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Your Takes On Diagnosis
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Hi,

I have just recently had blood tests and biopsy, both came back negative. When I went to the doctor today for the biopsy results I actually met with the phsyicians assistant (who didn't do the biopsy, but read me the results). After hearing my symptoms he said he was very surprised the tests came back negative. I told him that I was off of gluten for a month and a half before testing and only went back on for a couple of weeks for the test (the dr said I only needed to eat gluten for 3 days prior to testing). The physicians assistant that I saw today said he wasn't sure if that would skew the results or not, but told me to just assume I have celiac due to my symptoms. Not really a diagnosis and a long story to explain to everyone that inquires. I guess I'm a little frustrated. Any advice ( I have been gluten free since the day is the biopsy, I just can't eat it) I'm just uneasy of the somewhat diagnosis.

Thanks!

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Signs of a gluten intolerance are not always found in the intestines via a biopsy. Other organs can be affected.

http://www.wesupportandywakefield.com/documents/ImmunGlutSenBeyond.pdf

http://www.biolifesas.org/ejoi/EJIv6i2abstracts.pdf

http://www.thedr.com/index.php?option=com_content&view=article&id=21&Itemid=23

Proteins from other foods, which leak through the intestines, might be causing your discomfort.

http://www.drlwilson.com/articles/candida.htm

http://www.holistictherapypractice.com/sage/index.php?option=com_content&task=view&id=87&Itemid=113

http://www6.ufrgs.br/favet/imunovet/pg/10%20Intestinal%20mucosal%20barrier%20function%20in%20health%20and%20disease.pdf

Many people in situations such as yours eat the paleolithic diet (no grain diet) for awhile (several months) and then might re-introduce proteins, one at a time, to see if the proteins from that particular food causes them discomfort. Also, once the candida is gone, and the holes in the intestines are healed up/closed up, one can tolerate other proteins better because they don't leak through the intestines anymore.

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Go ahead and stick with the diet being aware it can take a bit of time to heal. Not all of us have candida issues and even if you do that doesn't mean you would be able to add gluten back in if you are gluten intolerant or celiac. Going with a whole food diet is the quickest way to heal as there is less risk of cross contamination that way.

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I had very positive bloodwork as well as family history so I went Gluten-Free right away. I had a biopsy done a month later but never had any gluten before. My GI said it could take 6 months to a year to fully recover so he wasn't too concerned. My biopsy show some moderate signs but not slam dunk atrophy. It's been almost three months Gluten-Free and I'd never go back on gluten. If Gluten-Free agrees with you, stick with it.

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Just wondering how seriously to take the "your results are negative, but assume you have celiac" the doctor said he couldn't believe they came back negative due to the symptoms I have. I guess I was just looking for a yes or no answer and am afraid family and others won't take the "assume that you have it" as a real diagnosis. I'm tired of explaining it already....

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I think the best test is "go gluten free and see if you feel better". If you do, then you tested positive for gluten intolerance. Just tell "family" that you tested positive. Are they going to want to see the actual test results?

Chemical tests are not always accurate. You know how you feel better than anyone else. I would never put my health in the hands of a medical doctor, or believe 100% in their tests.

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I had a similar situation. After my son tested positive, I had the blood test done and it came back very positive. I went gluten-free (but only for about 2 weeks) before seeing the GI. He did more blood tests and endoscopy (said the short time gluten-free shouldn't make a difference). Everything came back negative. Went on gluten challenge (3 months) but only did it 1/2 way. At 6 weeks he tested me again (blood only) and it was still negative. By this time my son has been diagnosed with a biopsy and since I have all the symptoms I saw no reason to continue.

My doctor is certain I don't have celiac disease but diagnosed me with gluten intolernace. Whatever. Treatment is the same so I don't really care. I'm pretty sure I have celiac disease. Why else would the original blood test be so positive?

Cara

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I also tested negative with a very deep family history of celiac and intolerance. The doctor wanted to put me on IBS pills and I said NO. I immediately went on a gluten free diet after the nurse told me that it did not test for intolerance and I already feel a difference after a week and a half. Also, people claim there's a false negative rate of about 20% (not sure how accurate that is), but it just goes to show - do what makes you feel good. If removing gluten works for you, maybe try the diet and then reintroduce it to your system at a later date and see how your body reacts. That's what I plan to do.

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I think the high gluten content in grains now-a-days makes grains an undesirable food for human consumption. I have read that tens of thousands of years ago that wheat berries were plump and juicy, and contained very little gluten. Today

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So, reintroducing gluten to your diet in the future may not be the healthiest way to go.

Those are very good (and educational) points. Thank you for that information! Definitely want to do some more research out of curiosity now.

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Thanks everyone for the helpful info. I have pretty bad reactions when I eat even a small amount. Usually get a really itchy rash which lasts for about a day, headache, fatigue, and terrible joint pain (which lasts for several days). All of which I have had before going gluten free, but now much worse. I know I can't eat it, so I don't.

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That rash could be biopsied for a definitive diagnosis. Check out the DH board for details on the testing as it's finicky.

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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