Got Biopsy Results, Need Opinions.....

[Raven815]

Hi everyone,

I received this in the mail yesterday. If I am reading this correctly, this test was positive, but they want to test further. When I was given this biopsy, the rash was in its infancy (got much worse after), and I had already been off gluten for a week before. Would any of that have mattered? Do I need to be back on gluten (been off for 4 weeks) for these tests to be done? I will not go back on gluten, so should I even bother? Conveniently, the derm did not send me the actual test results (makes me wonder). I am going to see my PCP this week or next and I will get copies of all tests. This is what the letter said:

Dear r/Ms Ln~

Your test results have returned and are listed below:(Your immunofluorescence biopsy came back and it is not conclusive. They commented that there were some speckles and granules of IgA in the upper dermis, but there were no large depositions that would be diagnostic of dermatitis herpetiformis. However, since the biopsy was not entirely negative, they suggested further testing. They said they have seen cases where there was a family history of DH and family members had fluctuating levels of IgA in skin dependent on consumption of gluten products. I have put in an order for tissue transglutaminase antibody and endomysial antibody. Please call the lab here and make an appointment to have your blood drawn. If this test is negative, you could take one of two approaches: you could go on gluten free diet and see if symptoms improve. If they did it would suggest either DH or alternatively a hive like reaction to gluten - they are different reactions which follow different immunologic pathways. Or, you could consider briefly increasing your gluten intake and repeating blood tests- a sort of gluten challenge.

Tests: Endomysial Ab

Tissue Transglutaminase Anti IgA

Electronically signed by: Dr. derm (isn't she warm and caring? gag!)

Well, since I have been off of gluten for a month now and my rash has dramatically improved, I would say that I am way ahead of her stupid advice, wouldn't you? Some kind of apology from her would have been nice, but I'm not holding my breath. Gods don't ever have to admit they're wrong, do they? I would love any and all opinions.

Thanks in advance, Laura

[squirmingitch]

Hi Laura. Yes, you would need to be back on gluten to do the tests & you would need to be on it for a bare min. of 2 months @ 3 or 4 slices of bread per day. YUK!!!!!! Really considerate of her to tell you that little piece of info also right? Tells you you can do a gluten challenge but doesn't say what you have to do to do it.

Furthermore, she's only ordered 2 of the 6 tests in the full celiac blood panel. Here is the full panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

She's determined that you will fail isn't she?

Forget about her. You have your diagnosis like so many of us who can't deal with the ineptitude of the "experts".

Happy gluten-free eating Laura!

[Ninja]

Personally, I think your derm is acting identically to the GI doctors who won't diagnose Celiac unless there is *complete* villous atrophy. You have IGA in your skin and the rash responds to gluten-free – I say you've got your answer!

Alternatively, you could try to send your biopsies to a celiac center for further review. A celiac expert may be more willing to diagnose you based on the tests you've already endured, family history and your response to gluten. Just a thought.

[Raven815]

Thanks, Squirming.

I figured that I would need to go back on gluten to get this testing done. No way. I've just finally started sleeping more than 2-3 hours at night and I'm on my way back to some kind of normal life. I would not even consider backtracking. In your opinion, isn't that letter a confirmation of sorts? Also, as another route, should I get genetic testing done as my Mother is a celiac? Would that take the place of a dx?

Thanks, Laura

[Raven815]

Thanks, Aerial,

That's what I also thought as far as the letter goes. I love your idea of taking my test results to a celiac specialist. There is a celiac center at the University of Chicago and I am in the western suburbs of Chicago. How lucky is that? I'm going to go to my PCP (hopefully) this week and get her caught up with my drama. She is a wonderful doctor and I know she will work with me. I hope she's not friends with the dermatologist I saw, because i plan on telling her everything. If she can't refer me to the university because of my insurance, I'll just go and pay out of pocket (scary).

