Could My 'herpes' Be Dermatitis Herpetiformis?

[blackbetty]

I'm totally new to this forum and the 'world of celiac'. My head is trying to make sense of a lot of things but at the same time, a lot of unexplained things are now beginning to make sense. I haven't been tested yet so I don't want to jump to any conclusions but it really does all seem to fit. 

I've always had 'stomach issues' but from about 13 years old, my digestion became a serious issue- intense painful cramps that would leave me in cold sweats, almost passing out, extreme boating and very irregular bowel movements (constipation and diarrhoea). I was diagnosed with IBS and I struggled on. Then when I was about 27 it peaked again and after little help from my doctor I went to a private nutritionist (I'm in the UK) who recommended a gut healing diet for 3 months. This was a 'clean diet' with no processed foods and therefore next to no gluten. My diet had previously been extremely high in gluten. This diet changed my world. I felt I was cured. We then reintroduced each food group to see if I was intolerant and I came to the conclusion I was intolerant to dairy and cut that out (mostly) ever since. My stomach was far from perfect but improved greatly on before, I continued to have some issues but just dismissed this as a sensitive stomach and since it was such an improvement, it never bothered me that much. I never went back to eating the same level of gluten as before and moved to more wholegrain types.

2 years ago, I became more interested in nutrition (and became very fit) I started first of all by increasing my protein and then began eliminating processed foods. Again, this left me with an almost gluten free diet- I only ate rye about once a week. I stuck to this for about a year and felt great. I did have 'cheat meals' on special occasions (invariably included gluten) which left me very ill- usually waking up with intense cramps and sweating during the night and then being violently sick. I thought that by eliminating processed foods, I'd made my system over sensitive. I lost a lot of weight and was becoming a bit underweight so with getting a bit skinny and the over reaction to cheat meals, I decided to reintroduce some 'normal' food again and try be more balanced. That was about Feb this year. 

In March this year I became really sick, I had an inflamed muscle in my neck, fever, confusion, lethargy, sore throat and some blisters on my face. The doc thought I had a nasty upper respiratory infection and I got some antibiotics and a few weeks later, I was ok-ish. I was still REALLY tired and the blisters on my face were still there but I was well enough to carry on working. I've had an increase in GI issues- severe bloating, wind and very painful cramping when moving bowels but no pattern to the problems and not an every day thing. My main complaint has been the blisters on my face- they are tiny but really painful. They last a couple of days and just pop up around my nose and chin. I've been to my doctor countless times and they've had me on 5 courses of antibiotics (thinking it could be impetigo) and 4 courses of acyclivor (thinking it was herpes). 

Last week I got really sick again- fever, achy, confusion and extreme fatigue plus a worsening of my blisters. I went to the doctor and they decided to give me the antibiotics and antivirals all together. As I was leaving she asked if I'd ever been tested for celiacs. I told her I hadn't and was a bit confused- I had face blisters, wasn't that a stomach thing? She said once I'm feeling a bit better to come on for some blood tests. 

I've since been looking into celiacs and it's like OH!! Has this been my problem ALL ALONG?!! 

I've read I need to keep to a diet including gluten so I can be properly tested. I am a little anxious about how bad I might feel over the coming weeks/months. But I do feel optimistic that there may be an explanation for how I've been feeling and that I can hopefully resolve it by controlling my diet. 

Has anyone else had experiences where dermatitis herpetiformis has been on their face? I'm worried about it getting worse while I continue to eat gluten but I haven't found anything that helps with the symptoms. Any suggestions for how I can cope with the blisters until I can eliminate gluten?

[beth01]

Welcome to the forum and I'm sorry to hear about all the health troubles you've had to deal with, it's no fun.

If you have been eating gluten, go in and get your blood tests done now. Keep eating gluten though until and if you need to decide to have an endoscopy done.

I generally didn't have very good luck trying to manage my cold sores when I would get them. I found it was best to just leave them alone. If they got really painful, I would ice them. It seemed like if I used something like Abreva, they would get bigger than if I just left them alone.

If gluten is your problem, you will definitely notice when you eliminate it 100%. It makes a difference.

[greytmom]

I read somewhere that they can biopsy the skin right next to the breakout and determine if it is DH.

[blackbetty]

The sores are all around my face so I'm less keen for a biopsy due to potential scaring. But to be honest I doubt I'd get that far going by my doctor appointment this morning. I saw another doctor from last week and the doc today said he doesn't think it's anything like celiacs because it usually affects the skin on the elbows. He said the only skin condition on the face attributed to celiacs would be an iron deficiency that would cause sores at the corners of my mouth. He then suggested HIV testing but then said I didn't really 'fit the profile' so would hold off on that for now!!! I freaked out a bit when he said that but now I've calmed down, I really don't think I have HIV. I've been quite run down lately and he said he's thinking of things that would affect my overall immune system function- he said celiacs wouldn't do that. 

He's planned blood tests for me for Friday but I don't think it's to test for Celiac, I think it's just more routine screening. 

I'm so frustrated and don't know what to think. He prescribed more antibiotics but I've decided not to take them as it'll be the 6th in 7 months and I'm scared I'll have no healthy bacteria left! 

I just feel so confused by all this. 

[nvsmom]

Greytmom has it right.  The DH test is a biopsy right next to the sore / rash but I'm not sure if I would jump to have it done on my face either.

 

Those with DH often have positive blood tests for celiac disease so if you can get the doctor to add on more tests, it could be worth the hassle.

