Share early DH experiences.

[Feeneyja]

After being glutened twice over Easter Weekend (Friday and Sunday), several days in to her reaction she has developed a very itchy rash.  It started on her head, around her hairline and ears and has moved all around her body. It is worse at night, but cortisone cream seems to help. By morning it is mostly gone with some tiny red spots but new places crop up through the day-crazy itchy!.  Her head has pretty much stayed itchy. We are on day 4 of this.  It seems to be working its way across her body. 

I’m curious what others experienced as a FIRST rash?  

Disclaimer: She is not diagnosed with celiac. Blood work and biopsy were negative three years ago after a 6 week gluten challenge. The challenge wasn’t technically long enough (we went gluten-free first), and the blood work was not the full panel (just tTG).  She is incredibly sensitive to cross contamination with both GI and neurological symptoms so we are very careful. The recent glutenings were at events where she brought her own food. But there were TONS of crumbs everywhere and she is a kid and not good at keeping her hands away from her mouth. 

Anyway, I’m curious about folks with DH when they first had an outbreak.  I know (think?) you have to be on gluten for even a skin biopsy, so I’m thinking there’s no way to really diagnose DH if we go to the doctor. Her negative blood work and biopsy have put us in a place where doctors immediately dismiss gluten as a problem anyway and suggest...yes, FODMAPS.  Sigh. No, it’s not the FODMAPS. 

Thanks. 

[apprehensiveengineer]

Yeah, you should be ingesting gluten for a skin biopsy unfortunately. If possible, you might try to get one done now (with a current outbreak) on the chance that this might be sufficient to get something measurable.

I had an intestinal biopsy/endoscopy done while gluten-free on the premise that there was something wrong with me, and so there was some value in taking a look at my intestines (and if you're in there, might as well check for celiac). You might try to frame it to the doctor like that - an itchy rash is clearly something and if you're going to try to figure out what it is, you might as well do a DH biopsy of it while you're at it. It might also be worthwhile pointing out that many with DH are seronegative because their bodies produce different auto-antibodies (eTG instead of tTG). Anti-eTG is not assessed at most labs.

Rashes are tricky and difficult to diagnose because a lot of them are quite similar in presentation. What you describe does sound plausible as DH though, especially if it was associated with a gluten exposure. I have been glutened in crumb-infested/beer-coated places while not eating a couple of times (not touching your face is hard even for adults!). I know that some people have had success using disposable wipes for surfaces and hands, so that might be something you can do for school or birthdays where kid messiness will be an issue. 

[Feeneyja]

This is so maddening. She is scratching herself into large welts. It’s hard to tell what the rash even looks like, she makes it look so bad.  It is worse at night and cortisone cream helps a little, but it’s only temporary. We have been strictly gluten-free for years (don’t eat any grains or packaged foods - just a whole food diet), so I don’t expect any biopsy would show anything.  

I am still hoping if folks with DH could describe what their first outbreak was like. Is it always the big liquid filled rash? Is there a typical early rash that is less obvious but still super itchy?

I’m trying to decide if we should do the low iodine diet. I hate to limit more foods (eggs and fish are a big part of our diet).  Oh, and I did take her for a full allergy test. No food allergies. Just dust and some pollen, but nothing really bad.

[cyclinglady]

Do antihistamines help, at least with the itching?  Whealing, I itching and spreading quickly throughout the day could be autoimmune urticaria (hives) or mast cell activation syndrome which could be triggered by her recent gluten upset.  Oral antihistamines (avoid Benedryl/other first generation antihistamines) help.  Remember food allergies and other IgE testing is about 50% accurate.  

[Mamadog]

I am now 71 years old...have suffered from DH since my mid-30s...was finally diagnosed at age 49, (after going to at least 6 dermatologists through the years). One day, I was in a full body breakout...and my Primary Care Dr. referred  me to a wonderful new Columbia Medical School graduate took me into her office immediately on a Friday evening after she had closed her office for the week.  When I got there, she took one look at me and said she was pretty sure she knew what I was suffering from.. ..After so many years, I held out very little hope, but we went ahead with the 3 biopsies performed in her office. That evening, I received a lengthy call from her with a list of questions regarding my heritage, and family. Her name was Dr. Lindale Lokeys, Largo Diagnostic, Largo, FL .  Most of my heritage is Northern European, and although I lost my Mother at an early age, I remembered her scratching  bloody sores often. 

