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d216 added a topic in Gluten Intolerance and BehaviorMisdiagnosed Or Not? That Is The Question!I am hoping that someone out there will help with my situation or can at least offer some better testings that what I have already gone through. I am a male who is now 25, but has been dealing with odd issues here and there since I was younger. One day I decided that I needed a change and went to a naturopathic doctor to get checked out (she is a D.O.) I told her that I had the following symptoms (I am going to list anything and everything hoping that it might spark someones own experience or test results);
1. Constant and painful canker sores
2. Abdominal pain
3. Bad gas all the time
4. Swollen tongue (for about 3 weeks)
5. Dry Mouth at night usually
6. Weight loss
7. Severe Sinus Infections
So she decided that I was to young to have these symptoms and gave me an extensive test called MetaMatrix. This test synthesized my blood, and also gave me a IgG 4 Food Antibodies test to see what I was allergic too. The Metamatrix test indicated that I was severely allergic to the following;
Mildly allergic to;
2. Navy Bean
And Moderately allergic to;
1. Egg White
In addition to these findings, I had an extensive Lab Corp Blood Test that indicated that I had test positive for billirubin( could signify gilbers disease-not a big deal I guess), low on testosterone, high on estradiol, and then positive for ANA & RNP antibodies.
She then put me on a gluten free diet, of which I followed for several months so that I could get tested for the ANA & RNP antibodies. I then had another test and they indeed were still positive and little bit higher. The doctor then refered me to a Rheumatoid Doctor.
When I saw the Rheumatoid doctor he reviewed my results from Lab Corp and told me that WITHOUT A DOUBT that I had an autoimmune disease called Mixed Connective Tissue Disease. He then prescribed Lunesta (sleeping pills) & Plaquenil to counter act the auto immune disease. He said that if the Plaquenil did not work then I would have to go on Heavy Steroids.
I left there feeling a bit strange, and overwhelmed to say the least and decided that I needed a second opinion. However, at this point I have spent thousands of dollars (b/c of my weak insurance) and decided to see a friend of the family who was an internal medicine doctor.
This internal medicine doctor told me several things. First, the MetaMatrix test was a complete bag of "B.S." and that I should not pay attention to the allergy readings. And, that I did not have an autoimmune disease because my symptoms were not strong enough.
So if you could imagine I NOW was feeling like an ALIEN. My first doctor prescribed that I had severe food allergies based on the MetaMatrix test, and that I should go on a gluten free diet. She also recommended that I go see a Rheumatoid doctor who told me that I had an auto immune disease with 100% certainty. I then saw another doctor who negated the first two doctors and told me that I wasted my money on tests, and that I did not have an autoimmune disease.
I was going to give up because of lack of funds, and because of the conflicts but decided that I could not just sit here so I went to Arizonia to visit the MAYO Clinic. There I saw all sorts of doctors, Rhematoid, internal medicine, I had an endoscopy, x-rays of my joints, etc.
This is where the funny stuff happens - In my first two LABCORP tests that cost me a $1,600.00 bucks to run, I was positive for the ANA & RNP antibodies. In my MAYO clinic test they could not detect a trace. It did not even register. The doctors were perplexed to say the least, and I was thinking that their tests were inaccurate. Then the Rheumatoid doctor, said based on my results that I did not have an autoimmune disease, but that it could be to early to tell. I think he was protecting his own ass, with some good news wrapped in there I then saw an allergist who gave me a skin prick test of all the items I was supposedly allergic to and it ALL CAME BACK NEGATIVE!
The endoscopy came back okay, but the doctor said that I should have another one in six months on a regular diet because they would not be able to tell if there was a problem because of the Gluten Free diet I had been on for 6-7 months.
So after spending countless hours, and $10,000.00 I am back to square one, and have decided to not see anymore doctors until I research and research and research. I am still having the following symptoms
1. Sinus problems (less now since I have been a sinus rinse)
2. Canker sores (tried all types of tooth paste)
3. Some Dry mouth
4. Bad Gas - abdominal pain
I noticed that if I had beer two weekends in a row (say two on Sat. and another two the following Sat.) I would have a canker sore to contend with. So I stopped that as well.
I am looking for someone who might have gone through similar results, and can point me in a direction. Maybe some tests that I should have etc.
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