Should I Test For Iga Deficiency?

[whitmore]

Hi everyone. New here and hoping my story resonates with some of you and that you can help me out. 

 

Here's my story:

Have felt unwell for 9 years now.

Started thyroid medication(Armour) and b12 shots back in March of this year.

Developed a rash(hard yellow pustules) , which developed into weeping sores that are mostly between  my shoulders and down my arms, but are all over, including 3 on my face.  Skin rough to the touch(unusual for me).

 

Went to Dermatologist #1 in May--diagnosis=itching/scratching.

 

Switched from Armour to Synthroid/Cytomel thinking might be allergic to Armour. Sores continued.

 

Dermatologist #2 in July--biopsy negative for fungus/bacteria.

Blood test for celiac(at my suggestion) negative. No total IgA.

Topical elidol, then steroids. No improvement.

 

Stopped the B12 shots. Sores no better.

 

Dermatologist #3 in October. High potency steroid, no improvement.

 

Adjacent biopsy for Celiac and other autoimmune stuff. Negative.

 

GP: various blood tests for autoimmune. Negative.

 

One thing that resonated with me was that years ago when I was suffering from night sweats, my OB/GYN tested me for TB and other illnesses. She commented that I had no antibodies to any of these things, and that she'd never seen that before. Which leads me to my latest theory of possible IgA deficiency. However, if I am IgA deficient, how could I have DH, if that is what this is? Isn't it the IgA that causes the rash? Or do other Immunoglobulins step in and cause the same problem in the presence of deficiency? 

 

Also now realizing that it could be the iodine in the thyroid meds. that have triggered this, if it's DH.  

 

So the question is, is it worth having a blood test for IgA deficiency? Any ideas?

 

Regards.

 

Sue

 

 

 

 

 

 

[1desperateladysaved]

There are other antibodies to test, you should do a complete celiac panel.  I have similar issues with IgA  and my MD said that I am not an allergic person.  You could be IgA deficient, and it might be interesting to know.  But if it were me, I would want to know if I had celiac disease or not.  Your symptoms sound really suspicious to me.  Part of the celiac panel tests IgG antibodies, sometimes these are high when IgA is not. A test or two more is also on the panel and I am hoping someone else will post the panel test list.

 

You must be eating gluten for a DH(rash)  biopsy.  The dermatologist should biopsy it.  If one has DH that is celiac.

 

After all other testing is done, the final test is to go gluten free and see what happens.  Best wishes for your return to health.

 

D

[whitmore]

I have already had the full celiac panel, but not a baseline IgA. The panel was negative for celiac.

 

I have also had a DH biopsy--also negative(taken from an area of skin adjacent to a new sore).

 

I'm  not especially interested in my IgA status--but am concerned that despite these results, I could still have an issue related to gluten.  Particularly since this rash is entering its 10 month and despite seeing 3 dermatologists, I have no diagnosis.

 

I'm really wondering if it's possible for a DH biopsy to result in a false negative result due perhaps to IgA deficiency.

 

Sue

[GF Lover]

Hi Whitmore, and Welcome to the Community 

 

I'm wondering, were you on the steroids when the adjacent biopsy was taken?  I think this can affect the result.  We need member SquirmingItch to chime in here.  She knows everything about DH.  I'll see if I can snag her for you.

 

Colleen

[1desperateladysaved]

The full panel celiac tests that I got for my daughters included total IgA as part of the test.  Maybe you should check on that.

 

D

[squirmingitch]

60% of celiacs with dh test false negative on the celiac blood panel so there goes that neg. result. Plus they often miss tests in the blood panel --- more often than not. So many people don't end up with a FULL blood panel but that is sort of a moot point here in this case.

If you've been taking steroids in the past 2-3 months before any of the celiac tests (blood or dh biopsy or even endoscopic biopsy) then the result will be a false negative. It's very difficult to get dx'd with dh b/c docs just don't understand/know this. It looks like you were on the steroids when the dh biopsy was done which makes the biopsy a wash. In other words, you still don't know. You might as well not have had the biopsy. Even when a biopsy is taken correctly & you have been actively eating gluten for the proper amount of time & not been on steroids for the proper amount of time ~~~~ the LAB that examines the biopsy has to really know what they're doing & the tests they perform are subjective so there's a ton of room for error!

 

Since you were on steroids then I'm betting (but can't say for positive) that all those tests for anything autoimmune are junk. Steroids ramp down the immune response which is contradictory to the tests to discover immune problems.

