TESTING $650 :(

[GAIL OROURKE]

HI.  I'M NEW AND OVERWHELMED. FOR THE PAST 25 YEARS I'VE BEEN TRYING TO FIGURE OUT MY HEALTH ISSUES BUT I AM GETTING CLOSE!  MY NEW GASTRO DOC WANTS TO DO A GENETIC CELIAC TEST AND I FORGOT I GOT ONE IN 2017.  IT LOOKS LIKE I HAVE IT BUT AM CONFUSED WITH THE RESULTS.  I DON'T WANT TO PAY $650 FOR A NEW TEST IF I HAVE IT AND WOULD PREFER NOT TO SCHEDULE AN APPOINTMENT FOR HIM TO TELL ME I HAVE IT IF MY OLD TEST DETERMINED I HAD IT.  CAN ANYONE TELL ME IF THIS IS A POSITIVE CELIAC TEST?  I CAN'T REMEMBER IF MY DOC IN '17 TOLD ME TO SEE A SPECIALIST, BUT I KNOW MY HUSBAND DISCOURAGED IT SO I NEVER WENT.   

 

HLA-DQ2 POSITIVE

HLA-DQ8 NEGATIVE

HLA-DQA1* 02

HLA-DQA1* 05  

HLA-DQB1* 0201

HLA-DQB1* 0202 

 

[trents]

The two most important celiac marker genes are the DQ2 and the DQ8. You have a positive for one of them so yes, you have the genetic potential for celiac disease. This is not the same as saying you do have celiac disease. Genetic testing cannot be used to diagnose celiac disease since about 40% of the general population has one or both of these genes but only about 1% of  the population will develop celiac disease. Some kind of biological stress event is also needed to turn the genes on so that you develop active celiac disease. No, you do not need to have the genetic testing redone.

Your next step should be to get blood antibody testing for celiac disease done. There are specific blood tests for celiac disease. You should ask for these tests to be run:

Total IGA

TTG-IGA

TTG-IGA TTG-IGG

DGP-IGA

If any of them are positive, your physician may refer you to a GI doctor for an endoscopy with biopsy of the small bowel lining to confirm the results of the blood antibody testing. The biopsy checks for damage to the villous lining of the small bowel that celiac disease causes. The samples from the biopsy are sent to a lab for microscopic analysis.

What health issues and what symptoms do you have that suggest to you that you might have celiac disease?

Edited June 25, 2024 by trents

[GAIL OROURKE]

I have a first cousin and his two kids have celiac (one had stunted growth the other had extreme fatigued and pain).  We are not sure if his mom, my aunt, had it because she died in “89. My mom had similar issues to her older sister (they are both Christian Scientists and do not practice any type of medicine so I ll never know if my immediate family has celiac).  I have extreme fatigue, pain and severe bloating along with brain fog and severe constipation. In addition, my youngest sister also was very sick as a child and had stunted growth and is currently always bloated (4’10”).  She also practices the same religion. I have some blood tests scheduled but the other doctor didn’t request all of the ones you recommended. I’ll ask for the additional tests. Thank you!!! 

[trents]

Gail, it is important that you not begin a gluten free diet or even reduce gluten intake until all testing is complete, whether it be the antibody blood testing or the endoscopy/biopsy. 

I realize in my previous post that I mistyped one of those tests I am recommending. Please see my edit back there.

In the meantime, here is an overview of the tests available and their reliability. It is really important that the doc order the total IGA test because if that one is low it can suppress the TTG-IGA score toward the negative range. If the doc balks at running all the tests I listed, push back with at least the total IGA and the TTG-IGA. The TTG-IGA is the most popular test with physicians but some people's immune systems who actually do have celiac disease are different and don't respond normally to the TTG-IGA. That is the value of running the other tests or doing, as we say, a "more complete celiac panel" as I have outlined.

 

Edited June 25, 2024 by trents

[GAIL OROURKE]

Thank you!  Unfortunately, I haven’t had gluten for about 6 months and I’m having surgery in 9 days so I’m holding off as I want to feel well going into surgery soon but will get tested soon. This has been more helpful than any appointment leading up to today!  

