DH? Long and sad

[KD-]

Wanted to thank you all here at the forum for your messages, in the course of past two years it has been of much help and encouragement for me to read it and to know that I'm not alone in what I have been going through. I'd like to share my story in case somebody would get any benefit from reading it and in case there is anybody who can suggest something... 

 

I got first problems in 2009 when my fingertips started cracking all the time - deep cracks, bleeding, painful, etc. a continuous vicious circle. I just lived with it, it was manageable. I saw a few doctors, they said it was dishydrosis and that was it. In 2012 or so I got first eczema on my right hand little finger that then went on to grow and spread steadily during the following years and ended up to cover my entire right hand palm and moved on to my left hand little finger.

 

At the end of 2015 I experienced first major problems that forced me to go on a strict diet (I saw an article in the internet that explained such eczemas by candida overgrowth). I stayed on that candida diet for something like two months and got a complete relief from all symptoms. The symptoms were overall fatigue, skin peeling off on my forehead, further growth of eczema on my hand, terrible itch and pain becuse of the eczema (I remember dropping on the floor in tears because of the agonising pain), and the last drop was hair loss...

 

That diet helped and I now knew that my problem could be managed. I started reading stuff online trying to figure the connection and what was actually wrong with me. I did some lab tests, I did not have candida, I actually did not have any problems, all lab tests came back clear. I spent 2016 staying on diet on and off, balancing between flareups. I gradually started getting bloating episodes that lasted up to a week with certain discomfort breathing, walking, etc. Through experiments I figured that certain products made me feel worse and made the eczema worse. First was gluten. Avoiding gluten really helped. I could eat gluten one-two times but after several times I had a full flare up (no noticeable stomach problems though), so I started cutting down on gluten. Then soya joined the blacklisted gluten.

 

And then came the spring of 2017 that I will never forget. I am attaching three photos to show what my hand was like. I could hardly use my hand, it would swell, burn, itch, pain. I started getting spots of eczema all over the my hand, spreading on to my left hand and it got really out of control spreading too fast. I tried going to doctors again, tried taking their medicines, all to no avail. Returning to diet and finally cutting out lactose removed the agony within two weeks.

 

So,  here I am now - intolerant to gluten, soya, nuts, any forms of sugar (including fruits), lactose. On top of that I am vegetarian (well, now a forced vegan).

 

The reason why I am writing here is although I am strict with gluten I still get some (milder) flareups that are caused by even smallest amount of anything that's off the "diet" things. I can get a some flareup by cleaning some dusty drawers, by sleeping on a bed with dusty floor undernearth, by using spice mix that obviously has something wrong mixed in it, well and of course by eating something wrong when I get weak (and stupid).... Just to give you an idea, when I go to a store I cannot buy any snack at all that would be safe for me. All food that I take has to come from my kitchen and my pots... 

 

I have stuck to absolute diet for 3 months but within a week after I started adding some food like fruits or nuts to see if I was still intolerant to it, but I again get back to having problems... I have tried getting tested for allergy (nothing), for stomach problems (nothing), ultrasounds (nothing), blood test for clieac (nothing). Doctors here do not know the cause and do not get concerned also (the doctors just say oh if you feel you cannot take certain foods, then don't take them - duh, but when the list of those tihngs is that long?). Stomach biopsy is not done in my country (unless the patient is dying I guess). The only medicine that I take that helps me is an absorbent that is supposed to take out allergens out of the guts and is taken during poisoning (someting similar to activated charcoal). I took antihistamines almost every day in spring 2017 and I ended up always getting too drowsy for one-two days (even from the non-drowsy ones), so I have stopped taking them. 

 

The reason why I am writing all this and why I'm happy you have read till the end is that I feel disheartened and it is very hard for me to actually come to terms with this kind of diet especially because all lab tests come out clear and objectively there is no proof that I do have any allergies or intolerances or stomach problems. I'd appreciate to hear you take to it and perhaps some advice...

[Barbie Wickham]

Hi KD,  I am just recently diagnosed with DH, Celiac Disease... I feel for you and what you are going through. I know all too well the pain & frustration. I also have hundreds of photos I’ve taken of my hands, elbows, knees & buttocks. I am by no means a Dr., but your photos look very much like a good friend of mine who suffers from several types of Psoriasis.  Hers started on her hands with the drying and cracking, big deep painful crevices, leading to bleeding and constant pain. Just thought I’d mention this to you and see if you have researched any of the different types of psoriasis and the biologics used to treat them? Best of luck to you in finding your way. 

