Misdiagnosed Or Not? That Is The Question!
Posted 25 October 2007 - 03:15 PM
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.
Posted 25 October 2007 - 03:55 PM
I had canker sores like crazy before going gluten free, and bloating - I mean painful horrible bloating, though I also got that from dairy. I was always constipated. I didn't have sinus stuff really, until recently when I've developed a couple allergies. The sinus rinse thing should certainly do the trick for that if it is allergies or just irritants.
Do you eat a lot of vinegar/acidic foods b4 the canker sores show up, or do they just show up randomly. Mine would go away w/i a half hour or so...do yours? Or do they stay? And the bloating...does it get worse in the hot shower, at night, when you eat ... or is it constant? Does passing gas make it feel better, or does it just go away on its own? And does your tummy hurt when you have the bloating?
Posted 25 October 2007 - 08:30 PM
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA
This is the panel of blood tests for celiac disease. The test won't be valid if you have been gluten free for 6-7 months. I noticed that some of the food allergies they said you had contain gluten: wheat (obviously), malt (barley), and rye. Beer contains gluten. People with celiac disease often can't digest dairy either. Canker sores are a classic symptom of celiac disease; I had them for years before I was diagnosed. Celiac can mess up liver tests as well. Your body is dealing with a toxic material (gluten) and gets overloaded.
There are different kinds of food allergies and tests. My naturopath gave me a blood test for IgG (delayed food allergies) and for IgE (immediate food allergies). I have noticed that my mainstream doctors do not believe in the IgG/IgE blood test results, but following the results helped my symptoms. I had skin prick food allergy tests before I was diagnosed with celiac, and the allergist never found anything. He did not figure out that I had celiac disease.
I don't know about the ANA or RNP antibodies. Good luck, and I hope you feel better soon.
dairy free since 2000, soy free since 2007
other food intolerances: citrus, sesame, potatoes, corn, coffee
Posted 31 October 2007 - 08:18 AM
In my 37 years as a Medical Laboratory Specialist and Lab Director, I have seen your kind of story all too often. Go see Michael Moore's movie Sicko. I can tell you from experience that this movie accurately describes the situation in the US. I'm not sure if you are in the US or not.
All people have bilirubin. It is a normal body product. However, it should be present in normal amounts. Too much and it may indicate real trouble, usually, but not always, the liver.
I know nothing about MetaMatrix labs but I did check their website. It seems that much of their work is on "non-regulated analytes" (a government term) Most of the more common lab tests are on "regulated analytes", which means the the lab doing the tests must be inspected and then regularly tested themselves to insure that they do accurate work. If most of the analytes are non-regulated, then that also means less regulation of the lab.
Mixed connective tissue disease (MCTD) is quite rare. The first thing I'd do get a second opinion, which you did, evidently at considerable expense to yourself. People do not realize how poor the level of expertise is among those who call themselves doctors, even those who have received real medical degrees. A great number of diagnoses are just plain wrong. In my early days as a lab tech, one of my co-workers was earning his way through law school by working in our clinic. One of the clinic doctors was so bad that this law student said that he was going to follow this practitioner wherever he went so as to be supplied with a steady supply of malpractice legal work.
I remember one medical provider who called the lab and wanted to know the results of the latest anemia tests on her patient. "She's been taking all her iron pills and she is still anemic," she complained. I could immediately see from the results that the type of anemia (Macrocytic) was not the type caused by iron deficiency. There was entirely a different kind of medicine the patient should have been taking. As diplomatically as I could, I explained the difference and how she could interpret the results to make the correct diagnosis.
Interpeting lab results is an important part of the job of every medical provider. but many do not have even these basic skills. It got so bad in my workplace that the lab bought the celiac disease version of a prominent medical textbook so that we could print off the appropriate information needed to interpret the lab results. We would then include the printout with the lab results.
Like many older men, I have my list of medical conditions. Most of these I have diagnosed myself and then had confirmed by the appropriate physicians. My celiac disease had previously been diagnosed as an ulcer and then as Irritable Bowel Disease (IBS) by supposedly fully qualified medical doctors.
I have spent my life in medicine albeit in a laboratory setting. I have the specialized knowledge which enables me to help myself. I have often wondered how average folks possibly get decent medical care. If I were they, I'd be madder than hell.
Posted 31 October 2007 - 08:33 AM
HA! it did it again! Every time I type these two letters which describe a common object that stores digital information (the third and fourth letter in the alphabet) in caps, the software changes it to "celiac disease."
Posted 31 October 2007 - 09:29 AM
There seems to be a problem with the forum software...........................
It's not a problem or a software glitch. It's programmed to change the abbreviation of celiac disease to the full words. You can't abbreviate compact disc, certificate of deposit, etc. - they must be spelled out. You can go back to the posting and edit.
Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)
Posted 01 November 2007 - 01:24 PM
Do you eat a lot of vinegar/acidic foods b4 the canker sores show up, or do they just show up randomly? Or do they stay?
I have to say that they show up randomly. And they stick around for over a week (10 days or longer) I hate them more than anything. I had my dentist look at them, who then told my doctor to look at them, and then my doctor told my dentist to look at them. And these are really great doctors.
And the bloating...does it get worse in the hot shower, at night, when you eat ... or is it constant?
When it was really sever, I actually had to go in the tub and sit there for a while (an hour or so). It was really uncomfortable.
Does passing gas make it feel better, or does it just go away on its own?
Majority of the time, it is a temporary feel good feeling and I have to wait at least an hour for it to go away.