[trents]

Gail, the way celiac disease works is that gluten triggers an autoimmune response that generates inflammation in the lining of the small bowel. This is the area of the intestines where all of the nutrition in our food is absorbed and why long term untreated celiac disease generally results in stunted growth and medical issues related to vitamin and mineral deficiencies, even though people may be eating well. The blood testing checks for antibodies that are associated with the inflammation. The endoscopy/biopsy visually checks for damage done by the inflammation. If you remove gluten from the diet then the inflammation begins to subside and the antibodies begin to disappear. So, there would be nothing to detect by the blood antibody tests. At the same time, their is healing of the villous lining of the small bowel that begins to take place once gluten is withdrawn such that there may be no damage left to see in the endoscopy/biopsy. 

If you get tested after being off of gluten for six months the tests will be invalidated. It will be a waste of time. Once your surgery is over, if you want to pursue celiac disease testing, then you would need to go back to eating generous amounts of gluten for a number of weeks in order for the antibody levels to build up again to detectable levels. We're talking about eating an amount of gluten daily for at least three weeks that is contained in 4-6 slices of bread or the equivalent. 

But this begs the question: If you have been off of gluten for six months already do you see improvement in your symptoms? If you are truly eating gluten free and not just eating less gluten then you should be feeling better by now. If not, your issues may be due to something besides celiac disease. 

[trents]

 

Gail, the way celiac disease works is that gluten triggers an autoimmune response that generates inflammation in the lining of the small bowel. This is the area of the intestines where all of the nutrition in our food is absorbed and why long term untreated celiac disease generally results in stunted growth and medical issues related to vitamin and mineral deficiencies, even though people may be eating well. The blood testing checks for antibodies that are associated with the inflammation. The endoscopy/biopsy visually checks for damage done by the inflammation. If you remove gluten from the diet then the inflammation begins to subside and the antibodies begin to disappear. So, there would be nothing to detect by the blood antibody tests. At the same time, their is healing of the villous lining of the small bowel that begins to take place once gluten is withdrawn such that there may be no damage left to see in the endoscopy/biopsy. 

If you get tested after being off of gluten for six months the tests will be invalidated. It will be a waste of time. Once your surgery is over, if you want to pursue celiac disease testing, then you would need to go back to eating generous amounts of gluten for a number of weeks in order for the antibody levels to build up again to detectable levels. We're talking about eating an amount of gluten daily for at least three weeks that is contained in 4-6 slices of bread or the equivalent. 

But this begs the question: If you have been off of gluten for six months already do you see improvement in your symptoms? If you are truly eating gluten free and not just eating less gluten then you should be feeling better by now. If not, your issues may be due to something besides celiac disease. 

Edit: Going back to eating gluten before testing after having been on a gluten free diet for sometime is called a "gluten challenge".

[GAIL OROURKE]

I feel significantly better but I eliminated gluten due to an autoimmune disease and I am just now circling back to determine if I do indeed have celiac as it was a struggle to think clearly and move forward without brain fog the last 25 years.  My joints and muscles feel much better and I can think more clearly and form an action plan which has been helpful.  I'm not looking forward to the gluten challenge as I have added it back in for a short period last year as I didn't realize how significant the pain was while I was eating gluten.  I'll enjoy it during the challenge but either way will not indulge in gluten after the challenge.  It'll be nice to finally have an answer.  I actually just looked up all my blood work since 2014 and I did have an elevated IgG Gluten test of 2.3 (<1.9) in 2014 which is in addition to the positive HLA-DQ2 gene in 2017.  

[RMJ]

I’m not sure what an “IgG Gluten” test is, could you give the full name so we can evaluate if it is a standard test for celiac disease?  If it is:

If you have the genetics to allow celiac disease, other autoimmune problems, some family history, a positive antibody test, and feel better gluten free, why put yourself through the torture of a gluten challenge?

