Gluten free but still with DH?

[Ron-UK]

I was diagnosed with celiac disease four years ago (through a biopsy and blood test). I immediately stopped eating gluten and have followed a rigid gluten-free diet ever since (I sometimes eat at restaurants and cafés but am always careful when I do). Around the same time (i.e. four years ago) I started having occasional rashes on my tush. I had previously had rashes on my elbows and knees that were thought to be eczema. The progression usually goes like this: an itchy red bump, followed by a raised yellowish blister (also itchy), spreading to a more diffuse pink splotch, finishing with a dark red scab, and then healing. 

I have always noticed that this usually occurs symmetrically on my body. Eventually it started appearing on my knuckles and fingers, and occasionally on my back and stomach. About a year ago it started to appear fairly intensely on my scalp. At night the itching (especially on my backside) wakes me up.

I went to the GP several times and received a variety of possible diagnoses (rarely with any degree of certainty): eczema, fungus, scabies, herpes. I was swabbed for herpes three times with negative results each time. I was prescribed a variety of creams and topical steroids, none of which really worked, except that the steroid (Eumovate) does reduce the itching. More recently I've been using an essential oil mixture that also seems to help the itching.

 I occasionally get periods of remission, often when I travel, and most recently when I had the flu and my skin cleared up completely for a week. I'm never able to really identify anything different in my diet during these periods of remission. At one point the herbalist put me on the Gaps diet, which I did for a couple months with limited success.

My questions are these:

1) are there other people here who have adopted a strict gluten-free diet but still have DH?

2) my GP told me that even though I have been gluten-free for a long time, a biopsy of my skin would still give good results, because I have active symptoms. Does anyone have experience with this?

I'm open to any other advice and information people would like to add. I've been reading this part of the forum and have already learned a lot.

Thanks

[Maggie C]

You might want to go grain free for awhile. Corn along with gluten cause me in itch and break out in a red itchy blistery rash. And it’s all things corn for me.... corn starch, corn meal, corn syrup  etc.  It sucks .  I have to watch all ingredients.. corn is everywhere 

[GFinDC]

Some people with DH find going iodine free helpful to curb the reaction.

[squirmingitch]

Google the Fasano Gluten Cross Contamination Elimination diet. I have been gluten-free for 6 years. My dh did not fully resolve until I went on the Fasano diet.

The doc who told you a dh biopsy would be valid is full of baloney. At the very worst, you are super gluten light & that won't get it for a dh biopsy. The gluten challenge for a dh biopsy is the same as for the serum panel which is 12 weeks of daily gluten. 

It sure sounds like you have dh. DH is unbelievably sensitive to the tiniest amount of gluten. You would do best to quit that eating out. Go out, meet your friends or family or whatever but bring your own food to eat or eat before you go. I don't care how careful you are when eating out, YOU are not there in the kitchen making sure your food does not get cross contaminated.

The dh rash can come & go whether you're eating gluten or not. It's maddening!!!!! The antibodies are deposited under your skin & they just sit there like little grenades waiting for something to set them off. It could be stress, cross contamination, illness, who knows.....

Iodine could also be triggering the rash. Check thyca.org for a low iodine diet (leave off the gluten). Also, NSAID's tend to make the rash flare.

Question:

When you had the flu, did they put you on antibiotics or any other med?

[Ron-UK]

Thanks, everyone, for the helpful responses. 

squirmingitch: No, I was not on any meds when I had the flu. (I took paracetamol a few times.) My layman's thinking was that my skin cleared because my body's immune system was in overdrive, so to speak. I don't know if that actually makes medical sense.

I'm intrigued by the Fasano diet (seems much easier than the Gaps diet). In fact I have for years generally avoided processed foods. The exceptions come when I dine out, I guess, and I'm willing to give that up on a trial basis. Recently I decided to substitute buckwheat for oats in the morning, but in general I have been eating lots of oats, corn and buckwheat. I also consume goat's milk, goat's cheese and eggs. 

These are my follow-up questions, then:

1) Where is the Fasano diet described comprehensively? I've found a variety of sources through Google, like this one, but is there more I should know?

2) I read people in this forum commonly referring to being tested for antibodies. Which antibodies, and through what kind of testing? (I thought there was only one antibody responsible for celiac.)

3) Thinking of general food allergens, might it still be worth being tested for IgG antibodies through a company like this one?

Again, thanks to all for the help.

[squirmingitch]

2 hours ago, Ron_UK said:

squirmingitch: No, I was not on any meds when I had the flu. (I took paracetamol a few times.) My layman's thinking was that my skin cleared because my body's immune system was in overdrive, so to speak. I don't know if that actually makes medical sense.

