RBnorth66

23 hours ago, RebeccaLMoyer said:

@RBnorth66  @trents  @knitty kitty @Viv1990  

Q: Do skin biopsy results for DH that read "strong indication of DH" considered positive or not?

Reasons: I took skin biopsy result to my Integrative MD today, who said it was "not definitely positive for DH" because results read: "strong indication of dermatitis herpetiformis". 

Prior to this, the dermatologist said it is positive and sent me to gastroenterology for check. Gastroenterology did endoscopy w/ biopsy (even though I've been on gluten-free for ten years) and endoscopy came back clear (not surprising). Gastro says this means "Celiac Disease is not current active in small intestine " but refers me back to the dermatologist about the DH... and derma said she "doesn't know, try another gastroenterologist". Now the Integrative MD says it's "not positive" and I am SO CONFUSED. I really need to know whether this is gluten-related or not, because of the other disabling symptoms. 

PS: I tried to upload photos of rash for input, but files would not attach due to size. Currently I have blistering rash on/near my fingers on both hands and itchy petechiae on both right and left sides of upper & lower arms, elbows, knees, and a few on my nose. Still getting new spots/ breakouts of petechiae almost every day. 

 

My skin biopsy results say it's "positive" for DH.  It also has much more detail in the results.  It was a Direct Immunofluoresence  Test from the University of Utah.   I had a blood test for Celiac, which was positive.  Also, I have my DNA results which shows I have the genes for Celiac.  When I received my DNA results (prior to DH diagnosis) it said I was at a "slightly increased risk" for Celiac Disease.  Two years later I started having my DH symptoms.     With those 3 confirmations, my doctor said I did not need to have an endoscopy.  

I understand your frustration.  It took my dermatologist three months to figure out I had DH and he really didn't figure it out.   After 3 months of itching and breaking out, I realized that after I had eaten 2 slices of wheat bread and licorice one day, that my itching increased 10 fold.  I realized that it could be gluten and saw my derma doc several days later.  That's when he took the biopsy.  

I am fortunate in that my primary care doctor is really good and a smart guy.  When I got my results from the biopsy, I immediately called my primary care doc and saw him two days later.  He did the blood test and he has been the one treating me every since.  

If you are anywhere close to the Mayo Clinic, I think I would check into going there.  You need a complete workup.

On 8/5/2021 at 10:08 AM, RebeccaLMoyer said:

I am a severely sensitive Celiac/DH and brand new mother who is desperate because my illness is making me unable to care for my 8-week old daughter in the way I want to. 

Since her birth I am breaking out in new DH spots every day, sometimes multiple times a day. 

Biopsy came back positive for gluten antibodies ****In spite of ten years of ultra-strict diet& lifestyle ***** (please see below for details). 

I am even breaking out on the Autoimmune Protocol (AIP) diet with 100% adherence. My dermatologist tries, but is not helpful. So...please help, community!

Specifically, I need to know:

1. Did pregnancy change the expression of DH for any other mamas?

2.How long after gluten exposure you break out in new DH?  (To figure out a source)

3. How long can a single exposure trigger a reaction for? (Could accidental CC exposure mid-pregnancy could still be causing it 6 mths later)

4. Any recommendations for dermatologist consults that DO know about DH and practice in Ohio or virtual medicine.

THANK YOU!!!!!! Rebecca 

 

***** I was diagnosed in 2011 and must stress that I am fully educated and compliant with all gluten-free protocols and more. (I eat nothing not made in my own 100% gluten-free kitchen, and have already scoured my life for possible sources. Even the dogfood  & diaper wipes are gluten-free! I brought my own whole food to the hospital for labor.)  The AIP diet is ridiculously strict.

In addition to DH I am dealing with disabling fatigue, neurological, and psychological, and emotional symptoms [not just postpartum,  the brain fog & brain on fire we all know.too well]. I have full body intermittent tremors, labile blood pressure (from 100/70 to 155/110 unmedicated),and can't do gentle yoga or walking without days of recovery time.

I was 70 when I first started breaking out with DH so I can't answer your pregnancy question. 

I have symptoms 2-4 hours after ingesting gluten which includes corn, oats and rice.  

How long my symptoms last depends upon how much gluten I ate.  If it was a miniscule amount, then a few days.  If it was say, a slice of bread (that was supposed to be gluten-free) - several weeks.  Dapsone is the only thing that gives me relief.  I take 50-100 mgs. per day if I have an outbreak.  That said, I haven't had an outbreak for two months - since I stopped eating ALL grains, even the ones that are labeled gluten-free.

My outbreak was severe.  Dapsone was the only thing that relieved the horrible symptoms and that took about three months to work.  At least it seemed like it was working.  For about a year I stopped breaking out except every once in awhile I would accidentally ingest gluten and have an outbreak.  Then I would require more Dapsone.  I stayed on 25-50 mg. per day for two years.  I tried to get off of it, but couldn't.

Then after about 2 years I had a very serious outbreak of rash and it would not stop.  I was eating strict gluten-free.  I was very careful of CT.  I could not figure out where I was getting the gluten from.  Finally, after discussing it with my doctor, I went on the AIP diet in Jan. of 2021.  My rash outbreak stopped for a while and I re-introduced foods, but then it started returning.  I still couldn't figure out which food it was.  

In mid April I went AIP again.  I happened to read a book called No Grain: No Pain.  In the book it explains that other grains have gluten, it's just not the protein "gliadin".  https://www.glutenfreesociety.org/video-tutorials/gluten-sensitivity-what-is-it/   This is a long video that explains it.

