from-scratch gluten free cakes and cookies (that I can not eat! ) When I was diagnosed, my learning curve was easy.  My hubby had been gluten free for 12 years!  So, I ate like him.  Turns out that I was reacting.  Found out that because I was in the healing stage, I could not tolerate additives like Xanthan Gum (really needed to replace gluten in bread), preservatives, etc.  found in commercial breads and baking flour mixes.  I had lots of food intolerances that eventually resolved and some did not!   Okay. Villi damaged but not gone?  Is your doctor crazy?  Your daughter has celiac disease!  I strongly recommend getting her records and lab results and getting a second opinion.  She should have been diagnosed by now.  You should be looking into keeping her safe at school with a 504 plan (but a 12 she shouldn't be playing with playdough, but colleges will have to accommodate her diet and that's coming up faster than you think!)   Welcome to the forum!  I hope this helps.  
    • Received Results. Looks like not Celiac?
      If I were in your shoes, I would first test out a histamine intolerance diet before going gluten free.  Migraines and  fatigue seems to scream histamine intolerance.  It's most widely known in Europe, but it is gaining some ground here in the US.   But, I am not a doctor and I do not know you.  What I can suggest is that you do some research and continue to advocate for your health.   If you go gluten free, then it's six months.  If you had celiac disease, it would take that long to heal or longer!  It's a hard diet to follow when your results are negative, but nothing's impossible!  
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