 

I have thought this kind of thing also. Who knows? We may be correct.

2 hours ago, Ron_UK said:

1) Where is the Fasano diet described comprehensively? I've found a variety of sources through Google, like this one, but is there more I should know?

There is more info. here:

http://www.todaysdietitian.com/newarchives/0816p14.shtml

And this is very good to watch

 

2 hours ago, Ron_UK said:

Recently I decided to substitute buckwheat for oats in the morning, but in general I have been eating lots of oats, corn and buckwheat.

NO, NO, NO! Ditch the oats!!!!! Many of us with dh can not tolerate even purity protocol grown oats. My advice would be to steer clear of oats of any kind.

2 hours ago, Ron_UK said:

2) I read people in this forum commonly referring to being tested for antibodies. Which antibodies, and through what kind of testing? (I thought there was only one antibody responsible for celiac.)

 

There are 6 tests in the celiac serum panel -- all testing antibodies in the blood. You've already been serum tested & biopsy tested for celiac disease & were positively diagnosed. You do not need to be diagnosed again for celiac disease NOR for dh b/c dh IS celiac disease & the prescription is the same which is strict gluten-free diet. BTW, you were lucky to test positive on the serum b/c 60% of us with dh test false negative.

2 hours ago, Ron_UK said:

3) Thinking of general food allergens, might it still be worth being tested for IgG antibodies through a company like this one?

 

NO. Celiac disease is NOT an allergy, is is autoimmune. Very different thing than an allergy. Allergies are IgE not IgG or IgA. It is possible to have a wheat allergy concurrently with celiac disease but does it really matter? The answer to both would be NO wheat only with celiac, that includes barely & rye as well.

[GFinDC]

Hi Ron,

If you are already gluten-free, the testing won't work.  The antibodies need time to build up in the bloodstream, so the person being tested is supposed to eat gluten every day for 12 weeks prior to testing.  They call that a gluten challenge.  It doesn't matter though, you were already diagnosed by endoscopy and blood antibody testing.   If you were tested for antibodies again today, they should not show up as positive because you have been off gluten a while.  Unless you have been consistently eating gluten contaminated foods.  Only 1 antibody test needs to be positive to have celiac disease.

For DH they do a skin biopsy test.  They take sample of clear skin from next to a lesion.  DH is a form  of celiac disease though, so there's not much point IMHO.  Although your dermatologist might want to do the biopsy before prescribing medication.

Don't go to just any doctor for celiac testing.  Most people with celiac disease are undiagnosed still.  That's because doctors don't do a good job diagnosing or recognizing celiac.  It can be very helpful to go to a doctor that other celiacs in your area trust.  So a web search for a celiac support groups in your area might find you a local group who can recommend a doctor.

[cyclinglady]

I do not have DH, but I do have celiac disease.  I also have many food intolerances and allergies.  Please research allergy testing.  I think you will find that results are not very accurate.  If I recall it is around 50%.  Consider, after experimenting with the Fasano diet (excellent advice), keeping a food diary.  

[Ron-UK]

Thanks again to everyone for the helpful replies. One thing I'm wondering about the Fasano diet is what exactly constitutes 'processed'? Is pasta made from 100% brown rice flour considered processed? 

[cyclinglady]

1 hour ago, Ron_UK said:

Thanks again to everyone for the helpful replies. One thing I'm wondering about the Fasano diet is what exactly constitutes 'processed'? Is pasta made from 100% brown rice flour considered processed? 

Yes.  Stick with plain rice.  Non-processed or minimally processed foods that odds are are not processed anywhere near gluten (e.g. milk, plain yogurt, butter, nuts in a shell).  I do not know why Gatoraid is on the list.  I supposed Dr. Fasano, being a PED GI, had concerns about sick kids in terms of electrolytes or something.   Kids will drink it....yuck.   

When I did this diet, I did not give up coffee.  I think it worked.   My repeat biopsy after five years was normal!  ? I tried the diet after a bad glutening last year.  I had lingering issues even after the diet.  Turns out I have Chronic Autoimmune Gastritis and my celiac disease is in remission.  

Edited May 6, 2018 by cyclinglady

[squirmingitch]

Here is the diet:

Anything not in the column "include" is not supposed to be eaten. I could not use the gluten-free supplemental formulas b/c they all contain carrageenan which makes my dh rash go nuts as it is high in iodine. I also could not drink the Gatorade & I do not know why - call it an "other food intolerance". I did drink instant coffee with no problems and I made iced tea from tea bags & put sugar in it & the coffee. 

