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Tim86

Which Tests Should I Request For A Diagnosis?

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I have an annual physical with my doctor on Wednesday, and I plan to ask him about Celiac and gluten intolerance (we've never discussed it before). I attempted a gluten-free diet throughout March, and noticed a very slight improvement in IBS symptoms, but it wasn't definitive enough to convince me to stay on the diet. I've been back on a regular diet since the end of March. I'd really like to have some lab tests done to confirm/deny if I have Celiac or a gluten intolerance.

  1. Should I ask my doctor for specific tests, or just see what he suggests and go from there?
  2. Do you recommend starting with a few of the most common tests for an initial screening, and then follow-up with a more comprehensive group of tests if needed? Or just start right off with a comprehensive group of tests?
  3. Please list the tests you recommend, and classify them as "Initial screening tests" or "Comprehensive tests".
  4. I've learned that EnteroLabs might be a good option for testing, as well. Are the typical lab tests from a doctor expensive (even after insurance)? If so, should I consider skipping the doctor-ordered tests and jump right to the EnteroLabs tests? https://www.enterolab.com/StaticPages/Frame_TestInfo.htm#stool_gene_complete

THANKS!

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Why hasn't anyone responded, and why hasn't my topic been pinned yet? I thought this was the place to come for answers. I only have one day until my Dr appt., so I need answers soon, please!

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I have an annual physical with my doctor on Wednesday, and I plan to ask him about Celiac and gluten intolerance (we've never discussed it before). I attempted a gluten-free diet throughout March, and noticed a very slight improvement in IBS symptoms, but it wasn't definitive enough to convince me to stay on the diet. I've been back on a regular diet since the end of March. I'd really like to have some lab tests done to confirm/deny if I have Celiac or a gluten intolerance.

  1. Should I ask my doctor for specific tests, or just see what he suggests and go from there?
  2. Do you recommend starting with a few of the most common tests for an initial screening, and then follow-up with a more comprehensive group of tests if needed? Or just start right off with a comprehensive group of tests?
  3. Please list the tests you recommend, and classify them as "Initial screening tests" or "Comprehensive tests".
  4. I've learned that EnteroLabs might be a good option for testing, as well. Are the typical lab tests from a doctor expensive (even after insurance)? If so, should I consider skipping the doctor-ordered tests and jump right to the EnteroLabs tests? https://www.enterolab.com/StaticPages/Frame_TestInfo.htm#stool_gene_complete

THANKS!

i'll take a shot....

i pick door#1;

ask your doctor and see what he suggests.

then; be prepared to ask which tests... usually blood tests are first, a good decision tree can be found here:

http://cvi.asm.org/content/vol9/issue6/ima...0620098002.jpeg

print it and take it with you.

many docs like to measure total IgA at the same time as the blood tests -- since low IgA can confound some of the celiac serology.

but, as you can see from the 'tree', some docs like to wait for the 2nd blood tests... but, that would not be my preference.

if the tests are positive, he will, most likely, schedule an endoscopy.

you will need to be eating gluten both before and up to the tests for them to register postively.

no gluten in the diet; all tests will be negative -- even if you are celiac...

genetic tests are useless at this point.

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This the test serology panel to request:

Antigliadin antibodies (AGA) both IrA and IgG

Antiendomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

It is imperative to continue with a full gluten diet for the optimum accuracy. Enterolabs can indicate any sensitivities, but it will not/can not diagnose for Celiac. My suggestion is to follow through with conventional testing first. Good luck

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if the tests are positive, he will, most likely, schedule an endoscopy.

genetic tests are useless at this point.

Thanks for the reply. Why do they need to do an endoscopy if the tests were already positive. Are there false positives? I thought they did an endoscopy to rule out false negatives.

Also, why are the "genetic tests useless at this point"? Do you mean that I should already have the answers I need after those other tests, so the genetic test is unnecessary?

