This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
Where can I buy gluten-free stuff?
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Thank for those of you who took the time to read my situation. I am now going to try and respond to those that did;
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.
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.