Dh Sores

[farmgirl12]

Ok,

So I finally got diagnosed with DH, after 2 years of suffering with the sores. I have been gluten free for over 8 months now and have been on Dapsone 50mg a day for 3 months now. The sores on my scalp and forehead are another story! All of the sores on my knees, elbows, backside and feet are gone. I really haven't gotten more than a couple of new sores on my head, but most of the old ones are gone except maybe 5 and they will not seem to stop oozzing, and crusting over. Then of course they hurt because they are oozzing and can't oozze because they are scabbed/crusted over so I end up picking the scab off to let the fluid out. As most of you probably know, this whole process is completely painful, as well as the fact that the pain never really goes away. If I wash my hair several times a day it lessens, i use neutrogena t-fal--and it works great compared to anything else I have tried, its very soothing.

Anyway, I can no longer go to the doctor due to the fact that I don't have medical insurrance, so I'm just wondering if I need to be patient and wait this out for several more months and then the sores might dry up or what? I need some direction from others who suffer with this affliction.

I am so sick of going somewhere and being around family and they make remarks about my not being able to eat gluten and how I have celiac's. Doesn't the world know that there are other problems associated with gluten???

Help me please!!

Thanks so much,

Noel

[ravenwoodglass]

Have you cut iodine out of your diet? If not do so for a bit until the sores heal as iodine will keep the antibodies active. You mentioned you shampoo your hair multiple times a day, that may not be the best thing to do as it will really dry your scalp and hair out badly. Are you using a conditioner? If you are is it for sure gluten free? Also have you checked to be certain that your shampoo is also free of any gluten ingredients? Make sure your diet is strict, go with whole foods and be very careful of cross contamination. It takes very little gluten to keep the antibodies active. In addition have you had your doctor look at the sores that are not healing to make sure that they are not infected and that isn't what is causing the continued issue?

[cassP]

will they just go away on their own after a certain amount of time being gluten free??? I getting really annoyed with mine and dont want to have to cut out seafood or get on that antibiotic.. Annoying, i never had this untill a few months ago

[txplowgirl]

I would recomend what Raven said. I cut out the iodine, went to using sea salt, changed my shampoo and conditioner. Instead of shampooing several times a day, went down to once in the evening before bed and started eating whole foods, no processed foods at all. I had lesions on my scalp for over 25 years, meds didn't help either. After doing this for 2 months they were gone, and they stay gone unless I get a severe glutening.

Best of luck to you.

Vicky

[farmgirl12]

Have you cut iodine out of your diet? If not do so for a bit until the sores heal as iodine will keep the antibodies active. You mentioned you shampoo your hair multiple times a day, that may not be the best thing to do as it will really dry your scalp and hair out badly. Are you using a conditioner? If you are is it for sure gluten free? Also have you checked to be certain that your shampoo is also free of any gluten ingredients? Make sure your diet is strict, go with whole foods and be very careful of cross contamination. It takes very little gluten to keep the antibodies active. In addition have you had your doctor look at the sores that are not healing to make sure that they are not infected and that isn't what is causing the continued issue?

[farmgirl12]

Hi all,

thanks so much for your responses! As I stated i use Neutrogena T-fal shampoo as well as the T-fal conditioner. As far as I know and have researched--all neutrogena products are gluten free.

I also forgot to mention in my haste that I thyroid disease and take 400 micrograms of levoxyl daily. I also had gastric by-pass in 2006. My dermatologist is just certain that if I had this reversed that this whole thing would go away--i think he is high--personally.

Again I haven't talked to my doctor for about 2 months because it costs me $120 to go see him--and I am one of the fortunate one to be un-employed at this time.

So--Raven, if you could please tell me a little more about cutting out the iodine--that would be very helpful. Again I so appreciate all of your concern as well as advice. Its nice talking to others who don't think 'm nuts.

