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Peterpause

Unclear What Is Considered High Dgp

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My recent celiac panel said my Deamidated IgG was outside standard at 19.42 U/ml. The chart said standard was 0-15. But a lot of Googling tells me some experts (e.g. the Mayo Clinic) set the high end of normal at 20, which I would fall just inside of. 

 

My other three readings were on the low side: Gliadin IgA = 1.46; TTG IgA = 0.33; TTG IgG = 2.04. (All within the chart's "standard" range of 0-15.)

 

I was referred to a gastroenterologist because of strong symptoms (a year and half of neuropathy-type ailments, headaches, extreme fatigue, joint pains, restless legs, etc -- plus 15 years of chronic diarrhea). The specialist said she wasn't concerned about the DGP number, and that I likely had no celiac -- especially since most of my other lab results were normal (e.g. no mineral/vitamin deficiency, anemia, etc).

 

However, the specialist ordered up both an endoscopy and a colonoscopy, probably to put my mind at ease. But I found out at the last minute that the facility for the procedures was out of my insurance network, so it will be tricky and/or costly for me to go forward with the tests. Just trying to get a sense from this community whether, perhaps, I can cross celiac off my list and move on to looking in other areas for what might be causing my symptoms. (My GP had referred me to a neurologist and a sleep specialist, but told me to hold off seeing them after she saw my celiac panel.) I'm 52, but just got insurance again after ten years without seeing a doctor, so I'm playing catch-up with my health. (I am also battling high blood pressure, but so far the meds aren't having an effect.)

 

Thanks for any insights.

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I would not cross it off. My husband who has not been formally diagnosed, has been gluten-free for 13 years. By going gluten-free, he stopped snoring, lost the fatigue bad body aches, sinus infections,etc. I just had anemia and had no idea that I had celiac disease! My blood test was mildly positive, but I had moderate to severe intestinal damage.

You could have some intolerances too. Keep a food journal to help identify them.

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welcome!

 

was you IgA level checked as well to make sure you are a normal IgA producer?  each lab has their own values, and it looks like for your lab anything over 15 is considered positive.    DGP IgG was the only test I had positive on the celiac panel, and I've done so much reading about it over this last year.  At first my GI wanted to dismiss it, but he's really come around and at my last two appointments, he's said he believes my damage is further down from where a traditional endoscopy can reach.  

 

Initially the only deficiencies I had were low Vitamin D and K, and slightly low potassium.  I went on a strict gluten free diet last year in March, and each time I've had my DGP level checked it's fallen, but for my lab, I'm still in the weak positive range.  When I had my levels checked in December, my Vitamin K was still low, but my Vitamin D was normal because I'd been taking one 50000 iu supplement once a week.  When I went for my follow-up recently the GI thankfully ran some more tests, and I was found to be malabsobing both neutral and total fat.  I'm still waiting to visually see my results, but I did find out the other day with another test that was run that my pancreas is not functioning correctly and indicates pancreatic insufficiency.  

 

The only thing I had was a positive DGP IgG, and I'm a normal IgA producer.  Below are some links that hopefully you will find helpful.  Remember to ask the GI to take at least 6-8 samples during your endoscopy, and do not stop eating gluten until all testing is complete.  Good luck!

 

http://www.celiac.com/gluten-free/topic/100245-other-known-causes-of-high-dgp-igg-besides-celiac/page-2

 

http://www.celiac.com/gluten-free/topic/106693-new-test-for-non-responsive-celiac-disease/

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At your age, you should get a colonoscopy anyway.  Ask the GI if he goes anywhere that takes your insurance or can refer you to a GI that does.  Sometimes, doctors have preferred surgicenters (close to the office or the gym) but have privileges at other sites.

 

Keep eating gluten until you figure this all out.

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Thanks (to all three of you) for your thoughts. My guess is at some point I will experiment with a gluten-free diet, and it will likely help. What I'm confused about is that my "positive" is so weak and limited, but, for the past year and half, my symptoms have been pretty debilitating -- to the extent that I've had to carve away, oh, 80 percent of my commitments in life. (I didn't list all my symptoms above.)

 

What I'm worried about is that the gluten path might become a long wild-goose-chase that, in the end, makes me feel only a little better. If my screenings were more definitive I'd be more hopeful that I'd found the main cause of all my problems. (The new wave of symptoms came on with so much force a year and a half ago, and with such a systemic feeling, that I would think IF they were celiac-caused I would be seeing signs of secondary damage such as anemia, etc -- but doctors keep telling me I appear quite healthy.)

 

After talking with the gastro nurse yesterday I have some new hope that I'll be able to eventually get the endoscopy and colonoscopy, so that might help clarify things a bit. Meanwhile, I'll keep reading (including your helpful links) and trying to learn more. But I'm wondering if I should also be seeing the neurologist, the sleep specialist, etc. It can get expensive and time consuming, so, if I thought that there was a pretty good chance gluten could explain most of my symptoms, I'd probably just pursue this path for the time being. But the test results, so far, don't seem to support that.

Thanks again, Peter

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A quick follow-up, if you happen to know: when you say each lab has its own values, are you saying they're using different scales, or is it simply that they interpret the same results differently? I.e., is my lab just being more cautious than others when they say >15 is abnormal? I did find, via google, one other place that mentioned >15, but almost everyone else considered <20 to be within the normal range. But I'm not sure if I'm comparing apples to apples.

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A quick follow-up, if you happen to know: when you say each lab has its own values, are you saying they're using different scales, or is it simply that they interpret the same results differently? I.e., is my lab just being more cautious than others when they say >15 is abnormal? I did find, via google, one other place that mentioned >15, but almost everyone else considered <20 to be within the normal range. But I'm not sure if I'm comparing apples to apples.

Different measurement. Like inches and centimeters! :)

http://www.cureceliacdisease.org/archives/faq/i-went-to-a-different-lab-for-my-most-recent-follow-up-tests-are-the-results-comparable

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