DH and negative blood panel - how to progress?

[jbrum77634]

I've been mulling this around for a year or so, I wondered if I could get a few opinions from the board members here, even if you agree with my doctor.

I've just come back from the surgery with anti-histimines and a stronger steroid cream (than the pharmacy gave me which didnt work) and "no prospect of seeing a dermatologist" this side of February 2016.    I currently have the most itchy rash I've ever had in my life, all day long, scratching and bleeding.    I've attached a few pictures of the elbows which are the worst areas -  I have lesser bumps and blisters on my finger knuckles and knees although a disproportionate amount of itching around the knees.     I've reached the stage of waking at 4am and forgetting about returning to sleep.    The rash and lesions are symmetrical and as a long sufferer of the HSV-2 virus I have to say look very similar, except the itching at the moment is way worse and genital herpes clears in a week or less with acyclovir.

The final intense itching site is delightfully and conveniently at the entrance to my backside but there is no rash/blistering visible according to the lucky doctor who got to check today.  

About a year ago I had a lesser outbreak of this very itchy blistering rash confined to the elbows (final picture shown) and had the luxury of private healthcare but it still took weeks to see a dermatologist and it had all but cleared up by then - we discussed DH prompted by me and she ran a basic blood panel - negative.   

I have no gut issues I'm aware of other than the odd batch of assumed IBS.     My interest in DH and celiac disease is actually that I have idiopathic small fiber neuropathy (SFN) and I have read in many places that a lot (up to 50%) of similar diagnoses often have gluten issues as a contributing or major factor.     After 4 years of inconclusive tests and apathy I have no option but to continue to seek answers to my own problems.    

I know the anti-histamines wont work and lets say neither does the steroid cream.  How can I ever progress this for a definitive answer?   My systemic inflammation continues as does the gradual small fiber neuropathy progression.    Did anyone just move to a gluten free diet regardless?    I'd rather know it was necessary before I tried this especially as I've read it can take some considerable time (years) to control DH and any other issues.

Does DH come and go or it is a permanent condition? 

Thanks for reading.

 

 

 

[Brenda21]

I have Celiac and going Gluten Free has helped me, however I wanted to feel better than okay.  I started following a diet that is right for my blood type, which is 'O'.  This diet for the 'O' blood type states that my blood can't digest the gluten and it could take awhile for my body to rid the gluten it can not use.  I have tested other foods that the diet says my body can't use first thing in the morning before eating anything else.  I found those foods do bother me and my voice starts to break up and I have to keep clearing my throat.  I don't have the skin, hay fever or asthma issues I used to have. Eat Right for you blood type.

[hockeymomofceliacchild]

My son was diagnosed at 7 with celiac and at the time I was assured it was just eczema by my doctor and dermatologist. My brother has DH so I was certain that was the case and I pushed for more answers. His blood work was off the charts high and they immediately did a scope to prove for certain there was damage to the small intestines, meaning celiac. I have heard that people have negative blood work and still have celiac. Is there anyway you could convince your doctor to do the scope. Or in my brothers case his doctor simply did a tissue sample of his rash and confirmed that way. My son had his rash on backside, back of neck, elbows, arms etc.. My brother told me it would not go away for at least a year but some wonderful person on this forum informed me of the relationship of iodine/sodium and how it reacts to the gluten and comes out as a rash. (Sorry my medical lingo and proof is limited) I mentioned it to my brother who had a very high sodium intake at the time and thought it was interesting that my sons rash cleared much, much faster than his had, so possible truth in the information. 

My my son never had stomach issues but damage to intestines was still present. We only know if he has had trace amounts of gluten by his rash reappearing slightly then we try to figure out where and when we messed up. Other than that he is a very healthy 11 year old now who has colour in his cheeks and meat on his bones now. 

I strongly suggest if you aren't getting answers to just do the elimination of gluten diet and remove all iodine and see if it clears up. Reintroduce if you need confirmation and see if rash returns. Sometimes we just need to take our health into our own hands but hopefully your doctor is on board with a tissue culture or scope. 

I truly hope you get answers fast so you can start healing up it is very frustrating not knowing what the problem is. Take a look at your surroundings too. It's bizarre sometimes what people can be allergic too. environmental allergies can affect you this way too. I don't have celiac but years ago I discovered I was allergic to geraniums after breaking out in a head to toe rash that drove me mental. In my case however it was simple to diagnose because I worked in a greenhouse. Good luck to you! 

[squirmingitch]

Hi jbrum. I take it you are either in GB or Canada? 

When you say the "odd batch of IBS" --- please explain that statement. Do you mean it comes & goes? Infrequent? Do you associate it with anything you've eaten? Or do you figure that's just what happens sometimes as a matter of ordinary life? How many years have you had "the odd batch of IBS"? 

I've been looking up SFN and it seems it can be due to or associated with diabetes, B12 deficiency, hypothyroidism, kidney disease, among others. I am getting that from this:

Open Original Shared Link

That leads me to ask if you've recently had your B-12 levels checked? Has a full thyroid panel been run on you?

Here is a list of symptoms associated with celiac disease:

Open Original Shared Link

 

The rash in your photos certainly could be dh but you already know there are rashes that look quite similar. What is telling is the way you describe the intensity of the itching as well as the places it presents. Echoing itself on opposing sides of the body. 

When you say the dermatologist ran a basic blood panel..... do you mean a CBC?

Open Original Shared Link

Or did she say she was running a celiac blood panel? If so, do you have a copy of that? Can you get one and then post the results along with the reference ranges for us please?