[Ennis-TX]

Celiac disease test are going to give a negative result on a gluten free diet. To take the test you HAVE to be eating gluten daily for 12 weeks for the blood test. Due to the pain and agony we call it a Gluten Challenge. Then you have keep eating it for the endoscope and biopsy. If you have DH then then take a biopsy from a clear spot next to a lesion, I honestly know nothing of DH since it is not one of my symptoms. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

What I can tell you is I have a similar gut issues, Gluten huge no, allergic to corn ,soy and dairy intolerant, allergic to peanuts, few other fun oddities, and due to Ulcerative Colitis I can not eat Fruits, sugars, carbs. And I think I might have a some kind Enzyme issues not diagnosed but I can not eat meats other then fish and crab and then only in the tiniest amounts. I also have to take a ton of digestive enzymes to break down my food. Egg yolks are a no but I can live on egg whites, most tree nuts low in carbs high in fats, and leafy green veggies.

[KD-]

On 14.11.2017 at 2:21 AM, Barbie Wickham said:

Hi KD,  I am just recently diagnosed with DH, Celiac Disease... I feel for you and what you are going through. I know all too well the pain & frustration. I also have hundreds of photos I’ve taken of my hands, elbows, knees & buttocks. I am by no means a Dr., but your photos look very much like a good friend of mine who suffers from several types of Psoriasis.  Hers started on her hands with the drying and cracking, big deep painful crevices, leading to bleeding and constant pain. Just thought I’d mention this to you and see if you have researched any of the different types of psoriasis and the biologics used to treat them? Best of luck to you in finding your way. 

Thanks, I've looked up prosiasis and does sound to make some sense although the implied relief still comes down to the same gluten-free, lactose-free, other-things-free diet...  Has your friend ever get any relief? I read online that psoriasis is generally diagnosed by its external appearance by a doctor but none of the dermatologists I have seen ever mentioned psoriasis, it's always been eczema or dermatitis... I would be scared to self diagnose myself. In any case, whatever name you call it (and honestly I'd prefer to say, "Sorry, I can't have your cake, I am intolerant to gluten," than, "Sorry, I can't have your cake, I have psoriasis!" :))) the problem is still same - too many things that I have to cut out... Thanks a lot for the note though, I will read about psoriasis more.

[KD-]

On 14.11.2017 at 3:27 AM, Ennis_TX said:

Celiac disease test are going to give a negative result on a gluten free diet. To take the test you HAVE to be eating gluten daily for 12 weeks for the blood test. Due to the pain and agony we call it a Gluten Challenge. Then you have keep eating it for the endoscope and biopsy. If you have DH then then take a biopsy from a clear spot next to a lesion, I honestly know nothing of DH since it is not one of my symptoms. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

What I can tell you is I have a similar gut issues, Gluten huge no, allergic to corn ,soy and dairy intolerant, allergic to peanuts, few other fun oddities, and due to Ulcerative Colitis I can not eat Fruits, sugars, carbs. And I think I might have a some kind Enzyme issues not diagnosed but I can not eat meats other then fish and crab and then only in the tiniest amounts. I also have to take a ton of digestive enzymes to break down my food. Egg yolks are a no but I can live on egg whites, most tree nuts low in carbs high in fats, and leafy green veggies.

I was eating some gluten back then when was doing blood tests for celiac. A derm did take a patch of skin from hand to test it for yeast infection (not sure if that's what skin biopsy actually is, probably not). All is clear. Sorry to hear you're also struggling with diet :(( It really sucks to realise that everybody around is having a ball when you cannot have even something as simple as a banana without having to battle the consequences...

[Whitepaw]

Did a dermatologist AND  an allergist do allergy testing?  Derm tests for specific skin allergies. If your skin is coming in contact with substances that you are allergic to, you can get reactions that get the catch-all eczema label.   Same goes for allergies to dust, etc.  that you may come in contact with. 

Years ago I would get deep itchy red areas that would surface; my skin would peel off until it was painful to touch anything.  Best diagnosis I could get was dishidrosis. It tended to be mostly on the palm side of my hand.  At some point allergy testing revealed an allergy to dust and mold, but avoiding these did not stop these episodes. Many years later I went to a good dermatologist who did skin allergy testing. After finding out I'm allergic to many fragrances and to nickel, I simply avoided these or wore gloves, and had no further flare ups.

I recently went thru what I feared was DH. I had a rash with blisters that itched and burned. I had inadvertently used a hair product containing wheat protein, however it turned out to be the fragrance or dye in a dish soap I'd been using for a couple years.  Perhaps they changed ingredients, who knows.  After some light treatments, wearing gloves, and switching to a fragrance and dye free soap, my skin cleared up.

[jaccah]

For me, the DH rash was what lead my Dr. to have me tested for celiac.  Since I have IBS, I was thinking that was what was causing my stomach issues- and I was so bloated that I looked pregnant.  It is still my DH that lets me know, I have somehow encountered gluten/cross contamination.  My skin will start burning and itching within an hour of consuming gluten. And if I don't take an antihistamine ( which helps, but does not entirely get rid of it) then I am in big trouble with the blistering etc.  The stomach issues don't occur until 8-12 hours later.  One thing I wanted to mention- you do NOT have to keep eating gluten for the endoscope/biopsy to show celiac.

