Mixed test results, is it actually celiac?

[sara8246]

I've had a negative blood test by my doctor but a fecal test by Enterolab showed that my IgA was elevated, indicating a positive result. Due to mixed results and my doctor not trusting the Enterolab result, I've continued eating gluten- until recently. I binged on some gluten containing snacks (Gardettos and chicken nuggets) last Sunday and immediately my elbows got itchy/scaly. It's happened before and also on my knees, but previously I hadn't associated it with food. On Sunday after eating that stuff, I also felt a 'wall' in my brain, it's hard to describe, but happens occasionally and makes it hard to concentrate. Other symptoms I've had for a few years include depression and greasy/not normal stool.

I've cut out gluten and due to some cross contamination, I'm only on my 4th day of being completely gluten free. The day when there was cross contamination,  my elbows got itchy and I had to think hard in order to concentrate on work. Today (4th day of gluten-free), my elbows are stil red, but it's calmed down a lot and hasn't itched since the cross contamination. I've had a headache the past two days and have been craving glutenous foods, but I'm guessing those are just withdrawal symptoms.

Do you think I could have celiac or am I just making this into something bigger than it is? Is there anything else that could have caused the elbow rash?

Here's a picture of the elbow: Open Original Shared Link

[nvsmom]

It could be... Enterolab is not well trusted because their false positive rate is rather high, but there would be some actual positives in there too.

Did you doctor run the full (medically accepted) panel of celiac disease tests?  They are tTG IgA, tTG IgG, DGP IgA, DGP IgG (deaminated gliadin antibodies), EMA IgA, total serum IgA (control test) and possibly the older AGA IgA and AGA IgG (anti-gliadin antibodies).  Each test can miss up to a quarter of all celiacs, more if they are gluten-free, so it is best to run multiple tests.

If all tests were neative then chances are slim (but not zero) that you could have celiac disease BUT people who have the dermatitis herpetiformis expression of celiac disease (horrible, itchy, maddening rash) tend to have a higher rate of false negative blood tests.  If that is dh you have, you will have a harder time getting diagnosed. 

If you do do more testing, you need to be eating gluten in the 8-12 weeks prior to testing. About 1-2 slices of bread per day.

We have someone who is almost a dh expert (unfortunately for her). I'll point out your question to her and she may be able to help.

Best wishes.

[squirmingitch]

Thanks for the heads up nvsmom!

Sara,

I looked at your photo & it does look like dh does but there are other "rashes" that can look the same. DH is intensely itchy, a bone deep itch that will drive you insane. It tends to really crank up the itch volume at night. Hallmarks of dh are presentation on both sides of the body -- echoing itself so to speak. That does not mean that it always, always, always appears on both sides at one time but the vast majority will. It often itches for 12 to even 24 hours before anything at all appears. DH can come & go whether eating gluten or not. The gluten antibodies get deposited under the skin & just sit there like little bombs waiting to go off. With a dh biopsy you must be eating gluten just like for the blood panel. 60% of people with dh test false negative on the blood work and tend to have none to fewer, milder GI symptoms than the regular celiac. A dx of dh IS a dx of celiac & no further testing is needed. Elbows and knees are common places for the rash to present but it can & does present anywhere on the body that it feels like. Pressure points are common. Dh is extremely sensitive to the tiniest amount of gluten. 

Certainly it sounds like your rash is a gluten related rash. Unless you do a gluten challenge & get a derm who knows what they're doing to do a dh biopsy then you may never have an official dx. It is almost impossible to find a derm who will do the biopsy & knows how to do it right and doesn't want you to try this & try that & dx it as this, that or the other - scabies, dematitis, eczema, psoriasis, bed bugs. The biopsy is taken adjacent to a fresh lesion not on one. If you have taken oral steroids or had a steroid injection in the last 2 months then it can cause the biopsy to be false negative. Steroid creams should not be used for 2-3 weeks prior to a dh biopsy. 

Please go to the dh section & read as many threads there as you can. You will learn much from that. 

[sara8246]

Thank you both for your answers! nvsmom, I believe my doctor ran the first 6 tests, so it would have been the full panel. 

Squirmingitch- you mentioned that I'd have to be eating gluten for a DH biopsy- would I have to be eating it as much and for as long as is also recommended for the blood tests? I'm hoping I'll be able to find a dermatologist who knows about the biopsy, I'm living in LA so it may be more widely known. 

[squirmingitch]

As I understand it, yes. Here is the gluten challenge:

Open Original Shared Link

Confirmed here:

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There have been just one or two people on here who said they had quit eating gluten a week before or recently prior to a dh biopsy & still got a positive. I can only say that is your choice & decision. If I were going to go to the trouble of trying to get a biopsy I sure would want to give it the best shot I could & would stay on the gluten until the biopsy was done. 

You might read these & see if you can get a handle on a derm in LA who actually knows what they're talking about & has some experience with dh & doing a biopsy of it.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link