Some people do need an official doctor’s diagnosis to convince themselves or others that they really do need to be strictly gluten free. There are also some doctors who won’t believe another doctor’s testing/diagnosis and try to make patients go through the challenge and testing that they’ve already done.

[GAIL OROURKE]

Unfortunately, the blood test only said "IgG Gluten" so that is all the information I have.  If I did have celiac I wouldn't eat any gluten, but i'm not super strict except for the two times when I eliminated everything that contained gluten (for instance I'll eat soy sauce or oats but not get gluten free or indulging in a pastry; however, since I am more knowledgeable now my food choices may be more strict moving forward .  Eliminating gluten if you have celiac is very different than being 97% compliant and can be dangerous from what I understand.  BTW: I forgot I had these tests until I researched them today so this doctor isn't aware of them; however, I will mention this to him next time I see him and will make that decision once I have all the information.  Also, I don't feel 100% better so I need answers.    

[trents]

59 minutes ago, RMJ said:

I’m not sure what an “IgG Gluten” test is, could you give the full name so we can evaluate if it is a standard test for celiac disease?  If it is:

If you have the genetics to allow celiac disease, other autoimmune problems, some family history, a positive antibody test, and feel better gluten free, why put yourself through the torture of a gluten challenge?

Some people do need an official doctor’s diagnosis to convince themselves or others that they really do need to be strictly gluten free. There are also some doctors who won’t believe another doctor’s testing/diagnosis and try to make patients go through the challenge and testing that they’ve already done.

"IgG Gluten" test is probably a reference to the DGP-IGG but it's an informal misnomer because these tests are checking for antibodies from the inflammation caused by gluten consumption, not gluten levels in the blood.

Edited June 26, 2024 by trents

[RMJ]

16 minutes ago, trents said:

"IgG Gluten" test is probably a reference to the DGP-IGG but it's an informal misnomer because these tests are checking for antibodies from the inflammation caused by gluten consumption, not gluten levels in the blood.

Or it could be a test like the one described here, which is NOT a test for celiac disease. The one described here has the same normal range which the original poster listed.

IgG gluten test

1 hour ago, GAIL OROURKE said:

Unfortunately, the blood test only said "IgG Gluten" so that is all the information I have.  If I did have celiac I wouldn't eat any gluten, but i'm not super strict except for the two times when I eliminated everything that contained gluten (for instance I'll eat soy sauce or oats but not get gluten free or indulging in a pastry; however, since I am more knowledgeable now my food choices may be more strict moving forward .  Eliminating gluten if you have celiac is very different than being 97% compliant and can be dangerous from what I understand.  BTW: I forgot I had these tests until I researched them today so this doctor isn't aware of them; however, I will mention this to him next time I see him and will make that decision once I have all the information.  Also, I don't feel 100% better so I need answers.    

That’s a good reason to get tested! 

Do you know what laboratory performed your IgG gluten test? Maybe we can figure out what type of test it really was.  It may not actually be a celiac test.

[trents]

I'm guessing you hit the nail on the head, RMJ. So, the OP needs to get some "real" celiac disease blood testing done if she wants to nail this down, not allergy testing.

[GAIL OROURKE]

I got it at LabCorp and looked again - F079 IgG Gluten, supposedly its for "it is an indication of gluten immune response and possible autoimmunity due to lack of digestive enzymes and/or other factors".  I have a blood draw form to get a couple tests but am going to ask for a few others which were suggested here.  

[RMJ]

43 minutes ago, GAIL OROURKE said:

I got it at LabCorp and looked again - F079 IgG Gluten, supposedly its for "it is an indication of gluten immune response and possible autoimmunity due to lack of digestive enzymes and/or other factors".  I have a blood draw form to get a couple tests but am going to ask for a few others which were suggested here.  

LabCorp doesn’t seem to offer that test anymore, but they certainly don’t mention celiac disease in your quote.

As discussed above, the antibody tests for celiac disease will likely give a false negative if you’ve not been eating gluten.