DGP IGA

[ironictruth 57]

So, myself and others have only tested positive to DGP IGA. Mine was 32 recently on a gluten-free diet, but possibly exposed as it was totally negative before. 

I was confused by a quote on the Celiac Center's website saying if a weak positive is a DGP IGA it can be disregarded. So I queried. I got an email response informing me that for unknown reasons, the IGA is not reliable (especially if it is the only positive) and that he would be more convinced if my test had been DGP IGG. He suggested Crohn's which was ruled out.

So...naturally, the hospital I was recently in uses a combined assay for DGP so I have no idea which DGP was positive, I just assumed it was the IGA as it was very weakly positive before. 

I contacted the hospital and immunology also confirmed it was not reliable and that they would be replacing their combined assay with one that separates the IGA and IGG. Unfortunately my new GI is part of this hospital so I msy have to beg another doctor to re-run it as it was still positive a week ago on the combined assay. I have an appointment with the Cleveland Clinic next month and am gluten-free so would expect the levels to fall. I think it would be good to know which test was positive before then. 

It has thrown me back into limbo land which freaking sucks. Everything online says how accurate the DGP IGA is. I only found one study on the subject involving infants, which the authors even admit poses dilemmas, which suggests it is not. 

Has anyone heard of this?! Anyone else who had positive DGP IGA only with negative biopsy? Mine was negative last winter and my small intestine showed marked inflammation this August, but no villi blunting.  

[cyclinglady 1,663]

I would not call a 32 on a DGP IGA a "weak positive" (don't know the range and I am not a doctor).    What they like to call "a weak positive" is based  only one in the panel being positive.  That is what happened to me.  But in my case, my biopsy revealed villi damage.  However, you have been a "on and off" again gluten-free eater.  Perhaps getting gluten from cross contamination (you were eating out a lot, living with a gluten eater, etc.).  You have a brother with celiac disease.  Maybe they just missed the damaged areas.  If you are gluten light and the DGP is still mildly positive what is your plan of action?  

Not everyone falls into the "box".  Does it matter anyway?  You saw improvment on a gluten-free diet initially.  You did a challenge and now have many new issues that could be unrelated or related to celiac disease or a sensitivity.    Geez, I was glutened last year and developed a histamine intolerance resulting in itchy hives, swelling and rashes that took six months to resolve (not to mention other new food intolerances).  I know gluten causes damage to me.  I would know it now even without a diagnosis.  

 

[ironictruth 57]

The weak positive was last year (21). 19 and under is normal. It was 13 or 15 in July (cannot recall). The test in the hospital in August was a 28 (borderline) then a 32 a few weeks later. I think the 32 is moderate range. They retested a month later and it was still 32. 

A pathologist did send me an article and in no way does it say DGP IGA is not reliable. It just says the IGG is a bit more specific and better to use if IGA deficient which might be why they are opting to replace the combined assay. 

I have no idea where the Celiac Disease Center folks got the info from. 

I am not gluten light, I am 100% free now. It was negative in July so some exposure cooking at my boyfriend's did it, I no longer cook there). 

I was surprised it was still elevated a month later, and the exact same number. I guess I just got scared thinking maybe I was wrong. I still feel very poorly but get my thyroid ultrasound rechecked tomorrow, so maybe that is it. 

[cyclinglady 1,663]

It can take a year or longer for antibodies to go down.  Doctors just look for a downward trend.  And symptoms do not always correlate with antibody levels.  Some folks have low levels and high intestinal damage and some folks have high antibodies and little intestinal damage.  Celiac disease Varies with each individual. That is why you have to sift through the data/research and not take it verbatim as it may not apply to you!  

My antibodies were in the 80's in August.  Down from the 200's last summer (bad glutening) and that was taken almost five weeks after my hidden/cross contamination gluten exposure.  My last  80's  result?  My GI and I think I may have gotten  glutened again this past summer (was out of the country/home for five weeks, so what are the odds?)  or it could just be coming down from last year.  But we have no way to tell for sure.  i did not have horrible symptoms this summer.   Who knows?  

Nothing he can do.  I just have to focus on moving forward.  

I know you are feeling poorly still, but you have to be gluten-free for months or YEARS to feel well.  Be patient.  Hard to do, but that is the way it is.  

[ironictruth 57]

I know. It is just my upper insides feel so bruised and tender. It is actually what led to me putting a stop to running (that and the endo said to for now)  every time my foot would hit the treadmill I could feel the pain even more in my upper stomach I have been using slippery elm and marshmallow root. Not overdoing it though just small amounts.

