One Celiac Gene and Positive DGP-IGG

[FiveApples]

TLDR - I have one celiac gene variant - HLA-DQA1 and my DGP-IGG was elevated (11.2149U/mL). However, none of the other antibodies (ttg iga - 1.7, ttg igg - 3.3 , dgp iga - 4.1) were elevated. What's that mean?

Hey guys, my digestive issues have been going on for years and have been largely ignored before this past year when silent reflux burned my esophagus to the point that I could no longer swallow pills or many foods. An ENT said I needed a battery of tests after looking in my throat, then never called to schedule them, presumably because covid locked down hospitals for anything but life-death situations for a while. Though she also didn't even manage to get a non-pill-form omeprazole to the pharmacy for me like she said she would and never returned my phonecalls about it. I was left with the option of paying an arm and a leg for the prescription of buying otc and crushing when it should have been a free prescription with my insurance if she'd just entered the right one. Obviously not going back to Dr. Idiot. 

I got the reflux under control myself after a couple of months (reduced coffee, dairy, gluten), then started doing at home tests to try and figure out the root issue. To be clear, I've been asking doctors what could be wrong with my digestive system since I was 13, I am now 31, and they've run minimal tests related to digestion. I got diagnosed with gastroparesis some years ago but it only seems to happen when I eat too many eggs so that doesn't really seem like an issue. I've had low bmi all of my life, I'm always vitamin deficient, I'm always exhausted, no matter how healthy I eat. I'm also always hungry despite eating near 4k cals a day with minimal exercise. Not just like a little hungry, I feel insatiable all the time, even if it's only been an hour since I last ate. I'm 5'3" and 94-96lbs. I have idiopathic nerve damage diagnosed through a punch biopsy and had POTS prior to supplementing iodine. 

Anyway, the home tests. I have one celiac gene variant - HLA-DQA1 and my DGP-IGG was elevated (11.2149U/mL). However, none of the other antibodies (ttg iga - 1.7, ttg igg - 3.3 , dgp iga - 4.1) were elevated. 

I know I should go to a doctor and ask, but honestly I'm so fed up with them that I'd rather eat lead. I'm tired of them trying to tell me I need to eat more cause they think I'm a lying anorexic. I'm tired of them telling me my weight's not a big deal when I can see every one of my ribs. I'm tired of it being crystal clear that there's something very wrong with me and them acting like everything's fine. I'm just tired of them. So, I would like opinions, are the two tests above enough to conclude that I have celiac? It doesn't seem like much. And aside from giving me a diagnosis stamp, is there anything else a doctor would even be able to do about celiac if that's what this is? Isn't the treatment just... no more gluten? Is there another test they would have me do if I went to see a doc? 

[FiveApples]

Oh, and my maternal aunt was diagnosed with celiac at some point if that matters. I don't talk to her enough to feel comfortable asking her about it. 

[trents]

Welcome to the forum, FiveApples!

You said: "I got the reflux under control myself after a couple of months (reduced coffee, dairy, gluten), then started doing at home tests to try and figure out the root issue. "

By reducing your gluten intake before you did the antibody testing you likely sabotaged the results. Also, when you post antibody test numbers on the forum, please include the reference ranges for negative vs. positive. Those are not industry standards. They vary from lab to lab.

Edited May 25, 2022 by trents

[FiveApples]

1 minute ago, trents said:

Welcome to the forum, FiveApples!

You said: "I got the reflux under control myself after a couple of months (reduced coffee, dairy, gluten), then started doing at home tests to try and figure out the root issue. "

By reducing your gluten intake before you did the antibody testing you likely sabotaged the results.

Thank you! Unfortunately, I had to do something to alleviate symptoms as I couldn't sleep through the night even with a wedge and a special pillow. The testing kit I ordered said it would still be accurate as long as I continued to eat small amounts of gluten daily, which I did. So maybe they were still somewhat accurate?

[trents]

27 minutes ago, FiveApples said:

Thank you! Unfortunately, I had to do something to alleviate symptoms as I couldn't sleep through the night even with a wedge and a special pillow. The testing kit I ordered said it would still be accurate as long as I continued to eat small amounts of gluten daily, which I did. So maybe they were still somewhat accurate?

The Mayo Clinic recommendation for a pretest gluten challenge is two slices of wheat bread (or the equivalent) daily for 6-8 weeks leading up to the day of antibody testing.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with celiac disease but does not damage the small bowel villi and so, does not produce antibodies. There currently is no test for NCGS. Celiac disease must first be ruled out.

[Scott Adams]

To me it sounds like you've already identified wheat as a culprit for some or all of your symptoms. You could do a gluten challenge as @trents mentioned and get another blood panel done, or your could just go gluten-free. If your aunt has it your odds of having it are higher, and you already know that you have the genetic markers that make celiac disease a possibility for you. If giving up gluten for life is too big of a prospect for you to consider without a formal diagnosis, then I'd encourage you to get retested.

Also, given that it looks like you had one positive blood test for celiac disease, your doctor may want to schedule an endoscopy, and if so, you'd only need to eat wheat daily for 2 weeks beforehand.