[Ron-UK]

On 06/05/2018 at 9:59 PM, cyclinglady said:

Yes.  Stick with plain rice.  Non-processed or minimally processed foods that odds are are not processed anywhere near gluten (e.g. milk, plain yogurt, butter, nuts in a shell).  I do not know why Gatoraid is on the list.  I supposed Dr. Fasano, being a PED GI, had concerns about sick kids in terms of electrolytes or something.   Kids will drink it....yuck.   

When I did this diet, I did not give up coffee.  I think it worked.   My repeat biopsy after five years was normal!  ? I tried the diet after a bad glutening last year.  I had lingering issues even after the diet.  Turns out I have Chronic Autoimmune Gastritis and my celiac disease is in remission.  

Thanks cyclinglady. I probably should have mentioned that the brown rice pasta I'm referring to is labeled gluten free and has the official gluten free symbol on it. I think the regulations for this kind of labelling are fairly strict in the EU (I'm in the UK). Also, it's 100% rice flour.

Edited May 11, 2018 by Ron_UK

[disgruntledceliac]

If you haven't already, try tracking down a book by Alessio Fasano called Gluten Freedom. The Fasano diet gets discussed (briefly) in this book, but the rest of the information is very helpful as well.

I follow the Fasano diet after dealing with persistent DH, despite following a gluten free diet for a couple years. I've dropped processed foods, including those that are labelled "gluten free". It has cut down on my options, but my rash is diminished notably in the past month or so. Note that the Fasano diet is not intended to be permanent - the idea is that by following it for 3 or 6 months you should be able to heal your insides, allowing you to go back to eating the "gluten free" processed foods without incident.

Best wishes to you. I know from personal experience that this is difficult, but by posting here I think you're taking the right measures to get better.

[Posterboy]

On 5/6/2018 at 9:54 PM, squirmingitch said:

I also could not drink the Gatorade & I do not know why - call it an "other food intolerance".

squirmingitch.

If you haven't tried it in a while you might try it again.

It (Gatorade) used to have brominated vegetable oil (BVO) it and Bromine being a Halogen can bond to the same site in the skin as Iodine and thus might mimic Iodine consumption in the body.

https://www.shape.com/blogs/shape-your-life/pepsico-remove-flame-retardant-bvo-gatorade

quoting the the shape.com article

"BVO leaves residues in the body’s fatty tissues, including the brain, liver, and other organs," Hartley says. "It can cause a wide variety of symptoms, such as headaches, vision problems, loss of coordination, and skin rashes. Animal studies show that BVO is transferred from mother's milk to a nursing infant, which, in theory, could cause heart lesions, fatty changes in the liver, impaired growth, and behavioral problems."

An extensive article published in the journal Scientific American in 2011 supports that claim, citing that BVO build-up could lead to altered thyroid hormones, neurological problems, early onset of puberty, and impaired fertility. Moreover, BVO is banned in more than 100 countries."

But it was replaced with Sucrose acetate isobutyrate in Gatorade around circa May 2014.  And other Coke and Pepsi products.

https://www.usatoday.com/story/news/nation/2014/05/05/coke-pepsi-dropping-bvo-from-all-drinks/8736657/

I hope this is helpful.

*** this is not medical advice.

Posterboy,

 

[squirmingitch]

Thanks Posterboy but it was not the BVO Gatorade that bothered me b/c this was in 2017 which would have been well after the 2014 replacement date. I do appreciate you posting your research though.

[Posterboy]

Squirmingitch,

If it was not the BVO then the other two ingredients (as I understand it) that many people also react to in Gatorade is Citric Acid and Artificial Food Coloring (AFC).

Try some Citrus foods to see if they trigger your DH.

Here are a couple good articles on these topics.

This one is on AFCs. Red 40 is the most common AFC.

https://www.forbes.com/sites/rachelhennessey/2012/08/27/living-in-color-the-potential-dangers-of-artificial-dyes/#2ac45693107a

Here is someone's personal journey/story with a Citric Acid intolerance.

http://milind.com/2013/10/12/citric-acid-intolerance-acetic-acid-digestion-and-metabolism-disorder/

Most drinks either use Phosphoric Acid (Sodas and some Teas) or Citric Acid (Gatorade and sports drink etc.)

If sodas don't bother you which has phosporic acid in it does then it is probably the Citric Acid.

