Can Celiac Reaction Change From Diarrhea/bloating, To Dh?

[CeliacthatsMe]

Wondering if anyone else has had this experience.  First, please don't judge me or lecture me on the whole 100% gluten-free Diet.  I know, I know, I get it..

I was diagnosed 18 yrs ago with Celiac.  Had the whole severe diarrhea, bloating, etc.  I turned gluten free but must say, after about 10 yrs, and my sensitivity level was very low with little to no reaction - I fell off the wagon a few times with small amounts of gluten or not knowing 100% if it was gluten free.  I'd say I am Gluten Free 98% of the time.  When I got pregnant 9 yrs ago, I developed an irritation/itch on my hands I was told was eczema.  Been dealing with that for 9 years with steroid creams.  Recently, within the last 2 months, I've developed an irritation that has spread all over my body.  Started on my legs by my knee, moved up my leg, back of the legs, buttocks, now on my upper arms. feels like tiny goosebumps   But itchy like crazy to where I can not help but scratch, thus breaking open the skin and causing bleeding. Went to the doctor who is running a few blood tests due to him thinking it's an autoimmune disorder/disease.  (Should get the results back on Monday (today is Saturday).   Wondering if celiac can change it's reaction from diarrhea bloating to DH.  I'm concerned with that is what this irritation/rash is, that I just need to be very diligent and 100% gluten-free at no costs!

 

Sorry for the long post, wondering if anyone else has been diagnosed, not adhered to the diet 100% as I (we try but sometimes we slip) and then develops DH.  And, is a skin biopsy the ONLY way to diagnose this?

 

Thank you!  
Janet

[squirmingitch]

Since I have been on this site I have read numerous posts from celiacs who had been gluten-free for years & then get accidentally glutened & they  do NOT get the GI issues but instead get dh. So to answer your question --- YES! It can go from GI issues to dh. I fear that is what has happened to you. You don't need a biopsy --- you already have a dx of celiac disease so there's no real point in getting a dx of dh. And yes, a skin biopsy is the ONLY way to dx dh unless your doc is savvy enough (I doubt it) to realize the connection & dx on appearance & response to 100% strict gluten-free diet. BTW, the use of the steroid creams will make a dh biopsy negative.

I'm very afraid that what you have done is "given" yourself dh. I believe that is exactly what you have. You really, really need to get serious NOW, not tomorrow, but NOW! And I'm not yelling at you but trying to help you understand what will happen if you don't get vigilant. It may happen anyway b/c the antibodies are already under your skin & woe be unto you if you begin getting blisters. I sincerely hope you don't. I really do. It can take 2 years & more for the antibodies to get out of your skin & meanwhile you can have dh flares or dh running straight through. DH is a TOTAL BITCH! Oh, & those steroids creams you've been using? The minute you stop them dh hits you with a VENGEANCE! The steroid creams thin your skin among other things & I can't believe a doctor would have you continually on them for 9 years. You need to get a new doc.

The pregnancy can trigger the dh rash & I suspect that's when the antibodies began piling up in your skin. I'm so sorry hon but I fear the bumps you experience now are just the tip of the iceberg for you Janet. 

[CeliacthatsMe]

Since I have been on this site I have read numerous posts from celiacs who had been gluten-free for years & then get accidentally glutened & they  do NOT get the GI issues but instead get dh. So to answer your question --- YES! It can go from GI issues to dh. I fear that is what has happened to you. You don't need a biopsy --- you already have a dx of celiac disease so there's no real point in getting a dx of dh. And yes, a skin biopsy is the ONLY way to dx dh unless your doc is savvy enough (I doubt it) to realize the connection & dx on appearance & response to 100% strict gluten-free diet. BTW, the use of the steroid creams will make a dh biopsy negative.

I'm very afraid that what you have done is "given" yourself dh. I believe that is exactly what you have. You really, really need to get serious NOW, not tomorrow, but NOW! And I'm not yelling at you but trying to help you understand what will happen if you don't get vigilant. It may happen anyway b/c the antibodies are already under your skin & woe be unto you if you begin getting blisters. I sincerely hope you don't. I really do. It can take 2 years & more for the antibodies to get out of your skin & meanwhile you can have dh flares or dh running straight through. DH is a TOTAL BITCH! Oh, & those steroids creams you've been using? The minute you stop them dh hits you with a VENGEANCE! The steroid creams thin your skin among other things & I can't believe a doctor would have you continually on them for 9 years. You need to get a new doc.

The pregnancy can trigger the dh rash & I suspect that's when the antibodies began piling up in your skin. I'm so sorry hon but I fear the bumps you experience now are just the tip of the iceberg for you Janet. 