Noel

[ravenwoodglass]

What I did was to drop iodized salt, I used sea salt which does not have added iodine. I also made sure that I wasn't taking iodine in supplements and avoided seafood for a bit. I added it back in after I had been DH free for a while as it is an important nutrient.

Have you called the maker of the med your on to make sure it is gluten free? If not you should do so. The name of the maker should be on the bottle or your pharmacist can tell you who it is. Some pharms don't check meds even when we ask them to unfortunately. The ingredient list on the med won't tell them and some just don't take the time.

[cahill]

Mine were all most gone but now seem to be as bad as ever.. Mine are only on my back and butt,,Is that unusual?I am currently eliminating soy from my diet ( I seem to react to soy as intently or possibly more so than gluten ) could it be the soy?? Fish ???

[ravenwoodglass]

Mine were all most gone but now seem to be as bad as ever.. Mine are only on my back and butt,,Is that unusual?I am currently eliminating soy from my diet ( I seem to react to soy as intently or possibly more so than gluten ) could it be the soy?? Fish ???

If your fairly new to the diet it is likely you are getting CC'd somewhere. Are you eating mostly whole unprocessed foods and have you eliminated gluten from toiletries?

[cahill]

If your fairly new to the diet it is likely you are getting CC'd somewhere. Are you eating mostly whole unprocessed foods and have you eliminated gluten from toiletries?

I am fairly new to the strict dietary changes ,after my diagnosis it took me awhile to get my head around the changes i needed to make,, sometimes I get so overwhelmed with all of this, **deep breath**,,I never thought to check my bath soap.I have recently changed shampoos I need to double check them ..I have eliminated about 95% of processed foods from my diet and am working on the other 5%..

[cassP]

i thought that Sea Salt & any Seafood, for that matter, contained iodine????

i had also read once to eat alot of seaweed for the iodine- to help the thyroid work right-

now this is quite a conundrum- to have Celiac & DH- AND possibly a Hypothyroid... OY

[rdunbar]

Hi I totally understand the frustration, am going through the same thing. Apparantly DH can take up to 2 years being strictly gluten-free, CC free to really go away.

At least it sounds like its getting better. I have it on my scalp, too; I have a lot fewer blisters than I used to, but there are some stubborn spots still. arggg!

In Dr. Peter Greenes' book "Celiac disease, the hidden epidemic", he says something about how DH can flare up for no discernable reason sometimes. I've had the same experience where i think that maybe I got glutened because the DH is getting more active, and itchy, but I'm not getting all the other symtoms that I get when I get glutened for real.

Keep doing what your doing if its getting better, and isnt as widespread as it was before.

I had very quick results when I dropped the iodine,It was noticable in 2 days! I use kosher salt, which has no iodine, or no salt at all. also check your multi-vitamin, they usually contain iodine.

[cahill]

now this is quite a conundrum- to have Celiac & DH- AND possibly a Hypothyroid... OY

yep ,that would be me , Celiac's, DH ,hypothyroidism and osteoporosis,, any suggestions

i also am in the process of eliminating soy, ...the only grains i am eating currently is rice and corn,,,,,,,,,,,,,please ,please tell me corn is OK

[cassP]

yep ,that would be me , Celiac's, DH ,hypothyroidism and osteoporosis,, any suggestions

i also am in the process of eliminating soy, ...the only grains i am eating currently is rice and corn,,,,,,,,,,,,,please ,please tell me corn is OK

the "official" word is that corn does not affect celiacs. BUT many of us have issues with corn, sorry... but you might be okay.

i try to keep my corn to a minimum... only in certain Gluten Free "cheats". i also think that if corn is tolerable for some... corn starch, HFCS, & High Maltose Syrup might be more problematic.