 

The following week the Doctor received the lab results from USF and they confirmed her suspicions. I had DH. Then she proceeded to give me a huge binder of info, and foods to avoid, as well as an RX for 5mg Dapsone, which I take to this day when needed. 

 

One thing to look for as you await your 1st appointment with a Dermatologist is the "look" of the blisters.  Secondly, they tend to be symmetrical, ie; if you get one on the left cheek, chances are, within a few days, you will get one on your right cheek. Although elbows and knees are the 1st areas to break out, my body is an equal rash field opportunity. ..I tend to break out everywhere.  Even inside my mouth.

 

Despite what the "authorities "say, many of us are so sensitive, there is no 100% avoidance, despite doing our 100% best to avoid trigger foods.  An example...a gluten free condiment I tried had vinegar as one ingredient. I am highly allergic to vinegar as well as alcohol. Many gluten-free products have vanilla....vanilla has alcohol.  So, unless it says "alcohol free" vanilla, I avoid it.  Thankfully, there are hundreds of products now available...but in my case, because I am so super sensitive, it is hit and miss.  

 

It is now going on 23 years since I was first diagnosed. I retired and moved 16 years ago. I now go to Dr. Jennifer Vesper, Bradenton, Fl.  Finding a good dermatologist is important.  Not everyone with DH has exactly the same sensitivity, experiences, and access to help and foods.  The dermatologist should also be willing to help you ease into your new lifestyle, answer some of your questions, and refer you to sites such as this for community support and info. The dermatologist must be willing to partner with your primary care doctor with treatments and regular blood tests. This can also become a mental health issue as there are times when a flare up causes you to become depressed and angry.  That's ok...knowing this will be a life long struggle, and that others are dealing with DH also does help.

 

And many are fortunate to go into a form of remission for months or years. .. (has never happened to me), only to have DH roar back into their lives.

 

There are thousands of diseases out there.  MS, MD, CANCERS, etc;

We just have DH.  Not our fault. Like sufferers of other diseases, it is a daily struggle. We can do this.

 

 

 

 

 

 

[Feeneyja]

Oh wow. Mast cell activation disorder sounds like it. She has had other random symptoms such as chest pain and acid relflux recently.  And yes, an antihistamine did help one night at its worst.  

Ugh. Fermented foods are one the the things we have successfully implemented for gut healing.  But they are high histamine.  

[cyclinglady]

My allergist put me on antihistamines daily (H1 and H2) because I had stomach issues.  I also reduced the amount of histamine I ingested for a week or so, but the medication helped the most.   My hives would start with ab pain, then they would start with my head itching, then my arms, abdomen and finally legs and feet, even the bottom of my feet.   Thousands of hives.  They would wheal when I scratched.  I used to have cold hives (all my life) , but that resolved on the gluten-free diet and maybe hot flashes from menopause.  Last year after a glutening (antibodies elevated for celiac disease and Hashimoto’s), severe tooth infection, a cold and the flu, I started up with the hives.  They lasted for six months.  Then I stopped the antihistamines.  A year later an endoscopy revealed healed villi, but a new problem autoimmune gastritis.  

So, not to alarm you, but a gluten exposure can be serious and trigger other issues or can compound existing ones.  Ugh!  

I only hives now with an insect bite or medications like acetaminophen or ibuprofen.  Swelling also occurs.    One bite and I get hives by the hundreds.  

My allergist has some standing lab test orders should it ever get severe again (I have passed out many times and my blood pressure drops per the very attractive firemen that come to my house and is the reason for my going to the hospital).  But really, there is not much that can be done with Mast Cell Activation Syndrome.  There are more drugs, but those have serious side effects.  Note too that there are different levels or degrees of MCAS, and mine are not severe.  

Luckily, my allergist knew about MCAS.  But like my GI, they have asked what I want for treatment.  My goal is to avoid  prescription drugs since I tend to react to them.  The side effects of pharmaceuticals can be alarming.  Drugs  that treat autoimmune disorders?  My quality of life would have to be severe.  So, I try to reduce stress and avoid gluten at all costs!  

 

[cyclinglady]

Welcome, MamaDog!  