 I am suspicious of a stew I made and ate two nights in a row that Caused a horrible burning in my upper stomach. Just vegetables meat and salt and pepper.

 With all of the other symptoms going on I guess I just got really scared maybe there was something else. I will admit that 6 weeks ago I was barely functioning and at least I can Now function.

[cyclinglady 1,663]

When I fractured two vertebrae doing NOTHING just two months after my celiac disease diagnosis, I was devastated.  I could handle the celiac disease diagnosis.  Heck, I had been making gluten free food for my hubby for 12 years and I knew the drill.  My learning curve was NOT steep!  But fractures?  Of course, I didn't know that I had developed osteoporosis as a result of celiac disease (same with my anemia).  

As you can tell, I am active.  I did not ride my bike for a year.  I did not do anything for  six months.  First, I worried about future fractures and then I just could not catch my breath due to the anemia.  So, I did some gentle walking.  (I also milked it and got out of lots of chores...."I can't carry those groceries....")  

Folks on this forum encouraged me.  They kept telling me to be patient.  I had to get off my bike when I was pregnant and I got off after my gallbladder surgery.  I knew I'd get back on my bike with time (at least I was hopeful).  My osteoporosis is holding steady.  I'm no longer losing bone mass.  My ribs and hips no longer ache when I am sleeping and  I'm back on my bike.  I even went rollerskating (though that's was really risky!)

Keep a food diary.  I can tell you that I have developed intolerances.  Some have resolved and some have not.  I still can not eat onions or garlic.  Was that in your stew?  Are you spices gluten free?  It's not always gluten that can get you!  

So, hang in there.  Take one day at a time.  Focus on positive things.  You can do it!  

 

[GFinDC 879]

Hi Ironic,

Maybe you should write down all the ingredients in the stew, and avoid them for a while.  Just in case you are reacting to one of them.  After a week or 2 try adding one of those foods back into your diet, and see if you get symptoms.  If not, then add another one of those foods back in.

I don't remember if you had food allergy testing?  Maybe that would identify some additional food problems?

But CL is right, recovering from celiac can take quite a while.  That doesn't mean you can't test other ideas out at the same time though.  Many of us have developed additional food intolerances over time.  Nightshades, corn, eggs, dairy, soy, nuts, and other foods can cause reactions in some people.  Doctors don't have many tests for food intolerances, so an elimination diet is the best bet.

Edited October 19, 2016 by GFinDC

[ironictruth 57]

Thanks guys. Very frustrated today. Was told I have Hashimoto's Disease. I knew my thyroid was swollen as neck/ear pain started kicking in during a gluten challenge. Went to ENT-nothing, pcp said sinus issues, blah blah. I finally asked for an ultrasound Of the thyroid which pointed to Hashimoto's but the antibody test the primary ordered was negative. 

 knowing something was not right I found my own endocrinologist. My first appointment he did tell me that the primary care doc had used An old test. What is it with my doctor using old tests?

So today, after getting a call from the endocrinologists office yesterday to confirm my follow up ultrasound, I get to my appointment and again am meeting with a PA younger then me. Ok...no issues, I have had 4 appointments since july and met the doc once. She goes over my vitamin levels then tells me the doc  is in an important meeting and cannot do my ultrasound today even Though it Was scheduled.

 As a single mom I just took 2 weeks Off of payroll recently because I was so sick and now I drove 45 minutes for an ultrasound that they're going to cancel at the actual appointment.  I was very polite because I have a hard time being assertive. They ended up doing the ultrasound and said it still looked inflamed but everything was fine.  my thyroid levels are fine. That's when they told me that my antibody levels from the last appointment had come back positive. They had never informed me of this before.  So I said to the doctor I have Hashimoto's then? And he goes yeah but 20% of the population has it. And I thought, wOuld have been nice to know like a month ago Though.  Kind of wondering why my neck and ear Has been hurting since February.

 my heart is still doing weird s***.  I cannot get a cardiologist to take me seriously since my echo and stress test are ok and I am in my mid 30's. My stomach really really really hurts and  is creating problems with my back. I'm pretty convinced it's not all due to the Celiac. It's so difficult to get these doctors to listen to you. I have an appointment at the Cleveland  Clinic and I'm afraid to take the time off of work again and to spend more money only to end up getting a half-assed answer.

 honestly I have not even seen the antibody blood work and the ultrasound went really quickly so who the hell knows if I even have Hashimoto's disease.  I would not be surprised as my dad is hypothyroid.