[FiveApples]

2 hours ago, trents said:

The Mayo Clinic recommendation for a pretest gluten challenge is two slices of wheat bread (or the equivalent) daily for 6-8 weeks leading up to the day of antibody testing.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with celiac disease but does not damage the small bowel villi and so, does not produce antibodies. There currently is no test for NCGS. Celiac disease must first be ruled out.

I definitely don't think I was eating that much most days (though some I ate more). Can high dpg-igg be present without any kind of wheat thing going on?

[FiveApples]

33 minutes ago, Scott Adams said:

To me it sounds like you've already identified wheat as a culprit for some or all of your symptoms. You could do a gluten challenge as @trents mentioned and get another blood panel done, or your could just go gluten-free. If your aunt has it your odds of having it are higher, and you already know that you have the genetic markers that make celiac disease a possibility for you. If giving up gluten for life is too big of a prospect for you to consider without a formal diagnosis, then I'd encourage you to get retested.

Also, given that it looks like you had one positive blood test for celiac disease, your doctor may want to schedule an endoscopy, and if so, you'd only need to eat wheat daily for 2 weeks beforehand.

At this point it seems like I may as well just quit gluten for a while and see what happens. If it fixes the issues I can commit. I really don't want to go back to a doctor. I feel more than a little resentful about how they dismissed my issues until things were completely out of control. Thank you!

[trents]

This might be helpful in understanding the several dimensions of eliminating gluten from your life. And I want to say it's not about cutting way down on gluten, it's all about eliminating it altogether. Even small amounts of gluten can keep the fire smoldering: 

Also be aware that those with gluten sensitivity issues are frequently intolerant to other foods. Common among them are dairy, oats and eggs. So, you might want to keep a food diary so as to spot patterns between your symptoms and what you have been eating. There can be a delay of 24 hr. or more between the consumption of an offending food and the experiencing of symptoms.

[Scott Adams]

5 hours ago, FiveApples said:

I definitely don't think I was eating that much most days (though some I ate more). Can high dpg-igg be present without any kind of wheat thing going on?

I am pretty sure that the dpg-igg test is fairly specific for gluten, but it is the best test to use in those 7 years old or younger:

https://pubmed.ncbi.nlm.nih.gov/22197936/ 

It's possible that it is a false positive test, but unlikely I think.

[trents]

11 minutes ago, Scott Adams said:

I am pretty sure that the dpg-igg test is fairly specific for gluten, but it is the best test to use in those 7 years old or younger:

https://pubmed.ncbi.nlm.nih.gov/22197936/ 

It's possible that it is a false positive test, but unlikely I think.

Or IGA deficient adults. https://pubmed.ncbi.nlm.nih.gov/22197936/ It is very specific for celiac disease.

[GF-Cate]

On 5/25/2022 at 4:59 AM, FiveApples said:

Anyway, the home tests. I have one celiac gene variant - HLA-DQA1 and my DGP-IGG was elevated (11.2149U/mL). However, none of the other antibodies (ttg iga - 1.7, ttg igg - 3.3 , dgp iga - 4.1) were elevated.

And aside from giving me a diagnosis stamp, is there anything else a doctor would even be able to do about celiac if that's what this is? Isn't the treatment just... no more gluten? Is there another test they would have me do if I went to see a doc? 

Honestly, I would probably get an official diagnosis if you can, even if it means switching doctors - you may be able to find a celiac-aware doctor in your area on this forum or others. Bringing a support person to your appointment may get them to take you more seriously. Also, be sure to note your family history of celiac.

Yes, the treatment is just no more gluten, but if it is celiac follow-up care should be performed (which should be covered by your insurance if you have an official diagnosis). You can certainly pay for your own bloodwork/nutrient testing out-of-pocket thru labs like Ulta Lab Tests, but it does get costly. But repeat biopsies and bone mineral density (which really should be done) would have to go thru a doc. 

https://celiacdiseasecenter.columbia.edu/celiac-disease/follow-up/

Also, in the future things such as dietary needs for a hospital stay may be taken more seriously if it is "official". Since celiac is an autoimmune disease, you would be at higher risk for developing other autoimmune diseases. And if you have any kids now or in the future, they should be tested (as well as other biological relatives), as they would have a greater change of having celiac too.

https://www.beyondceliac.org/living-with-celiac-disease/talking-to-your-family/getting-the-conversation-started/family-testing/#:~:text=Remember that celiac disease can,or sooner if symptoms develop.

Here are a couple of links to good overviews of the various celiac tests:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

https://www.beyondceliac.org/celiac-disease/get-tested/

It took me quite a while to not have insatiable hunger as you describe after dropping gluten and adding vitamin supplements to get my nutrient levels into an ideal range (still working on a couple) - I had to eventually go dairy-free also. Abnormal hunger did eventually diminish though (over years, not months).

[GF-Cate]

Additionally, here is a link about the DGP-IgG test:

"A positive test result means that it's likely you have celiac disease."

https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=dgp_celiac_disease

It does not look like a total IgA level was measured in the bloodwork you had done? This is usually included in the celiac panel because if a person is IgA deficient, the IgA tests will be invalid (in which case they would look at IgG or  other tests for diagnosis).