[cyclinglady]

6 hours ago, jaccah said:

For me, the DH rash was what lead my Dr. to have me tested for celiac.  Since I have IBS, I was thinking that was what was causing my stomach issues- and I was so bloated that I looked pregnant.  It is still my DH that lets me know, I have somehow encountered gluten/cross contamination.  My skin will start burning and itching within an hour of consuming gluten. And if I don't take an antihistamine ( which helps, but does not entirely get rid of it) then I am in big trouble with the blistering etc.  The stomach issues don't occur until 8-12 hours later.  One thing I wanted to mention- you do NOT have to keep eating gluten for the endoscope/biopsy to show celiac.

Welcome!  While it may be true for you (your biopsies may have revealed damage while you had been gluten free), researchers recommend a gluten diet for all celiac tests.  Amounts and times may vary.    Why because experts really do not know how each individual reacts to gluten.  A person can heal in as little as two weeks or damage can last for months to years (for a variety of reasons,like refractory celiac disease or a hidden gluten sources).

To insure the best diagnostic outcome, it is best to be prudent and be on a gluten diet.  ?

I am glad that you are doing well.  Nice to know that antihistamines can help reduce some symptoms of DH.  I do not have DH, but I do deal with chronic autoimmune hives.  Thank goodness for antihistamines!  

Please continue to share your DH tips.  We do not have as many members who have DH and we could use your expertise.  

Edited November 21, 2017 by cyclinglady

[artistsl]

I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though. 

I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?

[KD-]

On 11/23/2017 at 12:42 AM, artistsl said:

I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though. 

I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?

Yes, I do not take iodine salt as well (forgot to add it), I get bubbles after it... That actually worries me a little because in long run what is my thyroid going to say (I do not eat seafood so there is no source of iodine for me at all)? I tried taking iodine supplement but got bad reaction to it. I am taking DEVA multivitamin supplement now (that's vegan, gluten, dairy etc free) and this seems to cause no reaction (it does contain some iodine, so that's covered now) and the hand seems to heal quicker and better now. It does not prevent bubbles or flare ups from appearing, but the skin does seem to recover quicker (I don't know if it's the strict diet without deviation or the vitamins really). I'm taking it with digestive enzymes (also for vegans, and all-sorts-of-things-free) to make sure the vitamins are digested.

I also get some neurological reaction to gluten and the other bunch of allergens - recently I ate chips (the package did not say it contained gluten traces, I found out about it only later) and I felt very weak and unable to stand properly, legs become very shaky (I am 31, not an old lady who you'd expect to feel weak at times). Sometimes I can get severe mood swings also. After taking absorbent medication I felt relief and the next day was normal. I never ever get such weakness bouts when on diet. 

Thanks a lot for your comment and encouragement!

Edited November 25, 2017 by KD_

[PRT]

It is a systemic problem.  Drink only spring water, then change pots to PFOA free hard anondized.  Do not use stainless (it leaches), anything that you microwave use borasilicate glass.  Do not use ceramic (especially Old dishes) in the microwave (they leach). Get rid of old dishes and utensils. Use Only All Free & Clear soap, no bleach in your laundry and Ivory hand soap in the shower. Use only lukewarm water, pat dry and apply Mineral Oil.  When you feel the itch coming on, reapply water and Vaseline or mineral oil.  Shampoos are tricky, there is vanicream shampoo (husband tolerates) but not the other vanicream products. Consider that you're allergic to the gels/ointments, lotions, supplements and medicines you're given or have been using. Get rid of Fragrance. It is in food naturally and in items like Ice Cream, hand sanitizers and cleaning products.  

[KD-]

-

[Posterboy]

On 11/13/2017 at 3:09 AM, KD_ said:

So,  here I am now - intolerant to gluten, soya, nuts, any forms of sugar (including fruits), lactose. On top of that I am vegetarian (well, now a forced vegan).

KD,

You said you  were a force Vegan....

You might have developed Pellagra....it mimics DH often...

Here is an article detailing how Vegans' can be more susceptible to developing pellagra entitled...

"Recognising the return of nutritional deficiencies: a modern pellagra puzzle"

https://casereports.bmj.com/content/11/1/e227454

Here is a nice couple threads about DH that could help you too!

People who get DH are often low in stomach acid...as many as 1 in 4 celiac's can't produce any stomach acid.

https://pubmed.ncbi.nlm.nih.gov/3992162/

try taking a B-complex with meals plus the Benfotiamine (fat soluble B-1)....much better absorbed and see if your condition doesn't improve in two or three months....then you will know you also developed Pellagra along with your Celiac disease....

I had similar problems when I was first diagnosed...