Some Lipton tea's have Citric Acid in them soooo . . . be sure to read the label.

http://www.eatingrealfood.com/articles/ingredients-in-liptons-bottled-tea-products/

according to livestrong most green teas unless flavored by lemon are citric acid free.

https://www.livestrong.com/article/189520-what-drinks-do-not-contain-citric-acid/

I hope this is helpful.

On artificial food coloring front thankfully most AFCs are listed in the ingredients and you can avoid the one's that might be causing your DH to flare and know which ones to avoid in the future.

A little testing should allow you to drink some but not all Gatorades depending on the AFCs used if Red 40 or another AFC is causing your DH flare. . . but I think I would avoid all AFCs for know if you can.

**** this is not medical advice

Posterboy,

Edited May 27, 2018 by Posterboy
add note about most green teas unless flavored by lemon are citric acid free accodring to Livestrong plus the link to the article

[squirmingitch]

Posterboy, I truly appreciate your trying to help and this info. may be helpful to someone who reads this but as for me; I don't like Gatorade in the first place. It's not as if I want to drink it. I only tried it to help me keep electrolytes during that time I was on the Fasano diet. I figured it wouldn't hurt to have those. I drink water, water, water, coffee, tea & milk. That's what I like & have no desire for much else. Never was a fan of sodas.

[Posterboy]

Squirmingitch,

I only drink Gatorade a few times a year myself usually when I have been sweating all day to replace electrolytes.

Otherwise I prefer more natural tea.

I only meant if you knew what flavor (AFC#) it was you could avoid that same food coloring in other foods.

I have a friend who can only eat organic meats and now I know why.

see this foxnews article about the things US foods contain that can't be sold in other parts of the world.

http://www.foxnews.com/food-drink/2013/10/23/foods-americans-eat-that-are-banned-around-world.html

I must admit it was  surprise to  me.  And now I appreciate more people desire to eat foods free of artificial food colorings (AFC) and additives.

And while I still like Salmon I didn't now it was being colored by products made from the petroleum industry.

I thought astaxanthin was a natural product.. .common in Red foods.. . but apparently there are synthetic forms too.

It is commonly sold for "eye health".. . and maybe supplements are from a natural source. . . I don't know but sometimes it seems it is hard to know.

https://www.webmd.com/vitamins-and-supplements/astaxanthin#1

Maybe it will help the next person.

****this is not medical advice.

Posterboy,

[squirmingitch]

Oh I DO know what you mean! It gets so hard to know what's fake & what's real ingredients in which food & what those ingredients will do to you. It's a virtual maze. Yes, the salmon. I keep wanting to eat some but I just can't bring myself to do it. After all I've read, the pesticides they are fed, the coloring, this, that & the other. I grew up between the ocean & the river (salt water) & we ate fresh fish that we caught. I well know what fresh fish looks like. Over the years, it's gotten harder & harder for me to buy fish from anywhere b/c it's getting lousier & lousier looking. It isn't very fresh! Sunken eyeballs is NOT a fresh fish, dented, non plump flesh is NOT a fresh fish. I can't do it. I haven't eaten any fish in years.

[Mia J]

Ron, just to add to the content in case it helps. I've been gluten free for 25 years (since the time I was diagnosed) and still get DH. I used to go years and years between outbreaks, but the latest was just a year apart. I've learned from this forum that picking up even tiny amounts of gluten can result in antibodies being released but lying dormant, only to be triggered at some point, and producing the rash from hell. I'm really careful, but I know sometimes trace amounts sneak in. Stress is a big trigger for me, I think. Some people respond well to things like lidocaine products or topical steroids. I've tried all of that, including steroid injections, and they didn't work for me at all. What has helped me tremendously, is taking quercetin at the first sign of the rash (the tingling pain before it starts if possible), and taking 10 mg of  Doxepin at night. This currently makes it about 90% better, and I'm hoping it continues to work. Topically, I haven't found anything that works very well. I do sit in a tepid bath with Epsom salt and 10 drops of tea tree oil, which provides temporary relief. I also moisturize with coconut oil and a tiny bit of tea tree oil. When I was covered with the rash and not sleeping at night, cold towels on top of me eased it enough so I could sleep for a few hours. Before getting diagnosed my allergy tests all came back negative. I had gone off of gluten already and had just had a steroid injection, which would have compromised accuracy. In addition, one of my lesions was biopsied - not the area near the lesion. I finally was referred to an allergist, who diagnosed me based on the intensity of the rash, and my history. I've learned about how to live with this condition from these forums, and I'm so grateful for that. Good luck!