 

A couple things stand out to me though in your case.

1) DH is insanely itchy. Absolutely drive you out of your mind. crazy, just shoot me & be done with it itchy!!! You didn't really mention anything like that.

 

2) When ppl with dh take sreroids the steroids work to control the dh & you thing YAY! BUT the moment you go off them the dh comes back quadruple fold & punishes you like you wouldn't believe for using steroids for it & then removing them. You didn't mention either of these things happening.

 

I'm going to have to say, IMO, it doesn't really sound like you have dh. Not saying it isn't possible but it doesn't seem like it.

 

As far as a test for Iga -- you can get one but that's up to you. It would be better to go back to the derm in 3 months after you've had NO steroids & get a dh biopsy performed again.

 

I hope this helps. 

[whitmore]

Thanks, Squirmingitch for the valuable information and taking the time to reply.

 

Re itchiness. Should have mentioned that the rash was very, very itchy. And curiously awesome to scratch and pick the scabs off of(sorry--gross!).

 

Was applying a topical steroid(clobetasol proprionate foam), dotting it on the sores, up to the day of the latest DH biopsy, possibly even that morning(can't remember, since it was the 14th day of the course).  Also, on the day of the test I was taking cortef(17.5 mg a day, alternating days with adderall for adrenal issues), so could this combo have invalidated the test?  Agree, did not get the 'YAY' moment with the steroid foam, but was very very conservative with it.

 

Not being on the cortef for 3 months is really not an option. It enables me to hold down a job and pay for healthcare! Would it still invalidate the test by itself i.e. w/o the topical? It's a very small physiologic dose(equivalent to about 4 mg of prednisone).

 

Regards.

 

Sue

[squirmingitch]

It's hard to say Sue. I can't give you a definitive answer. I wish I could. There just hasn't been a great deal of research on dh to delineate exactly where the lines are when talking about stuff like that. The other thing I forgot to say about the dh biopsy too is the stuff in the skin gets destroyed very, very quickly & easily with scratching. So even if the derm takes the biopsy from adjacent to an active lesion like they're supposed to; if one has scratched that area when scratching the actual dh itself...... then that can be a no go.

How badly are you looking for an official dx? You could just go gluten-free & see what happens but I have to tell you (I think you already know this as it sounds like you've been doing some reading) the dh can continue to present for long, long after going gluten-free so it's not like you quit gluten & have your answer immediately. The antibodies have to get out of the skin & that can be a L O N G road.

 

Answer this..... does the itching go into major overdrive come night time? I mean, it's insane all the time but at night you either won't be able to get to sleep or it will wake you up & you won't be able to go back to sleep. Does it present bilaterally? Ghosting itself on opposite sides of the body?

[whitmore]

Thanks again for your reply.
 
The itching does not keep me awake or wake me up usually. The itching does feed on itself. When I'm at work, areas that are inaccessible are left alone.  It is bilateral and very symmetrical and seems to appear in a symmetrical fashion.  Started on back, then butt and breasts, then lower legs, then upper arms, then lower arms.  These areas are surrounded by very rough skin, though unaffected areas are not rough(neck, thighs, stomach, face). Scratching the very rough skin results in tiny bits of hard matter coming out and this may then initiate a sore, though not all the sores were started by scratching. In the beginning, they appeared as red bumps that then had hard white centers.   Regardless of degree of scratching the sores seem to have a life span of a month or so, during which time white bits  come out along with sticky weepy liquid and blood, then they fade to rough reddened  lumps, then to flat hyperpigmented areas. These have yet to fade.  
 
A diagnosis is important, in case it's something else that will get worse if not dealt with.
 
Sue

[squirmingitch]

Okay. Why don't you start with this then. Go get the test for the celiac genes. And get the Iga test. Have you ever thought about Dapsone? Are you allergic to sulfa drugs? Sometimes docs will dx based on response to Dapsone however I urge you to research Dapsone thoroughly before you decide to take it. 

[whitmore]

Okay. Why don't you start with this then. Go get the test for the celiac genes. And get the Iga test. Have you ever thought about Dapsone? Are you allergic to sulfa drugs? Sometimes docs will dx based on response to Dapsone however I urge you to research Dapsone thoroughly before you decide to take it. 

Thanks squirmingitch. Will see the derm. on Friday and ask for the Iga deficiency test and a trial of Dapsone, though doubt he'll be receptive to the latter.

