Iga Deificient With Celiac & Dh

[Nolev]

Hi - I'm pretty new here and am wondering if anyone has had a similar experience. I'm 42, female. Got a rash ("dots" as I call them) in June 2014. Spread on my legs, bum, back, arms - SUPER CRAZY itchy and extremely symmetrical. First dermatologist did a skin biopsy which indicated drug reaction.  As I wasn't on any new meds recently, he decided it was insect bites and told me to buy RAID! (wrote RAID on a prescription pad!!).  Next derm took two more skin biopsies; came back as insect bites.  He had considered DH but decided not based on biopsies.  I went back to my rheumatologist (also have psoriatic arthritis for many years) who did blood work.  GP noticed some odd results, ordered more blood tests.  Referred to an allergist/immunologist - no allergies other than seasonal - but he was the first to verbalize DH to me - he was certain.  GP ordered more tests and it turns out I'm IgA deficient.  She sends me to a 3rd derm who orders celiac profile at hospital which includes IgG Transglutaminase test which is over the roof (>250 with ref range >15 abnormal).  My IgA Transglutaminase test is normal of course.   This gets me sent to 4th derm in a hospital who does a 4th (!!) skin biopsy: drug rxn or insect bites!!  At this point, GP refers me to GI doctor (btw I have ZERO gastro issues, no problems at all) who does a gastroscopy and diagnoses me with celiac!  Shocking to me.  As a result, Derm agrees I must have DH.  7 months passed until I finally got a diagnosis - much of it spent on Prednisone - getting fat and feeling awful.  So then I go strictly Gluten Free.  Now: 3.5 months later, bloodwork redone and my IgG Transglutaminase test comes back at 32.  Much lower - but my skin is still erupting and itchy and most dots just never go away.  Somewhere along the way GP gave me Dapsone btw and I had a major rash all over from it - so I can't take it.  Have since spent 6-8 weeks on many drugs, cycling through them trying to find one to help.  The only thing that helps so far is Clobex spray.  I am now on Sulfasalazine - giving me headaches but I'm trying to stay on as I read the headaches sometimes go away as you get used to it and I'm desperate for something to work. 

 

So my questions:

 

1. Being gluten-free with no results for so long is really difficult - I know I have read it can take 1-2 years - did anyone get better faster?

 

2. Is there anyone out there who is IgA deficient and was NEGATIVE for DH in skin biopsy but can confirm they do have celiac and got better on a gluten-free diet? 

 

3. Is there anyone out there who is IgA deficient and was POSITIVE for DH in skin biopsy?  Can this even happen?  My derm just isn't sure and I can't find any studies referencing IgA deficiency and skin biopsies for DH....(but I'm not medical so I don't have access to a lot...if anyone else does?)

 

Thank you for reading this long post

[squirmingitch]

Welcome to the club! I know you never wanted to be a part of this club but at least now you know what has been itching you to distraction. Ok, let's see. First, if you were on the prednisone or any steroids when they did the dh biopsy then that can make a false negative. Secondly, did they do the biopsy ON a lesion? If so, then you never had a dh biopsy. The dh biopsy is supposed to be taken on CLEAR skin ADJACENT to an active lesion. From what the derms came back saying it was I suspect none of them did it right. No one will ever get a dx of dh if a biopsy is taken ON a lesion! 

Okay, yes, IgA deficiency happens & that does not mean one is not celiac (and dh IS celiac). This is why it's so great that they now have the IgG tests - it helps to catch those people who are IgA deficient. You are one lucky (I know, I know, you don't feel very lucky right now) person that your bloods came up positive. 60% of celiacs with dh turn up negative on the blood tests. 

BTW, I can't believe the first derm wrote a script for Raid!!!!! What a dumb a$$!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm sorry you had the reaction to Dapsone that you did but it's not a new story around here. Far too many people have tried it & had to quit it b/c of reactions to it.