And does your tummy hurt when you have the bloating?
It is a very dull feeling, but also hurts at the same time. When it occurs I really have to just sit around and wait for it to go away.
Thanks for the input, I am going to have to fully check out those tests more, and see where I can get them.
Thank you for your perspective. It has been a stressful ride so far. I am an entrepreneur in the U.S. who needs to get better insurance (but didnt because that is what I could afford), and when I say I have spent 10K, that is the low number. What I noticed is that the blood tests cost the most amount. I can go into a Lab, have my blood drawn, and come out spending a 1K - 2K later down the road. LABCORP is making a killing off guys like me. It got so bad, because the doctors kept running blood tests, that I said I couldn't do it anymore. So they came up with the solution that if they run the blood tests under the license, then I could get wholesale prices rather than paying the huge mark up. I actually called LABCORP because I was a little P.O. Their answer was that I should run it through my doctors, because my insurance would not cover the costs of the labs, and that they charge a higher premium because I am only doing one person, as opposed to a whole office running a lot of tests. This makes business sense, but when it comes to health, it hurts a lot.
I know there is an opportunity somewhere for affordable testing.
Now back to health related issues-
I do have billirubin as noted earlier, and it has consistently come up high on every test. Three doctors didn't seem alarmed, in fact they were casual about the test results. They just said I may have gilbers disease which is supposedly harmless.
That is interesting what you said about the METAMATRIX test being "non-regulated analytes" . Does this mean that the test is not accurate? I was also told by another doctor that the IGg4 is not an accurate measurement for allergies. The test was based on the anti body. Maybe that is why another doctor got pissed off when he saw this test, and said is was a complete bunch of B.S.
About the Mixed Connective Tissue disease - I had two blood tests for this disease and they came back positive. Even the Rheumatologist who told me that I 100% had this disease, and started prescribing all sorts of meds, told me that LABCORP was the one who developed the testing for this condition. He even told me that he was working under the doctor who came up with the exam. I then went to MAYO CLINIC who had their labs do all the necessary testing (in fact they told me that just positive ANA + RNP although not normal is not the only indicator for MCTD) My results came back without a trace. Thats when I said what the F*$k. They thought that the LAB that it could be the LAB and that they did not specialize in this sort of testing, and that it was important to find a lab that did specialize in MCTD, as well as, use another testing place other than LABCORP. My question to you is, how can you find another lab that specializes in this testing? I have yet to get another test because of the fiasco.
The Mayo allergist told me I have IBS just as you have been told. I actually don't know if I should keep pursuing celiac disease as a possible candidate or switch to something else. All I know is that I have had those symptoms.
Posted 01 November 2007 - 07:26 PM
Personally, I think if you want to spend any more money on testing, make it worth your while and do the Enterolab tests. Even though they are not allowed to diagnose you with celiac disease (since they don't do biopsies), they can diagnose you with a gluten intolerance, and will tell you what your genes are.
I myself am thoroughly disgusted with doctors, who have been pretty useless all my life, and rather rely on my own research skills and independent labs like Enterolab than my doctor. She has never diagnosed me with anything yet that I didn't ask her to test me for (and I've been right every time). And I am NOT in the medical field at all. I just like doing medical research and use my own common sense (which she doesn't have too much of, unfortunately).
Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.
Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma
Posted 02 November 2007 - 09:37 AM
Did you feel better on the gluten-free diet? If so, do it.
I didn't see that you at any point went on a dairy-free diet also. Dairy can cause gas and promote sinus infections, too. I used to have these problems all the time until I eliminated dairy.
I guess at this point you need first to know what of all your symptoms are diet-related, if any. Skin prick tests only show IgE mediated or immediate onset allergies. They don't show delayed onset problems that involve a different immune response. (Folks seem to differ in their terminology as to whether the delayed onset reaction is an "allergy" or not, which could be part of the problem.) I didn't show any "allergies" with skin prick testing, some years ago. But Enterolabs found I had IgA responses to gluten, casein, egg, soy and dietary yeast. I removed these from my diet and felt better.
I was satisfied with the Enterolab testing. You will find different schools of thought about it. The folks with problems with it center on the lack of a peer-reviewed study (so far). But it seems to me that you have done the standard testing and it hasn't given you adequate or consistent answers.
I recall reading recently that there can be false negatives with skin prick testing, too, even for IgE allergies.
You could go gluten & dairy free, and perhaps throw in an avoidance of soy (a common problem) and legumes (because of the first test result). Do this for a period of time and see how you feel. Keep a diary of what you eat and your symptoms. Do you feel worse if you have a lot of fat or sugar, for instance?
Your experience with beer could indicate a problem with gluten, barley specifically, or yeast. I guess you could get yourself some Redbridge gluten-free beer and see if you have the same symptoms.
I personally would want to see if my body could heal itself and operate properly by giving it the right fuel (a healthy diet without anything I am intolerant to). If I couldn't fix myself this way or by eliminating a few suspect foods, I would go on a full-fledged elimination diet. (One description:
http://www.drmcdouga..._allergic.html) Only if all this failed would I go to a doctor and consider drugs, etc.
Have you tried any of those online diagnosis sites, where you can input your symptoms and see what possibilities pop out?
Gluten free since 1/6/07
Soy free and completely casein and egg free since 2/15/07
Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other
Enterolab results -- 2/15/07
Fecal Antigliladin IgA 140 (Normal Range <10 units)
Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)
Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)
Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)
Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)
Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)
Fecal Anti-Soy IgA 119 (Normal Range < 10 units)
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