Laura

[squirmingitch]

Yes, I agree that the letter is MOL a confirmation. She, of course, doesn't want to say that but we know she is a god & gods are never wrong nor do they apologize.

I forgot about your mom being celiac. Now I remember your story. I would think that any Dr. worth their salt would dx based on everything else as Aerial said. I don't know why your PCP wouldn't do it. If I remember correctly you were going to take photos or see your PCP when the rash got worse? That should be further confirmation PLUS the fact that you can prove it has improved on the gluten-free diet.

Quite frankly, IMHO, docs should start dxing based on the fact that people refuse to go back on gluten for a challenge! I mean, if we're that freaking adamant about not ever eating gluten again for ANY reason --- it sure ought to make them sit up & take notice.

[ravenwoodglass]

Thanks, Squirming.

I figured that I would need to go back on gluten to get this testing done. No way. I've just finally started sleeping more than 2-3 hours at night and I'm on my way back to some kind of normal life. I would not even consider backtracking. In your opinion, isn't that letter a confirmation of sorts? Also, as another route, should I get genetic testing done as my Mother is a celiac? Would that take the place of a dx?

Thanks, Laura

If your Mom is a diagnosed celiac and you are responding well to the diet you really have your diagnosis IMHO. If you want to find out the genes you have then go ahead and do a gene test. Just be aware that not all celiacs have one of the two most common celiac associated genes. Also since many carry the associated genes but never develop celiac it isn't always considered diagnostic by all doctors.

[Skylark]

Interesting to see how she turned around with the immunoflourescence results. Doctors can't admit they were wrong; they risk malpractice lawsuits. Kind of messed up that our court system has dehumanized them in that fashion.

It's a shame you didn't get the celiac blood testing before you went gluten-free. Yes, you would need to re-gluten after four weeks, especially if your symptoms are resolving. I think you're probably celiac with all the history. It's hard to explain the IgA they found any other way, even if it isn't as much IgA as they usually see with DH.

[squirmingitch]

I find it very interesting also that according to her the lab says :

"However, since the biopsy was not entirely negative, they suggested further testing. They said they have seen cases where there was a family history of DH and family members had fluctuating levels of IgA in skin dependent on consumption of gluten products."

During my time on this board & reading posts from before I was here re: dh; I have never seen a report of a lab saying such. It's commendable of the lab! Can you tell us what lab tested that biopsy? It would give people a reference to tell their docs about so maybe their doc would use the same lab. Someone was on the ball there.

[Ninja]

Thanks, Aerial,

That's what I also thought as far as the letter goes. I love your idea of taking my test results to a celiac specialist. There is a celiac center at the University of Chicago and I am in the western suburbs of Chicago. How lucky is that? I'm going to go to my PCP (hopefully) this week and get her caught up with my drama. She is a wonderful doctor and I know she will work with me. I hope she's not friends with the dermatologist I saw, because i plan on telling her everything. If she can't refer me to the university because of my insurance, I'll just go and pay out of pocket (scary).

Laura

Wow, that's great (and convenient)! Maybe your PCP will dx you? It seems that you have enough 'evidence'!

[Raven815]

I find it very interesting also that according to her the lab says :

"However, since the biopsy was not entirely negative, they suggested further testing. They said they have seen cases where there was a family history of DH and family members had fluctuating levels of IgA in skin dependent on consumption of gluten products."

During my time on this board & reading posts from before I was here re: dh; I have never seen a report of a lab saying such. It's commendable of the lab! Can you tell us what lab tested that biopsy? It would give people a reference to tell their docs about so maybe their doc would use the same lab. Someone was on the ball there.

Hi Squirming,

This biopsy was sent to the University of Illinois. That's all I know. Do you want me to find out more specifically where it went?

Laura

[squirmingitch]

If you can, that would be great!

[Raven815]

OK, I'm going to see my PCP on Friday. I'll ask for copies of all of my test results.

Laura

[squirmingitch]

Lovely.