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What Else Would Cause The Dgp Iga ?

Celiacmama83

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Celiacmama83 Newbie
Celiacmama83
Posted

I am wondering if anyone that understands the blood test to chime in. I had one positive test and it was the DGP IGA. Everything else was negative. I can't seem to find an answer anywhere. I just want to know if I need to ask my doctor to test me for some other disease. I am gluten free and have been for a few months, but lately I have had some really weird issues pop up and wasn't sure If its Celiac related or some undiagnosed issue. I'm so scared and I can't seem to get a doctor to help me. I'm pretty anemic and the doctors can't figure out why. I haven't had gluten since being diagnosed through blood work and I'm very careful when eating. I had a bad petechial rash pop up a few days ago and the doctors still couldn't figure out why it happened. I contacted the University of Chicago and they said that my results don't support a diagnosis of Celiac since everything else was negative, but my Doctor said that I have it since that the DGP IGA is very good. So confused and so over thinking I have something else, but can't seem to get a straight answer from anyone. I did not have a biopsy and went gluten free after my doc told me I was positive. I didn't know anything about Celiac disease and the importance of the biopsy. I'm too afraid to eat gluten just to get a positive biopsy :(

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nvsmom Community Regular
nvsmom
Posted

I've never heard of a positive DGP IgA being caused by anything other than celiac. I find it surprising that it's specificity is 93-96%, I expected it to be higher.... But with those numbers you have a bout a 5% chance that your positive test was caused by something else. If you have no celiac symptoms, and do not experience an improvement of your symptoms on the gluten-free diet, then it is possible you are one of the 5% who has something else. Chances are good it's celiac though.  :(

 

A biopsy is not necessary if you are unable to complete a gluten challenge.  Most doctors won't make you torture yourself with gluten if it's really hard on you. What has the doctor said about skipping the biopsy?

 

Sometimes doctors want all the stars, moons, and planets to align before they will give a diagnosis. If they won't diagnose you, and won't help you with whatever else they think is wrong, I think you should move ahead and start treating yourself for celiac. You might want to have nutrients tested as celiacs are often low in iron, ferritin, potassium, calcium, D, B12, and zinc.  You might want to check out your thyroid (TSH, Free T4 and Free T3) as many celiacs have thyroid issues.

 

Best wishes.

Celiacmama83 Newbie
Celiacmama83
Posted
  • Author

I've never heard of a positive DGP IgA being caused by anything other than celiac. I find it surprising that it's specificity is 93-96%, I expected it to be higher.... But with those numbers you have a bout a 5% chance that your positive test was caused by something else. If you have no celiac symptoms, and do not experience an improvement of your symptoms on the gluten-free diet, then it is possible you are one of the 5% who has something else. Chances are good it's celiac though.   :(

 

A biopsy is not necessary if you are unable to complete a gluten challenge.  Most doctors won't make you torture yourself with gluten if it's really hard on you. What has the doctor said about skipping the biopsy?

 

Sometimes doctors want all the stars, moons, and planets to align before they will give a diagnosis. If they won't diagnose you, and won't help you with whatever else they think is wrong, I think you should move ahead and start treating yourself for celiac. You might want to have nutrients tested as celiacs are often low in iron, ferritin, potassium, calcium, D, B12, and zinc.  You might want to check out your thyroid (TSH, Free T4 and Free T3) as many celiacs have thyroid issues.

 

Best wishes.

I've had a lot of blood work and nothing is coming up abnormal. I'm slightly anemic and my potassium is low, but other than that the doc said everything is functioning the way it should be. They just couldn't figure out why I had a severe rash and they might not ever know. Same with an allergic reaction I had a few months ago. Its just very scary. I do believe I have Celiac because 90% of my problems went away after going gluten-free, but new things have developed and that is what scares me. I'm so afraid of cancer and lupus and even RA, but my doctor doesn't think I have any of those :) Lets just hope he's right. Thank you so much for your input :)

nvsmom Community Regular
nvsmom
Posted

Celiac disease can cause a whole host of problems. I personally was quite afraid that I had lupus (had 4 of the 11 diagnostic markers) and I waited 8 months to see a rheumy. The rheumy was pretty certain that celiac disease was causing my problems (even months and months into the gluten-free diet). I'm hoping she was right as my  arthralgias are much better than they were a year ago.

 

Some people get lucky with the gluten-free diet and their symptoms clear up in months or even weeks.  Others are not so lucky and it takes a few years to get well. Unfortunately, waiting to see is the only way to tell. I hope you feel well soon.