Here is a posterboy blog post about this topic of how these two conditions (Beri Beri and Pellagra) often occur in the same person...who have developed/been diagnosed with Celiac disease..

I hope this is helpful but it is not medical advise.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Megan-L]

Hello, 

Like many of you I have had a long and rollercoaster ride with food allergies and celiac diseased. Diagnosed in 2013 with celiac, just last year I was tested for more allergies and for the past year have been vegan (dairy and eggs) I still eat meat, dairy, soy, nut and a few fruits and veggies free. Recently (in the last 6 months, I've been dealing with skin rashes that led me to believe I was going to have DH I noticed the flare ups with soy and gluten mostly, however more recently, if I've been exposed to gluten I don't get any stomach issues I just get the horrible rash around my elbows with large bunches of painful bumps. My dermatologist tested it and came back with no answers for me. She just said "if you haven't had gluten the rash wouldn't be there". I've gone through every stage of thinking it was psoriasis, to eczema and more. Assuming it's DH, do you guys notice flare when you've eaten to many refined or processed sugars? I have steroid cream, but are there any other home remedies you can use to get it to calm down?

 

Thanks a ton.

[cyclinglady]

3 hours ago, Megan_L said:

Hello, 

Like many of you I have had a long and rollercoaster ride with food allergies and celiac diseased. Diagnosed in 2013 with celiac, just last year I was tested for more allergies and for the past year have been vegan (dairy and eggs) I still eat meat, dairy, soy, nut and a few fruits and veggies free. Recently (in the last 6 months, I've been dealing with skin rashes that led me to believe I was going to have DH I noticed the flare ups with soy and gluten mostly, however more recently, if I've been exposed to gluten I don't get any stomach issues I just get the horrible rash around my elbows with large bunches of painful bumps. My dermatologist tested it and came back with no answers for me. She just said "if you haven't had gluten the rash wouldn't be there". I've gone through every stage of thinking it was psoriasis, to eczema and more. Assuming it's DH, do you guys notice flare when you've eaten to many refined or processed sugars? I have steroid cream, but are there any other home remedies you can use to get it to calm down?

 

Thanks a ton.

If you have been diagnosed with celiac disease, you can develop DH.  Celiac disease is like a chameleon, symptoms can come and go and you can develop new ones.  The way to avoid DH is maintain a strict gluten free diet.  It sounds like you are consuming gluten, or do you mean you must be getting gluten exposures into your diet?  
 

Those with DH must be super strict.  Try not eat out and avoid processed foods, even processed gluten free foods for a while.  Check how much iodine is your diet because it can contribute to DH flare-ups.  Read through the DH section of the forum for more tips. 
 

I would take your dermatologist’s advice and do not consume any gluten.  

[Sarahhhaha123]

Hi Kd_
 

I have had this exact symptom for 5 years. I have Histamine Intolerance and would really urge you to look into it as it has caused many chronic symptoms for me (lethargy, brain fog, dermatitis on right hand, anxiety etc).

I made an account just to send you this comment 

Good Luck

Sarah 

[KD-]

On 11/19/2020 at 4:05 AM, Sarahhhaha123 said:

Hi Kd_
 

I have had this exact symptom for 5 years. I have Histamine Intolerance and would really urge you to look into it as it has caused many chronic symptoms for me (lethargy, brain fog, dermatitis on right hand, anxiety etc).

I made an account just to send you this comment 

Good Luck

Sarah 

Sarah, thank you so much for this note. I will look into it. How did you get diagnosed with it? They did a skin prick test for histamine intolerance and it showed nothing, I'm not sure if there's another way to diagnose it. How do you live with it? I am still sticking to this awful diet with occasional breaks for fear of starting to severely lack nutrients. These days I am trying to take gluten-free oats with tahini for some nutrition, it seems to agree but border-line. 

 

[KD-]

21 minutes ago, KD_ said:

Hi Kd_
 

I have had this exact symptom for 5 years. I have Histamine Intolerance and would really urge you to look into it as it has caused many chronic symptoms for me (lethargy, brain fog, dermatitis on right hand, anxiety etc).

I made an account just to send you this comment 

Good Luck

Sarah 

 

I have looked into it - the list of prohibited food looks frighteningly similar to mine.  How do you live with it?

The eczema is now manageable and, having migrated a little, flares mostly on the outer hand and (surprise) eyelid (tiny clear bubbles, sometimes swelling, sometimes dry irritated skin). I have also become sensitive to rice now. 

Along with that, I have gone through two four-month long periods of fighting acne, where, painful as it is, the culprit has turned out to be dairy... Eliminating dairy has left my face with 100% cleared acne, the scars of the fierce battle and the nagging pain of parting with dairy (I cannot use substitutes - nuts don't agree with me, coconut milk makes me nauseous if taken in too large doses)... Hope this helps somebody out there seeking some comfort of realising that even such situation is possible in one's life...