[Anniehall]

Google about gluten because gluten free is not really gluten free because all grains have gluten it's just not the same gluten as barley wheat and rye. That's where gluten cross reactives come in. I did elimination diet food testing for a lot of the last year where you try one food only and wait three days to see if a reaction occurs. For me if I react to one food in a food family I likely react to others in that food family. So wheat is in the grass family. There's lots of sub families of the grass family as well and just because you react to one food in a family doesn't mean you react to all of them but I would be suspect of other foods in the family because for me there are certain food families that have several foods in them that cause reaction. Sugar and corn and millet are all the same sub family of the grass family. I don't seem to react to corn or sugar really. Haven't tried millet yet. I do react to honey because if the bees pollinate gluten plants or other cross reactors that one is sensitive to the honey can cause a reaction for a person with celiacs. I react to foods in the rose family, night shades, and allium ( garlic and onion )but it's very mild usually only acne. My worst reactors are pretty much all plant based major protein sources ( nuts, legumes, grains, seeds). So cutting those all out and then adding them back in one at a time and waiting 3 days for a possible reaction to see which is effecting you is a good idea. I noticed that if I combine a food sensitivity with marijuana the rash is at its worst. I believe this is because marijuana is a stone fruit cross reactive and stone fruits are in the rose family. Although when I was a child I had hives only one time all over after eating at Culver's. I had a breaded chicken sandwich, fries and a strawberry shake. I wonder if this was one of my first symptoms of celiacs and if the hives formed due to strawberry and gluten combo.  The celiacs rash started coming on in my late twenties was diagnosed as foliculitis, was constant, starting turning to blisters at 32 giving me lots of herpes scares because it's always on my butt and thighs. Both the alleged folliciltis and herpes always tested negative for herpes when swabbed.  Herpes blood test came back negative for type two but positive for type one which is usually only on the lip and very rarely below the waste. 

[Anniehall]

For me tea tree oil seems to make any kind of blister I have worse. Not sure why. I prefer not to put anything topical on blisters but to do my best to let it dry out and keep it cool. 6000 milligrams of vitamin C and lysine clear the rash quick for me.

[Anniehall]

I haven't noticed myself reacting to iodine whatsoever. My main protein sources are dairy and meat. The problem with that is lots of saturated fat so I try to get lowest fat dairy as possible to and limit my meat. 

[knitty kitty]

On 4/30/2022 at 11:20 AM, Anniehall said:

I haven't noticed myself reacting to iodine whatsoever. My main protein sources are dairy and meat. The problem with that is lots of saturated fat so I try to get lowest fat dairy as possible to and limit my meat. 

DAIRY is high in iodine!

[NinaS]

On 5/5/2018 at 5:19 PM, Ron-UK said:

I was diagnosed with celiac disease four years ago (through a biopsy and blood test). I immediately stopped eating gluten and have followed a rigid gluten-free diet ever since (I sometimes eat at restaurants and cafés but am always careful when I do). Around the same time (i.e. four years ago) I started having occasional rashes on my tush. I had previously had rashes on my elbows and knees that were thought to be eczema. The progression usually goes like this: an itchy red bump, followed by a raised yellowish blister (also itchy), spreading to a more diffuse pink splotch, finishing with a dark red scab, and then healing. 

I have always noticed that this usually occurs symmetrically on my body. Eventually it started appearing on my knuckles and fingers, and occasionally on my back and stomach. About a year ago it started to appear fairly intensely on my scalp. At night the itching (especially on my backside) wakes me up.

I went to the GP several times and received a variety of possible diagnoses (rarely with any degree of certainty): eczema, fungus, scabies, herpes. I was swabbed for herpes three times with negative results each time. I was prescribed a variety of creams and topical steroids, none of which really worked, except that the steroid (Eumovate) does reduce the itching. More recently I've been using an essential oil mixture that also seems to help the itching.

 I occasionally get periods of remission, often when I travel, and most recently when I had the flu and my skin cleared up completely for a week. I'm never able to really identify anything different in my diet during these periods of remission. At one point the herbalist put me on the Gaps diet, which I did for a couple months with limited success.

My questions are these:

1) are there other people here who have adopted a strict gluten-free diet but still have DH?

2) my GP told me that even though I have been gluten-free for a long time, a biopsy of my skin would still give good results, because I have active symptoms. Does anyone have experience with this?

I'm open to any other advice and information people would like to add. I've been reading this part of the forum and have already learned a lot.

Thanks

Hi I have DH

Dapson is med that u take when u flear up , sometimes some things have gluten although that it's say gluten free ...you primary Dr should be ok giving u this of u have written diagnosis

Good luck dapson Wil clear everything up in day or so