BELMO33 Newbie
BELMO33
Posted

 What was your score on that DGP IgA Test?  I scored a 20 on by DGP IgA with nothing else positive, 6 months later I decided to do the blood test again with a different GI and it was a 16, all other ttGs and the IgG were similar or lower than the first test, the DGP IgG which was 12 the first time was 6.  The 2nd GI I saw was more specialized in celiac and said that DGP IgAs are strongly correlated because most of the time people test off the charts on them, usually over 30 which is the strong positive threshold, you're not going to get that kind of score with anything but celiac.  He said though that people who do test down closer to the threshold of 20 WITHOUT any other positive celiac test often times do not have celiac.  What DO they have is the question, most are often left with IBS diagnosis, so could a percentage of IBS patients have positive DGP IgAs?  Given we know there are many non-celiac IBS patients with gluten sensitivity I guess its possible.  I also exhibited some improvement in gastro symptoms when I went gluten free for 10 days or so back in March and also had nothing else off on regular blood tests such as potassium, iron or calcium levels.

Gemini Experienced
Gemini
Posted

 What was your score on that DGP IgA Test?  I scored a 20 on by DGP IgA with nothing else positive, 6 months later I decided to do the blood test again with a different GI and it was a 16, all other ttGs and the IgG were similar or lower than the first test, the DGP IgG which was 12 the first time was 6.  The 2nd GI I saw was more specialized in celiac and said that DGP IgAs are strongly correlated because most of the time people test off the charts on them, usually over 30 which is the strong positive threshold, you're not going to get that kind of score with anything but celiac.  He said though that people who do test down closer to the threshold of 20 WITHOUT any other positive celiac test often times do not have celiac.  What DO they have is the question, most are often left with IBS diagnosis, so could a percentage of IBS patients have positive DGP IgAs?  Given we know there are many non-celiac IBS patients with gluten sensitivity I guess its possible.  I also exhibited some improvement in gastro symptoms when I went gluten free for 10 days or so back in March and also had nothing else off on regular blood tests such as potassium, iron or calcium levels.

IBS is not a diagnosis of anything.  It just tells you that your colon is irritated and you need to find the cause.  It is the ultimate brush off.

 

I think if the DGP comes back as the only positive , it could very well mean that you haven't accrued enough intestinal damage for it show on the tTg. So, that's why doctors tell people to keep eating gluten so your intestines get REALLY damaged so they can find it easier.  Who wants to do that?  DGP will only be positive with a gluten issue.

 

To the OP.....you have not been gluten-free for very long so you very well may continue to have issues for a while.  Anemia can take a long time to resolve.  I was severely anemic at diagnosis and it eventually resolved. I was not re-tested for that until 2 years after diagnosis because I was so PO'd at the medical profession for their huge failures, I did not go back to my PCP afterwards and had to hunt for a new doctor.  If you are having new gastro issues at all, dairy might be the culprit.  I have to eat very dairy light because I cannot tolerate it well and that is common with Celiac Disease.

 

Please do not worry about all the things that could go wrong....you are wasting good healing energy on things you have no control of.  I was trashed at diagnosis and healed fine and I am no spring chicken!  ;)   Buy the book: Celiac Disease: A Hidden Epidemic by Dr. Peter Green OR Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler, MD.  You need to learn about this disease so you can make the right choices with regards to healing well.  Education is power.

 

nvsmom....maybe you can enlighten celiacmama with regards to petechie rashes?  :)

nvsmom Community Regular
nvsmom
Posted

nvsmom....maybe you can enlighten celiacmama with regards to petechie rashes?  :)

 

I had a petechial rash about 20 years ago when I developed ITP (thrombocytopenia) which is an autoimmune disease where your platelets are killed off (by spleen and white blood cells) so your body can no longer clot properly.  The petechia are tiny little spontaneous hemorrages under the skin and usually go hand in hand with extremely easy brusing and anemia (from blood loss).

 

Thrombocytopenia is easilyu diagnosable by doing a platelet count. Normal is about 150 o00. 100K is low and they usually treat you if you get down to 30K. I got down to 2K, but I think mine was more serious than most.

 

I'm not sure what else causes petechia to appear. Perhaps low potassium? 

 

Good luck!

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Gemini Experienced
Gemini
Posted

Thanks!  I did not want to worry anyone but you have way more experience with ITP than I do.  My co-worker has it so I learned some from him...he also had counts of down to 2K.

I think if the rash looks like this type, a platelet count is in order.

nvsmom Community Regular
nvsmom
Posted

You're probably right.

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