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Are There Less Expensive Ways Of Getting Tested?

sneaky-flute

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sneaky-flute Rookie
sneaky-flute
Posted

I suspect I have celiac disease and would like to have it confirmed before committing to a lifelong diet. The problem is that the blood test and biopsy cost thousands. Is there a way to get a definitive diagnosis without paying an arm and a leg? 

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bartfull Rising Star
bartfull
Posted

The only thing you could do would be to go completely and strictly gluten-free for a few months and see if your symptoms improve. Then go back to eating gluten for a while and see if your symptoms get worse.

 

If you see and improvement on a gluten-free diet and find your symptoms getting worse again when you challenge, you won't have a diagnosis but you will know you either have celiac or NCGI. The treatment for both is the same - strictly gluten-free for life.

kareng Grand Master
kareng
Posted

Knot sure where you live. Some of the Celiac Centers have free blood testing. You could also see if you qualify for any help? State? County? Public hospital?

LauraTX Rising Star
LauraTX
Posted

If you are trying to do it and can't afford the whole diagnostic workup, Karen's suggestions of a public clinic or research hospital are good.  If you can't find something like that, you could do one blood test at a time to let the results trickle in, and you may get something indicative enough of Celiac disease that you are comfortable calling it that without an endoscopy.  However, if you can manage any way to get the full diagnostic workup and endoscopy, that really can help you know if other things are going on, especially if it turns out to not be Celiac disease.

 

You could also just trial a gluten-free diet now like Bartfull said.  If you are really itching to know and your financial situation allows in the future, it will be a 12 week period of eating gluten.  There are a good number of people here on the forum that did that, and feel no need to go get formally diagnosed.  Just try to weigh the benefits and decide what is best for yourself.

sneaky-flute Rookie
sneaky-flute
Posted
  • Author

What is this "new" celiac test and how do I request it? 

kareng Grand Master
kareng
Posted

What is this "new" celiac test and how do I request it?

What are you referring to?

mamaw Community Regular
mamaw
Posted

No "new" celiac test.. I'm guessing you have no insurance? But if you have symptoms you can go to a free clinic like Bartful said...some states provide a GP doctor for people with needing medical help....Public welfare also has medical programs ...

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sneaky-flute Rookie
sneaky-flute
Posted
  • Author

I have insurance but from my understanding, these tests can set a person back a grand or two even with insurance. 

 

This test I'm referring to can identify celiac markers with greater specificity and you don't have to eat gluten before undergoing the process. Maybe it's not publicly available yet. 

kareng Grand Master
kareng
Posted

I have insurance but from my understanding, these tests can set a person back a grand or two even with insurance.

This test I'm referring to can identify celiac markers with greater specificity and you don't have to eat gluten before undergoing the process. Maybe it's not publicly available yet.

You can get a genetic test for about $300. It will tell you if you have a possibility of having Celiac. but 30% of people have a gene for Celiac and only about 1% actually develope Celiac. so just having the gene does not mean you have Celiac.

If you just want a basic Celiac panel, call Quest diagnostics and ask for the cost.

Edited to add: I am talking about legitimate, currently available medical testing.

LauraTX Rising Star
LauraTX
Posted

There are no scientifically valid tests (aside from the genetic test) that are accurate when one is not consuming gluten.  Getting something like that is a top priority for Celiac researchers but they are not there yet.  While I understand it is easy to assume something is not affordable, why don't you contact your lab of choice and ask about pricing before you assume as such?  Any money you spend on a diagnosis is an investment in your health for the rest of your life and well worth it in my opinion.  Also, unless your insurance plan has a stacked deductible, you are not going to be paying 100% out of pocket for lab costs.  You can get information on what your portion would be from your insurance company so you can estimate costs and save up to get them done if that is needed.

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
    • knitty kitty
      Coeliac or not coeliac

      By knitty kitty · Posted

      @CC90, Your Lansoprazole is a proton pump inhibitor and has immunosuppressive effects!!!!  This is why your endoscopy didn't show much damage to the intestinal lining!!  The Lansolprazole is suppressing tTg IgA antibodies in the intestines, but those antibodies are getting into the blood stream and causing inflammation and damage in other organs.   Proton pump inhibitors cause intestinal damage in the long run.  If you get off the Lansoprazole for a few months so your immune system is not blocked, then do a gluten challenge, and an endoscopy, THEN they would see intestinal damage. Sheesh!  Doctors can be so ignorant.  I've seen this so many times it's frustrating! Take the B Complex and Benfotiamine.  Get off the Lansoprazole.  Go with the DNA test results.   Welcome to the tribe! P.S. B vitamins are needed to correct anemia!  Not just iron.  
    • knitty kitty
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    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Thank you for responding.  I didn't intentionally reduce gluten prior to the endoscopy though I dont generally eat a lot of it due to the unpleasant symptoms. I was under the impression my TTG of 87.4 was very high, at least that's what my doctor said.  
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