OK, your question #1 -- yes, there have been plenty of people who got better faster than 1-2 years. Plenty have gotten better in mere weeks, some more in mere months and some of us such as myself have been over 3 years BUT, & that's a big BUT, I have improved a billion trillion times. As I sit here typing I am not itching anywhere. That is not to say I haven't itched today or don't have any "dots" as you call them because I do but they are very manageable now. They are "pests" now whereas they had been so bad I actually did come close to eating a bullet and I'm not being flip when I say that. 

 

Backing up a bit ~~~ most of us with dh do not have the strong GI issues or have no GI issues at all. In fact, there are some "regular" celiacs who have no symptoms whatsoever. It's called silent celiac & it exists. The antibodies deposit under our skin with dh. DH is EXTREMELY sensitive to the tiniest amount of gluten. Dh can come & go wheter you're eating gluten or not UNTIL all the antiboies are out of your skin. You mentioned being on prednisone. Most of us but not all get a terrible backlash of dh from taking steroids. They can work on dh but the minute you go off them BANG! you pay & pay dearly with a flare you'll not soon forget.

 

To answer your question as to the IgA deficiency & the biopsies. I am not IgA deficient so can't reply and as long as I've been on this board --- just shy of 4 years -- I have never heard of anyone with dh who was IgA deficient & had dh. That doesn't mean it doesn't happen, it just means I haven't heard of it & I've never run across anything in medical studies or literature that addressed that issue. There has been relatively little research done on dh & there is likely not going to be a lot in future either. I don't imagine you would turn up positive on a dh biopsy (even one done right) if you are IgA deficient b/c the IgA deposit is what they are looking for with the staining under microscope but I'm no medical expert.

 

Here are some other drugs listed for helping the dh but they are not as effective as Dapsone.

sulfapyridine or sulfamethoxypyridazine

 

You might want to read this if you haven't already:

Open Original Shared Link

 

You might try going low iodine for a while & see if that helps. For a low iodine diet:

Open Original Shared Link

For most of us iodine makes the rash flare

 

Also NSAID's can make the rash flare. if you have to take anything then Tylenol is your best bet.

 

Have you read the Newbie 101? You need to make absolute certain you are not getting any cross contamination.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Nolev]

thanks for the links and thoughts - I truly apprreciate it.  It is odd to be "part of a club" and yet no one seems to be like me at all!!  IgA deficient with DH.....still searching....

I have read most of what you suggested.  A, being careful as possible abou contamination but I travel for work a lot and eating out of a suitcase is just not healthy.  I am choosing super simple foods and emphasizing my condition and only eating at places that seem to "get it" and "care". Since my blood work came down by so much, my GI dr tells me I'm doing a good job.  Re: iodine, I'm making sure that my iodine intake is reduced but not eliminated - too hard to focus on gluten-free and iodine at same time.  No iodized salt at home, that kind of thing...

Sulfapyridine is apparently not available in Canada which is why we're trying Sulfasalazine which is super similar  apparently.  (??)  Clobex is helping too.  But I'm still itchy all the time.  Aspiring to be like you one day - typing and not itchy....  thx

[squirmingitch]

I read on the other thread it's been about 3.5 months that you've been gluten-free. Hang in there. I didn't really see much difference for months & months. I would have a day here, a day there where things would be a tad better & then the next day it was like I had imagined the previous day. This is a mental battle every bit as much as a physical battle, I learned that early on. You CAN get through this!!!! Loose clothing is a key. 

Yes, it's great that your blood came down so dramatically so quickly!!!!! You're doing GOOD! Keep it up. One day, one day, you will find yourself not itching. Ice packs when you get going insane. At some point hot Epsom salt soaking baths will help. {{{HUGS}}}

[Nolev]

thanks again - yes 3.5 months.  It is a mental battle - some days I think maybe docs got it all wrong - othr days I'm more rational and know this is the correct diagnosis, it just takes time.  Instead of ice packs, my sister taught me to put rice in a fuzzy sock in the freezer  - it is the perfect kind of cold and soothing to the skin!  And for baths, I use Keri Bath Oil which helps.... 