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This the test serology panel to request:

Antigliadin antibodies (AGA) both IrA and IgG

Antiendomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Thanks for the reply. Any ideas if these tests are extremely expensive compared to typical bloodwork labs? If some are expensive, I might want to stick with the decision tree provided by "gfb1". If not, I could request the whole list you suggested.

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I don't know a specific price range for the testing, it would probably depend on the lab.

But, I would think that it would be cheaper to do them all at once, and if they're going to take your blood, why not get the whole panel done to avoid having to go back for more bloodwork for the same disease?

If you are still eating gluten, genetic testing is not going to be nearly as conclusive as blood work. (Which still might not be) You can carry the gene(s) associated with celiac, but that doesn't mean you are going to develop it. For me, it was a last resort with my doc because of where I was when I saw him.

Prometheus, for example, will run the celiac panel and the gene panel at the same time. I'm not sure about others, but could be something to look into if you are curious about which genes you do carry. I do know that they are pricey... my gene panel was somewhere around $500 and I had a heck of a time getting insurance to pay for it. Even then, they only paid for a small percentage.

For diagnostic purposes, at this phase, I would pursue blood work/biopsy.

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Thanks for the reply. Why do they need to do an endoscopy if the tests were already positive. Are there false positives? I thought they did an endoscopy to rule out false negatives.

Also, why are the "genetic tests useless at this point"? Do you mean that I should already have the answers I need after those other tests, so the genetic test is unnecessary?

yes. after the serology and endoscopy you will have the answers you need.

there is NO genetic test to diagnose for celiac disease (as noone knows what gene or genes are causing the disease).

usually the celiac serology panel listed by mommagoose are done together ... but, the diagnosis tree remains the same.

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Thanks for the reply. Why do they need to do an endoscopy if the tests were already positive. Are there false positives? I thought they did an endoscopy to rule out false negatives.

Also, why are the "genetic tests useless at this point"? Do you mean that I should already have the answers I need after those other tests, so the genetic test is unnecessary?

Hi Tim.

You have gotten good answers about which specific tests to request-- these are called a "full celiac panel." They will be expensive (my mom's were several hundred dollars last year), but your insurance should cover the blood tests.

If you read a few older threads (you can search here,) you will see that there are no false positives. There can, however, be false negatives. This complicates the diagnosis. A positive blood test, according to many things I have read, apparently indicates that you have intestinal damage.

For doctors, the "gold standard" of diagnosis is the intestinal biopsy. They will be looking for flattened vili. Unfortunately, celiac damage is patchy and the biopsies frequently miss it (you have over 22 feet of intestine afterall). Ask you doctor to take multiple samples from different sites. It is possible (and fairly common) to have a false negative biopsy. I had this happen to me and I suffered eight more years until I got a positive diagnosis.

Some people (and more enlightened doctors) feel the positive blood panel is enough to diagnose. If you look on the main webpage here, they will tell you exactly how to interpret the blood work results. Some of those tests are highly (like 98%) specific for celiac.

Some doctors will diagnose based on a positive response to the diet. However, since you yourself seem to question whether the diet helped you, the biopsy is probably a good idea because if it is positive then you know for sure what you have to do to feel better. It can take a long time on the diet to see results (in my case it took only four days.) This can be because there are other food intolerances and getting totally gluten-free takes a sharp learning curve and newbies (even oldies!) get small amounts from things like vitamins or other items they are not suspecting.

One reason gfb1 says the genetic tests are useless is that something like 30% of the population has the genes people associate with celiac disease, but many do not ever develop it. So just having the gene doesn't mean you have the disease. But if you are diagnosed, the genetic test can be helpful if you have children, say, in that you know which ones are more at risk. Another problem with the genes is that there are lots of things they still don't understand yet-- like why the disease activates in some and not others. Or why some people who do not have the genes associated with celiac still get the disease. It is more complicated than "having gene X= celiac." The gene tests are an additional expense that won't tell you very much at this point.

Good luck in your diagnosis! If it is celiac, then you will at least have an answer. And may you feel better pretty soon! I was misdiagnosed with IBS-D for 23+ years, so I understand where you are.

Lisa

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