I’m talking about the new at home testing kits for Celiac disease. Many people talk about not having insurance or the ability to pay for expensive Celiac testing at the doctor, but there are new at home testing kits.
Before I go further, I want to say this – a positive blood test result alone does indicate Celiac disease. If testing at home, please take your results to a board certified Gastroenterologist to discuss the results and next step. We all know I firmly believe that both blood test and upper endoscopy must both confirm Celiac in order for an accurate diagnosis. If they disagree, you and your doctor should communicate regarding the issue. Furthermore, during testing for Celiac, you must remain on a gluten containing diet otherwise tests may be inaccurate.
Now onto the fun stuff….
A simple Google search yields the top three results for at home testing for Celiac disease – LetsGetChecked.com, 23andme, and imaware.
I’ve done a 23andMe DNA test. My results for Celiac Disease were accurate. I have one copy of DQ2.5 and do not have DQ8. These are the two haplotypes associated with Celiac. There is some research into other genetic markers, but they have not been scientifically proven yet. So, I would say they are not useful yet. If I’m searching for answers, I would probably start here. It tells me if I have the genetic markers for Celiac or not. If I don’t, then I need to look elese where for my issues. If I do have a marker, then I can take the next step.
Carrying either of the genetic markers for Celiac does not confirm or deny that Celiacc is present. About 40% of the population carries one of the two markers and only about 1% of the population actually has Celiac disease. It just says that you carry the genetic material for Celiac to arise.
Next, onto the blood tests.
First, there is LetsGetChecked.com at $119. They say they test TTG and EMA. Now, what they don’t tell me is, TTG-IgA or TTG-IgG. I guess it doesn’t really matter – but I wish they were more specific. The EMA IgA test is 99% specific to Celiac but is not as sensitive as the TTG tests. The EMA IgA test can be subjective and is difficult to process. So, it has some difficulties. However, they don’t test for total IgA which is used as a control in Celiac testing. If there is an IgA deficiency, the TTG-IgA test is invalid.
They do have a video with instructions on how to do the test and say that if your tests are positive a nurse will call to discuss the results.
Next, is imaware.com at $99. They say they test TTG-IgA, TTG-IgG, DGP-IgA, and DGP-IgG. Again missing is the control of total serum IgA. The DGP tests are easier and cheaper than the EMA tests, but are not any more accurate or specific to Celiac. Many times the EMA tests are preferred over the DGP tests, but what can you do? There is no video, but there are simple instructions for taking the test. There is also no nurse to call you if you have positive results.
Here’s something interesting – I did another Google search “Celiac Panel without prescription”. I found UltaLabTests that do the “Celiac Panel with Reflex”. So, they do Total Serum IgA, TTG IgA, TTG IgG for $48. But if the TTG IgA is positive, they do the EMA IgA at an additional cost. If EMA IgA is positive, they do a EMA Titer for an additional cost. If Total IgA is out of range low, they do the TTG IgG. So, this tests could cost significantly more than the $48 or if all the tests are negative you are only out $48.
Truly Gluten Free?
There is also GlutenDetective stool and urine tests to see if you have truly been gluten free or if gluten is sneaking in your diet. I’ve used two of the urine tests, but they have never been positive. I have two stool tests sitting in my medicine cabinet, but I haven’t used them. According to their website, ” The urine test should be used when a major exposure is suspected in the past day. The stool test should be used on a regular monitoring basis (weekly, biweekly, monthly) to detect total accumulated gluten exposure over the previous week.” (Next time I poo I’ll test and see how it goes.)
This would be interesting to use if you are certain you’ve been glutened and what if it came up negative. I think this happens a lot. At $22.50 per test, these are not inexpensive and though it is fun to test, I don’t know that I want to bear that expense. That was the price on their website, it might be cheaper elsewhere.
Maybe I’ll try some of these tests next time I go to the Gastroenterologist to see if these tests match up to the lab tests from my doctor. But, I think if you are uninsured or just want to monitor how you are doing, they might be worth a try.
I’m not recommending these tests, I am not saying they are accurate, and I am not being paid by any of them. I’m letting you know what I found online regarding less expensive testing for Celiac.