I am betting the full current celiac panel was not run. Here is the complete panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

Having said that, 60% of celiacs with dh test false negative on the blood panel. We also tend to have no GI issues OR fewer, milder GI issues than celiacs without dh. That is not saying that one with dh never has the big, bad, full blown GI issues -- it's just that the majority of us dh'ers don't. And this is why I asked you about your assumed odd batch of IBS.

Okay, so that leaves us with the question of how to get to the bottom of what's going on with you. Well, the best way to find out if it's dh is to get a dh biopsy. You must be eating a full gluten diet for 3 months for the biopsy - otherwise you can get a false negative just like with the blood work. The biopsy is taken ADJACENT to an active lesion NOT on one. 

Dh can come & go at will whether you're eating gluten or not. If you quit eating gluten & are strict, very strict, then eventually the gluten antibodies under you skin will go away & you will no longer experience dh unless you get glutened. We are all different so it takes different amounts of time for us to get in the clear. If your rash is dh, then you have celiac disease and if you keep eating gluten then one day the rash will set in & not go away. In other words, it will not come & go like what you're experiencing now.

Yes, there are those of us who have figured it out for ourselves and gone gluten free without a formal dx. The frustrations of getting a doc to do the proper tests properly frequently leave us no other choice. 

For many with dh, iodine does cause flares -- it's sort of like pouring gas on a fire. This is medically known. For a low iodine diet see:

Open Original Shared Link

It is not a good idea to live on a low iodine diet but it can be helpful in tamping down the dh to adopt the low iodine diet for a couple weeks.

And lastly, what did you mean when you said "your systemic inflammation"? What other inflammations are you experiencing?

 

[jbrum77634]

Firstly thank you to everybody above for their time and input with their replies, there are some things there I didn't know about or hadn't thought about before.

Squirmingitch -

I'm in the UK and no longer with private health insurance hence it's a long wait to see a consultant for free, around 3 months for a dermatologist or £200 for a private consultation (30 mins if you're lucky) plus tests etc.

It was assumed I had IBS approximately 5 years ago, I was feeling sick, bloated/trapped wind and had cycles of diarrhea and constipation and it ticked the right boxes.  It cleared up over several months and I've rarely been troubled since thinking back.   I've just finished several months months of extended diarrhea more recently and a lot of cramping and trapped wind but this is complicated by drugs I take for SFN burning pain which I am fairly sure are the cause of the upset stomach as this has lessened as the drugs have been reduced or tapered down.

As part of investigations into neurological issues I have had a mass of blood testing plus MRI scans, nerve conduction studies, a spinal tap etc etc.   Inflammation was mentioned early on as I show unspecified white matter lesions in my brain MRI and lately I show Beau's lines on all my toe nails - these are symbolic of a systemic illness as it's all the toes nails rather than localised to one.   A skin biopsy eventually showed some regeneration of nerve fibres consisted with an inflammatory process.   I now have reduced sensation in my hands and feet and legs, painful feet, a lot of burning sensations, much less dexterity with my hands (dropping things a lot) and find talking fluently a problem - lost words, slurred speech etc.    My knees and finger joints are also starting to get sore/stiff.

The blood panel run by the dermatologist in 2014 was for Coelic but the results I received back were very brief and I quote -

"In the meantime a screen for coeliac disease, associated with dermatitis herpetiformis, has come back negative (tissue transglutaminase antibodies 1, range <10 ) and his vitamin B12 level was normal"

I may be completely off course with all of this (wishful thinking) and am of course using google to further my own investigations which generally I find doctors don't like.    However I'm a long time sufferer of the HSV-2 virus and know very well what a herpetic lesion looks like which triggered my interest in the first place.    I've also never suffered with skin problems or drug eruptions.

This second outbreak of itching and rash is much worse than the first, this time in involves my fingers (knuckles) and my knees although by far the worst area is my elbows and adjacent upper and lower arms.     The upper thighs and knees show much less lesions but the intense itching is there in a symmetrical pattern and the lesions on my fingers make themselves know when hot water hits them.

I've cut my nails this weekend to stop breaking the skin and am trying via willpower not to scratch.     I was out last night at a concert and the itching overwhelmed me for a few hours, it may have been an increased in temperature in the venue - I could sense people looking at me and thinking...errr...does this guy have a flea problem

I don't think the "moderately potent" steroid cream has had any effect although I have no prior experience and have no idea if it's meant to be a gradual calming effect or a faster acting agent?    Likewise I'm nearly through the anti histamine course and again don't really know how I would know if this is beneficial or not.    

I will be back at the doctors this week as I was told only to use the cream for 7 days and certainly the symptoms will remain beyond that - I wouldn't be surprised to be referred to a far far away dermatologist appointment but fear a repeat of October 2014 where the rash had resolved and it was a bit pointless.      I could jump the queue by paying but cant really afford anymore than the initial conversation so would then be passed back into the NHS system awaiting tests.

My frustration is the possibility of not getting an answer whilst potentially there is an insipid process gradually causing more and more damage to my system.   

 

[jgal63]

New to this forum but have been living with a kid with IBD/Celiac for 5 years. It's awful. Tested negative for dermatitis herpatiformis twice in the past couple of years. She has a TTG test (gluten levels) that has been under 20 for 2 years. DH can be exacerbated by high levels of gluten in the system and stress. But the itching and rash has been persistent no matter what. 

Finally after 4 years of begging for relief from the doctors they gave her dapsone and the itching is gone. All I can say is that medicine is not a perfect science. Find doctors that are willing to think outside of the box is a huge bonus. Just suggesting to read everything/anything you can get your hands on. And, ask questions and make suggestions.....