 

STILL FEEL LIKE YELLING: ANYONE ELSE IGA DEFICIENT WITH DH?????

 

(don't know why - just want to know)

[squirmingitch]

I would be extremely interested in anything you find out.

 

I've been thinking about your case & it seems to be so highly unusual. I would suggest you contact Dr. John Zone as well as Dr. Alessio Fasano and tell them/ask them about your situation. Dr. Zone is one of the leading derms in the research & treatment field of dh and Dr. Fasano is one of the leading researchers in celiac disease. If I were you I would also send them copies of your records so they can look at the lab results. I think both men would be terribly interested in your case and will also be able to explain to you the IgA deficiency with dh.

Here are links so you can learn about them & contact them:

Open Original Shared Link

Open Original Shared Link

 

Open Original Shared Link

 

If you do contact them, please report back here what they had to say on the subject. We could all stand to learn from their input.

[Nolev]

How would I get in touch with them and give them my info?  Wouldn't they want me to book a consultation?  I'm in Canada and I have no experience with US healthcare.  I went to the links you sent but I only see phone #s to book a consult.

Also re: Dr. Zone, I found him in my research and tweeted to him hoping he might notice or reply.  He didn't....(but he is not active on twitter).  Any advice on how to send them my tests results?  thx

[Nolev]

Open Original Shared Link

This seems like the definitive article about my condition....they want to charge me $31.50USD to read it....hmmmm - well the abstract confirms that there were at least 2 people with partial iga deficiency and DH.  Doesn't mention the skin biopsy - maybe in the article itself.... if anyone has it, would love to read it.....

[squirmingitch]

Ha! Look; Dr. John Zone is one of the authors of the article. And it's from From the Department of Dermatology, University of Utah Health Sciences Center Salt Lake City, Utah -- where he is.

 

I was thinking you could write a snail mail to the University each is associated with. Just type it out & then print it. Print out your test results. But all that may be a moot point now with the article you found. I do wonder when the doc said you are IgA deficient JUST HOW deficient you are. Perhaps you are partially deficient. If the doc was speaking in general terms then it's likely he would simply say "IgA deficient". 

 

I can't find the full article anywhere for free.

[Nolev]

I actually have all my blood tests - my IgA levels are 0.07 g/L (=7mg/dL I believe).  This qualifies as Selective (not partial) IgA Deficiency.  Also btw the Deamidated Gliadin Antibody IgG test was borderline for me (10 U/mL with >15 being positive).  The Tissue Transglutaminase IgG result was ">250 U/mL" (with same ref range >15 being abnormal or positive for celiac).  Apparently the lab had never seen such a high number....

[Lobstah]

Biopsy for this is pretty easy to screw up.  For confirmation, my doc wanted an endoscopy, which was fine because I needed on for my Barrett's anyway.  After the procedure, the GI doc said if there was any doubt in anyone's mind before, it was now officially diagnosed with 0% chance that I did NOT have Celiac.

 

In fact, I'm getting ready to get on the bone broth bandwagon to help heal my gut.

 

As for time...just know you're doing the right thing.  I don't think I've had any kind of iodine reaction...but tough to say.  We live on the Gulf Coast and love seafood...especially Florida Pink Shrimp.  I guess it's possible that my iodine intake makes me more susceptible to a break out from contamination, it's just impossible to tell.

I also travel for business, so there's always a threat of cross-contamination from that as well.

 

One of the more difficult aspects is there are no quantities.  You can't measure the sensitivity.  What amount of gluten will trigger something?...no way to know.  So it becomes a a situation where you shut off everything.

 

My wife believes they'll eventually come out with a pill for celiac disease, similar to lactose pills...I hope she's right