Thank you SO much for sharing.  We need more DH members sharing their history and treatment.  

[squirmingitch]

Welcome Mamadog!

 

Feeneyja, First rash? Gosh, I think you could get 1,000 answers to that b/c we are all different & therefore react differently. My first rash, I did not know it was dh. I would get a teeny tiny blister or 2 on the back of my calf and then a day or 2 later, the same would happen on the other calf. Always they were like copies of each other. So that was my first rash that I know of in hindsight. It wasn't too long after that when I began to get great big places in my scalp - again bilateral. I don't know if they were blisters or not b/c I could not see them but they were hot, large & itched like the devil constantly. 

My first "mother of all rashes" (or at least I thought so at the time) began low, low on my back, all the way across my back & in hours had worked it's way up my entire back & then began to crawl over my shoulders onto my chest & downward it went. No blisters that time. I thought it was stress b/c we were smack in the middle of moving from one end of the state to the other but it did not quit or slow down for 6 weeks. Then it hit my neck & scalp, arms, legs, hands.

[Feeneyja]

Thank you so much everyone for sharing your experiences!!

I made an appointment with an allergist/immunologist at University of Chicago. I guess that is where we will start. Unfortunately it’s not until May 21st. Because an antihistamine has helped, we will keep going with that.  I’ll make an appointment with her pediatrician in the meantime. 

 

[Feeneyja]

Cyclinglady,

Do you know if someone with Mast Cell Activation Disorder is sensitive to all high histamine foods, all of the time?  Or are there particular triggers?  I ask this because in October we adopted the AIP diet for my daughter (she is 11)  and rashes, joint pain, and breathing issues all went away.  I have suspected dairy as the culprit, but haven’t tested it. We eat lots of high histamine foods and never had a problem (I make water kefir and sauerkraut, we eat smoked salmon and sardines, avocados, bacon, bananas).  

I’m trying to wrap my brain around what this might mean.  All of her random symptoms could definitely point to Mast Cell Activation Disorder. But could it only be when she gets glutened?  Or eats certain foods like dairy?

Also, do you carry an epi pen?  I have seen potential anaphylaxis as a symptom  

I’m hoping the doctor we are seeing in May can answer these questions. But I am losing faith in the medical community. Too many appointments with little resolution. 

Many thanks!

[cyclinglady]

Like celiac disease, everyone is a bit different with MCAS.  Symptoms and triggers vary.  I do not carry an EPI pen because my symptoms have not compromised my airway.  I have passed out many times, had very very low blood pressure, hives, swelling tongue, stuffy nose, abdominal pain,  vomiting, itching, etc.  Since my triggers are known and easy to avoid (e.g. medications), I do not worry about carrying an EPI pen.    Each trigger produces a different set of symptoms too.    My severe symptoms have only occurred with medications.  My personal solution is to not take any medications, unless it is life threatening and I am in the hospital or I am sitting in my doctor’s office for a few hours waiting for a reaction.  A kid would be different.  I have family members who do carry epi pens.  That is because, in my opinion, kids tend to share food or do stupid things like kicking a hornet’s nest or aggravating some yellow jackets.  I think it is something you need to talk to your allergist.  I think it also depends on how severe reactions are or progress over time.  Most of the internet stories show the really severe cases of MCAS.  Like any allergy, there are both severe and minor reactions.  

Gluten activates my celiac disease which flares my autoimmune gastritis and thyroiditis.  It can then be compounded by my seasonal allergies.  Throw in some stress (even excited stress) or heat and the right cocktail of triggers can release a bunch of mast cells throughout the body.   Gluten is not  a trigger of MCAS.    It just sets the scene for something potentially worse to occur.  Does that make sense?  

Again, histamine foods might make things worse, or they might not.  For me, it did not really matter.  At the height of my hives I was pretty desperate.   So, I tried the histamine Free diet.  But antihistamines did the job and those did not trigger any symptoms.  They just brought relief.  Like you, I just did not want to give up more foods!  Consider just reducing some foods, but not all.  Think of the glass.  It can only hold so much.  The problem is you do not know when the glass is too full.  Keep a journal.  

If the AIP diet worked.  Do it again for a week.  It might help.  

Use the forum search box and look for advice and discussions about MCAS.  We have many members who have it.