It worked for me.  I am so happy to feel healthy again that I don't mind giving up foods with grain.  

I hope you find relief and something that can help you.  

1 hour ago, RebeccaLMoyer said:

@RBnorth66Thank you for this info! 

1.With the grain allergies did you break out in DH right away upon ingestion?

2. Did the grain allergies show up on a standard allergy (pinprick test)? 

With the corn allergy I start itching from 2-4 hours after ingesting.  I tried re-introducing it twice and had to take Dapsone for 3-4 days to stop the itching. 

 I did not take a pinprick test.  My doctor said they are not reliable.   As I was trying to figure this out I went to EXtreme lengths to be sure there was no cross-contamination in my kitchen,  I have the rash almost everywhere on my body, including my scalp.  I had very thick, long hair and almost all of it fell out before I figured this out.

With DH it is really hard to determine the cause of an outbreak since the symptoms are delayed. 

For me, once I had stopped eating ALL grains and went AIP the 2nd time, I slowly stopped taking the Dapsone (I was never able to do that before)  I could actually tell that my immune system response to the grains/food had finally stopped.  I then added other foods, dairy, nuts/seeds, eggs, coffee, chocolate, nightshades.  I added beans last.  

The only flours I use are Cassava, potato, coconut and almond.  I have Tigernut flour but haven't found it to be very useful.  I use the cassava flour with a small mount of potato flour for breading meat to fry, etc.  I am also experimenting with a blend of that for baking.  Since it's only been about two months of no outbreaks I really haven't experimented that much.

When you were on AIP did you get relief from your symptoms?   

I will mention that I did stop taking all supplements while on AIP, except my prescriptions, which I had to take.  They do not seem to affect me.  All personal care products are gluten-free.

I use baking powder and powdered sugar that does not contain cornstarch.   Reading labels is required  since corn or some derivative seems to be in everything.  

I hope you figure it out.  It's very difficult and very frustrating.  Take it easy on yourself.

At some point in this, I realized that I was the only one who could figure it out. 

I went on the AIP diet twice.  The 2nd time I figured out that I am allergic to ALL grains, including corn, oats and rice.  Corn is in everything.  There is cornstarch in baking powder and powdered sugar.   

I am not allergic to any other foods, just grains.   I was gluten-free for two years, but could never stop taking Dapsone and kept having periodic outbreaks of rash.  

It's been two months now and I no longer need Dapsone and no new outbreaks.  

Yes,  I have a prescription for it.  I'm not certain that it's helping.  Thank you for the suggestion though.  I may keep trying it once a week.

I have been on the AIP diet now for 61 days.  The good news is that the past 3 days I have had no itching, plus I have only taken 25 mg. of dapsone 1 day.  The diet seems to be working and some of my rash, which is everywhere, looks like it's starting to fade.  I'm not sure what to do about my scalp.  It has scaly-like dandruff all over it.  I have tried different shampoos and nothing seems to make an improvement.  I do not normally have dandruff.  

Has anyone experienced this?  

2 hours ago, Scott Adams said:

Does the almond flour say "gluten-free" on it? I ask because it's certainly possible that it could be contaminated, possibly where it was milled.

Also, we just did an article on the AIP diet, so please let us know how it works for you, and I'm sorry to hear that you're having issues:

 

Yes, the almond flour is gluten-free.  Bob's Red Mill gluten-free.

I don't buy anything that isn't labeled gluten-free.  

Thanks for the link to the AIP article.  I have been on AIP since April 19th.   I have only re-introduced coffee.  The re-introduction of almonds doesn't seem to work.  

I am now 6 weeks into my AIP diet.  I tried re-introducing almonds/almond milk and a bread made with almond flour.  I seem to have another outbreak of my rash.  Bumps on my scalp and itching today - 24 hours after eating almond based foods.  Has anyone else experienced this?  

I keep looking for CC of gluten and for the life of me, I can't figure it out.  I wipe my kitchen down with Clorox wipes every day.  There's no gluten flour in my house although me husband does eat food with gluten.  It is all stored in a separate place in closed containers.  We have separate pots and pans, etc.  

It's making me crazy. 

I'm trying to figure out what to do after AIP elimination diet.  I have DH and would like to try re-introducing a food, but which one?  I eliminated all AIP foods and added coconut and avocado.  I would like to try adding coconut back in.  

What do I look for?  Do I wait a week?  

What did you find out?

I forgot, no iodine and I am only taking my prescription drugs.  I have checked on them and they are gluten-free.  

I have been gluten-free for almost two years.  I have been on the AIP diet 38 days because just being gluten-free wasn't working for me.  I do not eat out.  No grains or oats, rice, corn are allowed on AIP.  No seeds, nuts, coffee, chocolate, sugar,(except honey or maple syrup), nightshades.  Also no dairy.  

I have been on the AIP diet for 38 days now.  It was my only answer after dealing with another serious outbreak of my rash.  I have been on a strict gluten-free diet for more than a year and seemed to be getting it under control until last August.  I'm on Dapsone but this time the itching would not stop.  I re-cleaned everything and tried to figure out if there was some way I was getting glutened, but came up with zero answers.

My rash is slowly starting to heal, (I have it everywhere, legs, back, stomach, armpits, scalp, arms).  The itching has stopped for the most part.  I eat only AIP

How do I start to re-introduce a food?  There's lots of info for Celiac but not for DH.  We have different symptoms.  I don't think I have an immediate reaction when I accidentally eat gluten.  I'm pretty certain that I am allergic to other foods, but don't know what it is, yet.