Thanks squirmingitch.  Just to clarify, no I haven't been on the creams for 9 yrs. straight.  Just on and off when the eczema flare ups happened on my hands. Thank you.  When I was diagnosed, there wasn't much info on the disease, and now I'm glad that more and more info is coming out.  So, there is a chance of correcting it by just going 100% gluten free?  What is it that I need to make sure my doctor is aware of?  Is there any medications that can be taken to help remove the appearance?  

 

Thanks.  

Janet

[pricklypear1971]

Of it is DH, Dapsone may help reduce the rash in combination with a gluten-free diet. Bit it's wicked stuff...you'll need monitoring.

A good number of DH sufferers are iodine sensitive. I was successful at keeping my DH "down" by going gluten-free and low iodine (thyca.org diet) for 2 weeks - then adding iodine back slowly. Took about 2-3 months to be able to eat high iodine foods in abundance.

Iodine doesn't cause DH but it can trigger it.

[CeliacthatsMe]

Of it is DH, Dapsone may help reduce the rash in combination with a gluten-free diet. Bit it's wicked stuff...you'll need monitoring.

A good number of DH sufferers are iodine sensitive. I was successful at keeping my DH "down" by going gluten-free and low iodine (thyca.org diet) for 2 weeks - then adding iodine back slowly. Took about 2-3 months to be able to eat high iodine foods in abundance.

Iodine doesn't cause DH but it can trigger it.

Thanks.  My bloodtests came back that the doctor was running for other autoimmune disorders/diseases and it cam back negative.  So, I guess that's positive as it's not a lupus or another serious condition on top of Celiac.  I'm going with it's a form of DH.  Iodine - is that mainly salt?  I will have to google it to see what it's in.  8-)  I'm on predisone right now and it's helping clear it up.  Thanks for your feedback.  Really appreciate the positives and not negatives.  When we are at this stage, we're very sensitive as to what things can be so it helps to hear positive approaches to this and not so much negatives.  8-)

[pricklypear1971]

Thanks. My bloodtests came back that the doctor was running for other autoimmune disorders/diseases and it cam back negative. So, I guess that's positive as it's not a lupus or another serious condition on top of Celiac. I'm going with it's a form of DH. Iodine - is that mainly salt? I will have to google it to see what it's in. 8-) I'm on predisone right now and it's helping clear it up. Thanks for your feedback. Really appreciate the positives and not negatives. When we are at this stage, we're very sensitive as to what things can be so it helps to hear positive approaches to this and not so much negatives. 8-)

Well, sorry to bring on the negatives, then...

1) corticosteroids are contradictory to autoimmune testing. Steroids are used to put AI disease into remission....so if you were on them during ANY testing you may get false negatives. Hopefully your testing was done prior.

2) if it is DH, steroids can put it into remission; however, everyone I've talked to (even my dermatologist) says the rash will must likely come roaring back once steroids are withdrawn. That's what happened to me- and the rash was meaner than before steroids.

3) before you withdraw steroids, start withdrawing iodine - may be your best hope to avoid a flare and dapsone if it is DH. Use the thyca.org diet guidelines. If you get off prednisone, are low iodine...test your reaction by eating ONE high iodine food - one egg, a serving of asparagus, etc. and wait up to 48 hours. If the rash escalates - it's probably DH.

My DH is very iodine sensitive. It is crystal clear if you know what to look for.

[sisterlynr]

There is a topical form of Dapsone.  I had a severe breakout on my hands in 2010 but my doctor had no clue what the rash was, at that time.  

 

The breakout that started Feb of 2012 is still with me.  I take Dapsone and am gluten and iodine free but missed knowing some foods were high in iodine.  

[utahraptor]

I'm having this experience at the moment, annoyingly. I've been gluten free for a few years after stomach problems and I think I was doing pretty well. However, I'm on a 6-month student exchange now in Asia where it's next to impossible to avoid cross-contamination. Because of this, I've been a bit casual about the whole thing. There's not much else to do really. Sadly, this has made me break out in itchy rashes on my hands, elbows, back, and legs. I didn't realise I could suddenly get DH. I'm too far away from my doctor to get an official opinion (he's a bit rubbish anyway), but the symptoms seem to match perfectly. Also, being in Asia means rice every day usually twice a day, so maybe the iodine thing is kicking in too? Home in two weeks where I can cook for myself, but until then I'm just hammering on cream and taking antihistamines. Not sure what else to do really.

 

This forum's been amazingly helpful, by the way. For a long time, before it spread, I assumed it was bug bites! So, thanks! 

[squirmingitch]

The rice shouldn't be an issue iodine wise raptor. Not unless there's a whole heck of a lot of iodine in the soil where the rice is grown. Rice would be at the bottom of the iodine list. Maybe the salt?

Sorry you're getting cc'd & do you really need a doc to tell you what it is? don't waste your time. I hope it all resolves quickly when you get home.