Are There Always Blisters?

[Sharon C.]

My dermatologist doesn't believe I have DH even though the skin biopsy was inconclusive. His reason was because the rash I have does not have obvious fluid filled blisters. It does, however, seem to linger on my elbows and knees, calves, and ankles mostly. And it leaves scars. I occasionally get a spot on my back or butt, but the main places are elbows/legs. It resembles the spotty elbow rash I have seen on the internet. I was never technically dignosed with celiac, either, because it's almost impossible to find an American doctor that's capable. My 10 year old son was diagnosed through blood tests and an endoscopy, though, with the help of a pediatric endocrinologist. He is definitely Celiac. When this rash broke out, I had been eating a yeast-free whole wheat bread, and yeast-free rye bread, thinking I was doing myself a favor because an allergist told me I was allergic to yeast. I was consistently eating it for a few months, daily, then wham- this rash.

The dermatologist suggested I was getting bit by bed bugs, even though my husband doesn't have one single bite on him and I have had this rash since September and it's now January. I think my husband would have at least one bite in all these months. Just to be sure, I did a thorough search and found none of the evidence you would find if your bed was infested with bed bugs. I notice when I consume products high in sea salt, the bumps on my elbow which "appear" to be healing suddenly turn red and look inflamed. It will even appear that I have more of them. I don't wake up like that, it seems to happen during the course of the day and I think it's food related. It's very frustrating to have a food related rash that even appears to act up upon eating and be told I must have bed bugs.

Are there always blisters? Because this dermatologist feels it's pointless to further investigate the DH in the absence of blisters. Thanks!

[mtdawber]

I think everyone is different. I get patches on my feet, arms, back, head, stomach, legs. Most of the places I get a rash have the blisters but my feet and elbows don't always show blisters.

If you go gluten free and it clears up you'll have your answer.

[Katie618]

DH is definately tough to figure out!! Before i was dx with celiac my family thought i was bitten by bed bugs too.. we search scabies, bed bugs, chronic rashes, chronic hives on the internet. when i was dxed with celiac, i made sure i went to the dermatologist because i thought i had DH after reading about it online- my symptoms were just too close to what i was reading my dermatologist did a biopsy too-- it also came back inconclusive.. he took the biopsy wrong-- a skin biopsy is supposed to be done next to the leasion/outbreak... not on it (if it is done on the leasion it will come back inconclusive because it's getting crusty and healing; mine came back as ezcema, wich i already have) my dermatologist still believed i had it and sent me to Yale. at Yale they had my igA levels measured by a blood test and i guess i the blood test results came back as positive for DH- so i was put on dapsone

mine is also on my elbows, knees, and ankles-- classic spots! is your DH symmetrical? it doesnt have to be fluid filled- mine usually look like hives, however sometimes they are fluid filled (usually when i get an outbreak on my hands). if your biopsy comes back as DH, then your have celiac. Celiacs do or do not have DH, but DHers always have celiac disease

Besides gluten- DH also hates stress and iodine-- iodized salt, seafood, seaweed, etc. i did not think sea salt was iodized, maybe your brand is? what are you putting the sea salt on, maybe thats was is aggrevating it.

hope this helps-- good luck!! keep pestering your Dr.'s especially if you believe you have celiac disease/DH- there is a forum on here for Drs, maybe that will help you find someone!

[RiceGuy]

Personally, I am already convinced that what you are experiencing is DH. Most of the few I have had didn't show much if any fluid blister on them. I also noticed that salt seemed to make it worse. My research led me to conclude that it is the iodine in the salt which increases the appearance of the rash, because the body apparently uses iodine when healing the skin.

[mtdawber]

Besides gluten- DH also hates stress and iodine-- iodized salt, seafood, seaweed, etc. i did not think sea salt was iodized, maybe your brand is? what are you putting the sea salt on, maybe thats was is aggrevating it.

Maybe this is a stupid question, can the DH come out from just stress or iodine? I have a pretty stress filled job (among other things) and know that stress plays a factor, but could the stress cause the outbreak on it's own or does the gluten have to be there?

[RiceGuy]

Besides gluten- DH also hates stress and iodine-- iodized salt, seafood, seaweed, etc. i did not think sea salt was iodized, maybe your brand is? what are you putting the sea salt on, maybe thats was is aggrevating it.

Sea salt can be iodized, but that is done when the salt is kiln-dried. This is because the high temperature of the kiln destroys the naturally occurring iodine, so an equivalent amount is typically added to compensate. The lack of iodine was discovered as the cause of a goiter epidemic around the late 1800's. Sun-dried sea salt retains the iodine it already has, which is why I choose that type. Good quality sea salt that has not been bleached will not be totally white (yes, bleaching is what makes ordinary table salt white), and it will have the iodine too, plus any other trace minerals that happen to be there. Different regions of the planet have their own unique looking salt, with varying amounts of trace minerals. Those minerals contribute to the color it has.