 

These are the celiac disease blood tests:

tTG IgA and tTG IgG (tTG is tissue transglutaminase)

DGP IgA and DGP IgG (DGP is deaminated gliadin peptides)

EMA IgA (EMA is endomisial antibodies)

total serum IgA - a control test (5% of celiacs are deficient in IgA which causes false negative tests)

AGA IgA and AGA IgG (AGA ia antigliadin antibodies) - older and less reliable tests

 

You need to be eating gluten in the weeks prior to testing or they may be inaccurate.  Don't go gluten-free yet.

 

Hypothyroidism can cause some skin issues and run you down as well.  You might want to check your TSH, free T3 and free T4.

 

7 months on antibiotics is a long time when they aren't even sure you need them.    I hope you find some answers soon. Best wishes.

[bartfull]

DH itches like crazy. What you have might be psoriasis. There are several different types. And a lot of filks with psoriasis (myself and my Mom included) saw out psoriasis clear up after going gluten-free.

[blackbetty]

My lesions are unbelievably itchy! The closest way I can describe the feeling is like there are tiny beasties eating my skin. I just want to claw my skin of sometimes but it's also very painful so I tend to just 'tap' around it which kind helps a bit. I also find washing my face temporarily reduces the itching/tingling. I think I've only coped these past 7 months by believing it will soon go away and they do only last a day or two, it's just that as soon as they go, another cluster pops up somewhere else on my face.  

 

I may just pester my doctor and ask for the tests (I have been eating gluten).  Thank you for the info about what tests I need to get. I find it quite difficult to be authoritative with the doctor but I get the feeling I need to go in with some specific info and just ask for it to be done. 

[beth01]

I have to say, pester your doctor for the tests. If he is looking for something that affects your whole immune system and doesn't think that Celiac does that, you just might want to get a new doctor to pest for that celiac test. If this disease doesn't affect the whole immune system, I'm a monkey's uncle.

[SMRI]

I was going to say the same thing as Beth.  Celiac is an autoimmune disorder, of course it affects your immune system.  What is your Dr's specialty?  It doesn't sound like he is very familiar with Celiac.  DH commonly affects knees and elbows but it can happen anywhere!  One of my biggest symptoms was being tired all the time.  That has gotten much better going off gluten.  Get tested!

[MitziG]

Your doctor, like most, is woefully uninformed. Celiac IS an auto-immune disorder and a very common symptom is exhaustion and seemingly weakened immunity. (your immunity isn't necessarily weak, it is just that your immune system has invested all of it's resources into attacking your intestines...)

DH can occur ANYWHERE, I had it all over my legs for example, thought I was being eaten by phantom fleas. The "itching so bad I almost claw my skin off" symptom is a pretty good indicator of DH.

I know you don't want a biopsy on your face, but blood tests are still a bit iffy about catching everyone with celiac disease, and without positive blood work, your doctor will probably refuse to refer you for an intestinal biopsy. I'm not sure how large of an area of skin they would need, but it may be tiny enough to not leave a noticeable scar, and it would give you a definite answer as to if your rash was caused by gluten.

If this Dr won't work with you, then find another one that will. Too many of us let our Dr dismiss us for years and suffered needlessly for it. I hope you get some answers!

[squirmingitch]

Hi there Betty! Welcome to the forum. 

You need to go back to the lady doc who asked if you had ever been tested for celiac. She has a clue! 

nvsmom might have made a typo above. Celiacs with dh often test negative for celiac on the blood tests. 60% of the time! It's worth getting the blood test though because you might be one of the 40% who DO test positive. Those of us with dh also tend to test negative on the endoscopic biopsy. Our damage to the villi tends to be patchier. The antibodies are concentrated under our skin which is what results in the celiac rash (dh). The very best way for a celiac with dh to get an official dx is to have a dh biopsy done by a dermatologist who knows what they are doing. The biopsy is taken on clear skin adjacent to an active lesion. You must be eating a full gluten diet just like with the blood test & endoscopy. The biopsy gets a special staining & at the lab they look for a particular pattern. The patterning is easily destroyed by scratching.

You can't have been on oral or topical steroids for 2 months or the results will be false negative.

 

Is the itching worse at night? Does the itching wake you up at night? Or does it keep you awake most of the night? DH is notorious for this. It can also be intensely painful and have a stinging or burning feeling. Dh often mirrors itself on opposite sides of the body. I am so sick of hearing where doctors say dh only occurs on the elbows or it occurs on the knees, buttocks & elbows & if you don't have it there, you don't have dh!!!! I think I will scream the next time I hear that! What rot!!!!!!! DH can present anywhere on the body ~~~ anywhere! 

 

Yes, there is something you can do to possibly help & this will also give a good indication of if it's dh. Go low iodine. Iodine is known to make the rash flare or worsen the rash.  You can try going low iodine for a couple of weeks & see if you get any relief. Here is a guide for the low iodine diet.
Open Original Shared Link

If you improve on the low iodine diet that's a huge clue to if you have dh or not.

 

Ice packs can help with the insane itching & burning. 

 

Go to the dh forum:

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

and read. Read thread after thread after thread. Look at the dh photobank. Tedious but worth the time invested to learn all you can about dh. There are threads on help for the itching/burning/stinging pain of dh. 

 

The dh biopsy is small & does not go very deep. Ask the dermatologist about scarring. I am sure there will be some initial scarring but it should heal in time & not leave anything permanent. I know there is one stitch usually needed.