 

Wanted to test my theory that this is DH caused by the iodine in the thyroid medications--the rash came up when I started the meds in March--so I put a couple of drops of Lugols iodine on my calf and covered it with a Bandaid. There seemed to be no reaction after 12 hours or so, but this am(about 30 hours later) when I touched the area(flat, no visible blistering), the top skin rubbed off and it's weepy underneath. Of course, I've no idea if this would happen to anyone, or whether this is a clue.  Can't find anything really out on the net and not sure whether to mention it to the derm., who I suspect is starting to think I'm just a neurotic.  If anyone has tried this themselves and had some kind of reaction, would love to hear from them.

 

Regards.

 

Sue

[squirmingitch]

I read up on that a lot in the beginning & came up with more info. that said the iodine on the skin covered with a bandaid is bunk as to determining dh. There are things out there saying it will tell you but I found much more info. denying that than for that. Not everything on the internet is true. We have to keep perspective. Just IMHO. And if you mention it to the derm you will most likely lose credibility with said derm. My advice would be to keep that one under your hat.

 

I'm going to begin this with a disclaimer. I am not a doctor nor do I work in the medical field. The following is a thought & a thought only but my hubs is hypothyroid & when he was dx'd we did a lot of research on that subject & the medication for it. What we found said that you could go off the med for 2 months w/o really affecting your thyroid function.

When we figured out my hubs had dh also; he immediately quit his synthroid & his dh improved. He went a couple months & then began back on the synthroid & almost immediately the dh got rabid so then he stopped the synthroid again ~~~ it took 10 days before the flare had died down so he stayed off the synthroid again for a month & then tested it again ~~~ same thing ~~~ a huge flare in the dh. I'm just telling of my hubs experiences.

[whitmore]

I read up on that a lot in the beginning & came up with more info. that said the iodine on the skin covered with a bandaid is bunk as to determining dh. There are things out there saying it will tell you but I found much more info. denying that than for that. Not everything on the internet is true. We have to keep perspective. Just IMHO. And if you mention it to the derm you will most likely lose credibility with said derm. My advice would be to keep that one under your hat.

 

I'm going to begin this with a disclaimer. I am not a doctor nor do I work in the medical field. The following is a thought & a thought only but my hubs is hypothyroid & when he was dx'd we did a lot of research on that subject & the medication for it. What we found said that you could go off the med for 2 months w/o really affecting your thyroid function.

When we figured out my hubs had dh also; he immediately quit his synthroid & his dh improved. He went a couple months & then began back on the synthroid & almost immediately the dh got rabid so then he stopped the synthroid again ~~~ it took 10 days before the flare had died down so he stayed off the synthroid again for a month & then tested it again ~~~ same thing ~~~ a huge flare in the dh. I'm just telling of my hubs experiences.

So what was your conclusion, Squirmingitch? That it was indeed DH and the iodine in the thyroid med was causing it and exposing underlying Celiac? Or had your husband  already had a +ve diag. for celiac/DH?

Sue

[squirmingitch]

My hubs had been having dh but he was sailing down the river of Denial. I knew what he had but he was not willing to admit it. Finally, he could ignore it no longer & had to admit dh was what it was. And for the first several weeks he only went gluten-free but kept the synthroid & iodine. His dh did improve some but well, dh is dh & makes you insane & so that was when he decided to withdraw iodine. 

 

The signs were there for years about celiac but at that time we were not astute enough to pick up on them. We didn't even know what celiac was. He would have D for days followed by C for weeks, off & on it went with periods of "normal" (a relative word) in between. He had rashes on his legs. What brought it all to a head & exposed it was a crushingly, tremendous amount of stress along with cancer for a number of years. Then the rash became well defined as dh & presented on his feet, ankles, calves, thighs, buttocks, hands, fingers & arms with some mild ones on his back.

 

We already knew I had dh & knew how difficult it is to get an official dx. We discussed, at length, whether he wanted to try to get an official dx (he was gluten light already b/c of me) before going gluten-free. I called all the derms within any reasonable distance & they had no clue about dh & doing a biopsy for it. Since the blood panel for celiac turns up false neg. 60% of the time with dh the decision was made to forego an official dx & go gluten-free. We know what it is. And we don't need anyone's permission to go gluten-free. He had also seen how I was suffering (having it way worse than him) & wanted no part of dh worse than he was already dealing with. Neither of us have had any trouble staying on the gluten-free diet. It's gluten that scares us, not gluten-free.