[Ursa Major]

Sharon, I used to get 'flea bites', 'mosquito bites' in the winter (right ), bed bug bites (the only one in the family) etc.

For some reason, now that I am gluten-free, all those 'bugs' seem to have just left this house.

I suggest you forget about ignorant doctors, and try a gluten-free diet, to see if it will help.

[SpikeMoore]

Hi there

I too had an inconclusive biopsy, but it was a lesion that was biopsied (I've read it should be on clear skin). Most of the spots looked like bug bites, but on a close look, had a tiny blister on the top, but I understand that these are easily scratched off by most people because they are so itchy. Locations the same as most of you. For me they started in the spring when I got on a baking kick and I found they were often brought on by excercise/heat. They are the reason I tried gluten free and I've had none since. I was getting them every 2 weeks or so.

[Sharon C.]

I have been gluten free since October 21st and although the rash has definitely improved, it's not gone. Also, without the help of Dapsone, I understand it might take longer for my skin to clear up- possibly up to a year or more. When I eat salty foods (potato chips, corn chips) I definitely see the rash act up. I will probably have to go to some university as well in order to get a half way decent test done. I have been gluten free for a couple of months, though, meaning I would need to ingest gluten for accurate blood testing. I don't know if another skin biopsy would help since I've been gluten free. If salt aggrivates it, and it's not acting up from gluten, would that affect the accuracy of the skin biopsy results? The scabs last and last and last and just never seem to go away. Any purple spots that appear to be healing spots easily turn red when aggrivated.

Well, thanks.

[teebs in WV]

If I were you I would ask for another biopsy. Even though you are gluten-free, it can take a long time for it to get completely out of your skin (as you mentioned). I was diagnosed via skin biopsy in Oct. 2005, immediately began gluten-free diet and started dapsone at the same time. I have tried many times to go off of dapsone but I still break out after a few days.

[georgie]

I have never been formally dx with Celiac but have done really well since going gluten-free, and get incredible G symtoms when I get accidentally Glutened. I also had 2 rashes that appeared last year and they were perfectly symmetrical but did not have blisters. The red lumps looked more like mosquito bites and the skin around was grey ,thickened and scaley.

Dr wasn't sure what it was..... Since going gluten-free that rash has disappeared. I still feel a little itchiness there but there are no visible signs. Is this DH ? Is it too late for a dx ?

[Mary in San Diego]

Hi there... my first time on a site like this...

I have DH, diagnosed at 21 now I'm 42. I have had it since I was 14, but was misdiagnosed for about 7 years. A typical US case it appears.

Eating any products that contain OATS and anything with IODINE in it causes me to have a far worse break out of DH than consuming some wheat products. Lots of stuff is labelled "wheat-free" but it isn't gluten-free. Also, I have read and personally experienced the link that gluten intolerant (or celiac) persons have with iodine. It is also known as carageenan (in ice cream, some gum, used as a thickener, makes things creamy), spirulina, sea algae, sea greens and is found in most multivitamins. It is also in shellfish (shrimp, lobster), so avoid those. I don't know how much is in iodized sals, but the fact that it is iodized makes me think there may be some iodine in there.

My rash can be red and mosquito bumpy or actual clear blisters. They itch like crazy!!! I get a blood-blistery type bump on my hands (especially if I've eaten food with iodine in it) that itches really intensely.

I found that TwinLab makes a great multivitamin for sensitive/allergic individuals. No wheat, eggs, soy, milk....etc. It worked great for me when I was pregnant and I continue to take them every day, 7 years later. They are found at most Ralph's or Kroger stores and some Wild Oats, Henry's stores. GNC also has a good woman's multivitamin that is allergen free, but it has both iodine and iron removed.

For my DH rash, my doctor prescribed a cream called Clobetasol for intense itching. Never to be used on thin skin (face especially), it stops the itching and makes my outbreaks far less intense. It doesn't work on my hands, (I guess the skin is too thick) but everywhere else it is great!. I typically peel a bit on my elbows and knees about 5 days later, but it stops my outbreaks while the telltale tingle is just beginning. I don't use it very often, just when I have cheated and eaten something I probably shouldn't have and feel the rash coming on.

I take Sulfapyridine (made by Jacobus Labs in New Jersey) to control my gut and skin symptoms. It is a tablet taken orally. It used to be made for years by Eli Lilly but wasn't profitable enough. It is now considered to be an "orphan drug" where Jacobus makes it but makes no money from it. I have to submit twice annual blood tests through my dermatologist (I have a great dermatologist through Kaiser Permanente in Southern California) and they monitor liver functions, and iron. Sulfapyridine can cause anemia and because it is broken down in the liver, they want to be sure that users liver enzymes remain normal.

I tried Dapsone, but I got a different rash from it and headaches, too.