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knitwit

By knitwit
in Dermatitis Herpetiformis

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knitwit Newbie
knitwit
Posted

I wasn't going to post until after I have a diagnosis, but I've been reading the forums now for days and feel the need to say "hi."

 

Short story, I've had eczema my entire life (I'm over 50 now) and have basically learned to live with it.  Until a few weeks ago when I happened to google "rash on buttocks" and it led me to DH.  Add that to the odd rash on my arms (last winter) and the rash on my legs that I thought were bug bites (last summer) and it just all seemed to click.

 

I was at my GP two days later and she said I had an "uncommon" rash on my buttocks and sent me to the dermatologist for a biopsy.  I saw him two days ago, and he said "your rash looks like a common case of DH."  He did do a biopsy, so now I wait.

 

So now I wait, it's a bit odd and nerve wracking.  All the photos and my experiences tell me this is exactly what I've had all my life.  One dermatologist did test me for celiac using a blood test about 7 years ago when she said my rash looked like a celiac rash.  I was happy when it was negative.  Now I know that doesn't mean I actually was/am negative.

 

I'm feeling a bit conflicted right now, I almost rather have an actual positive diagnosis than just a wishy washy one.  

 

 

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mamaw Community Regular
mamaw
Posted

If  you  get  dx'd  with  DH  you  must  remain gluten-free  for life ----- no need  to do  any other testing! 

LauraTX Rising Star
LauraTX
Posted
Welcome to the forum!  If it comes back that is is DH, we are glad to help you transition to a gluten-free diet.  Check out the newbie thread under our coping section, so you can arm yourself with some info before a transition is needed.  Let us know! :)
knitwit Newbie
knitwit
Posted
  • Author

Thank you both.  I have been doing tons of reading on this site and others.  It's pretty much a case of knowing/accepting that this probably is DH, and wondering what the biopsy will say.  I have learned so much already, the support I see here is wonderful.

squirmingitch Veteran
squirmingitch
Posted

The huge question is...... did the derm take the biopsy from CLEAR skin ADJACENT to an active lesion? If not, then you will surely come up negative. So many derms do not know how to correctly do a biospy for dh and take the biopsy directly ON a lesion.

 

Let us know what the biopsy says. 

indianaharlegirl Newbie
indianaharlegirl
Posted

Hi I just entered this world about a month ago. You can read my first few posts. I am not diagnosed and waiting for my apt with the Celiac Center at Univ of Chicago bc none of my doctors here seem to "get it" and they wanted to give me 4 creams and said it was eczema, wouldn't do the biopsy on these huge lesions and wouldn't order the whole blood test panel. I got the impression the derm was mad bc I knew a lot about what I thought was going on and I told her I didn't agree with her and that there is no "typical DH" and I literally have ever other symptom of Celiac. I also developed a horrible rash on FEB 5 and realized I had had this rash before and thought it was from shaving my legs or bug bites. The outbreak on FEB 5 was horrible and I ended up in the ER on iv steroids just to be able to breath bc I was just so anxious and dehydrated bc I couldn't eat without feeling sick either. I researched all night and found that I had ever symptom of Celiac and had for years down to being a very colicky baby prone to skin rashes !

 

Over the past month I have found that most drs don't know more than the 5 min they spent on this in med school and bc there is no pharmaceutical company behind it funding research they will probably remain uneducated. Thankfully the Celiac Center is less than an hour from my house and I can get there. I only took the steroids for two days until the itching calmed down. I hadn't been feeling good for a good 10 years and for a year had been really exhausted sleeping 12 hours a day and still tired. Right now I am still on gluten bc I don't have a dx and know the tests will be possibly false positive if I stop the gluten.  I did stop it for a week and was starting to feel better and the rash was going away but when I went back to it it has come back but not that bad.

 

All my friends and family don't understand why I want a dx and at first I didn't think I cared either but with as bad as I feel so sick and nauseated and dehydrated even tho I am drinking bottle after bottles of water I need to know it is celiac or at least not something else. I am anemic, low potassium and Vit D and my white count is high.  I have read all the literature and if you get a positive skin biopsy I wouldn't get the endo bc DH is only present if you are celiac.......Hang in there. I have bought several books on the gluten free diet and it doesn't seem that bad and some of the food has been really good. I am a lawyer and I mention this just bc I am a trained researcher esp about medical issues bc I do personal injury and worker's comp and like you after I started looking at this rash and thinking about all my health issues I have ever had the dx of Celiac just made sense. I am struggling bc right now I am just so tired and can't focus and worried about supporting my kids but I pray God takes care of me and you too and all of us !!

 

Crystal
 

cahill Collaborator
cahill
Posted

Hi , welcome to the forums.  :) 

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knitwit Newbie
knitwit
Posted
  • Author

The biopsy came back negative for DH but shows eczema.  Whatever....

 

I eat low-carb for my blood sugar, so not much wheat/gluten in the first place.  I kind of expected it to be negative.

 

I think it's wrong though.  I have a follow up appointment later in April, and I'm just going to eat my low carb diet, keep gluten to a minimum, but not panic over it (since I do not have a positive diagnosis.)  It will be interesting to see how things go.

 

It's very frustrating, no one wants such a horrible diagnois, but we all want answers.

 

Thanks for the support, I'll probably be "fading" away at this point.

ravenwoodglass Mentor
ravenwoodglass
Posted

You might want to try being gluten free for at least a couple months rather than gluten light. If your rash is DH gluten light will not help as the antibodies will stay active. False negative are quite possible in testing for DH and you can't go by 7 year old negative tests to conclude that you are not celiac. 

You could consider going back on a regular gluten diet for 3 or 4 months and having the celiac panel done again but if you main issue is skin related you could still get a false negative. 

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      Awaiting dermatitis herpetiformis confirmation following biopsy

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      Awaiting dermatitis herpetiformis confirmation following biopsy

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      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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