[farmgirl12]

Thanks to everyon for your posts one this subject. It has been quite helpful to me. I really am trying hard to be as gluten-free as possible, but since I am the cheif cook and bottle washer at home--2 kids and a god daughter, I do a lot of baking--very careful to have measuring cups just for my gluten-free baking ets, and don't even keep that stuff in the same supboard. I raise my own fruits and veggies, can pretty much 80% of my own things, and get my meat from my sister when I need it--they have their own farm. I almost died from thyroid disease in 1998, and had that radiated, due to that I could not lose weight and had gastric bypass in 2006, which has been extremely successful for me. I was diagnosed with graves disease as well as hasimotos thyroditis when the whole thing went down. Personally, I'm sick and tired of being sick and tired. I took myself off of Dapsone this weekend cause I just was not feeling well.

I have about 8-12 persistent sores on my scalp that just won't seem to go away--they act like they will and then they don't. I don't use any skin or laundry or cleaning products that have any form of gluten in them --and this has also helped. So--now that I only sores on my scalp and not nearly the amount that I had, all the rest on my butt, knees, feet, elbows and fingers are gone, I guess its just continuing on and being careful and eventually maybe they will subside as well.

Again, thanks so much for all the advice!

Noel

[cahill]

the "official" word is that corn does not affect celiacs. BUT many of us have issues with corn, sorry... but you might be okay.

i try to keep my corn to a minimum... only in certain Gluten Free "cheats". i also think that if corn is tolerable for some... corn starch, HFCS, & High Maltose Syrup might be more problematic.

I have found that High Fructose Corn Syrup is a BIG problem for me so i have eliminated it ,,,man that is hard and i pretty much limit my corn to plain corn and corn tortillas

[rosetapper23]

I hate to give you bummer news, but your thyroid meds contain iodine--there's no way around it. When I developed Hashimoto's (form of hypothyroidism common in people with celiac) three years ago and began taking meds for it, I broke out in a rash across the top of my back. I knew that I was sensitive to iodine (and I have DH if I ingest BOTH gluten and iodine), so I called manufacturers of iodine medications all over the U.S., but I was told that iodine is a crucial ingredient and that ALL hypothyroid meds contain it. As a result, I've had to put up with this side effect since that time. I do use Clobetasol cream for two weeks followed by Apexicon cream for two weeks when I have a huge flare-up, and that keeps the itching and hives at bay most of the time.

I have noticed, though, that if I eat anything with iodine, the hives definitely get worse. I just wanted to let you know that, because of your meds, you can't be completely iodine free.

[cassP]

I hate to give you bummer news, but your thyroid meds contain iodine--there's no way around it. When I developed Hashimoto's (form of hypothyroidism common in people with celiac) three years ago and began taking meds for it, I broke out in a rash across the top of my back. I knew that I was sensitive to iodine (and I have DH if I ingest BOTH gluten and iodine), so I called manufacturers of iodine medications all over the U.S., but I was told that iodine is a crucial ingredient and that ALL hypothyroid meds contain it. As a result, I've had to put up with this side effect since that time. I do use Clobetasol cream for two weeks followed by Apexicon cream for two weeks when I have a huge flare-up, and that keeps the itching and hives at bay most of the time.

I have noticed, though, that if I eat anything with iodine, the hives definitely get worse. I just wanted to let you know that, because of your meds, you can't be completely iodine free.

gggrrrrreeeeeAAAAAAATTTTTT... what the f r we supposed to do, if we have Hypo AND DH ??? just deal with it???

OY

i know im jumping the gun... havent even been diagnosed with Hypo yet... but getting blood drawn in a week (and 4 years ago my TSH was 4.5 something).. but i DO have DH

[cahill]

I hate to give you bummer news, but your thyroid meds contain iodine--there's no way around it. When I developed Hashimoto's (form of hypothyroidism common in people with celiac) three years ago and began taking meds for it, I broke out in a rash across the top of my back. I knew that I was sensitive to iodine (and I have DH if I ingest BOTH gluten and iodine), so I called manufacturers of iodine medications all over the U.S., but I was told that iodine is a crucial ingredient and that ALL hypothyroid meds contain it. As a result, I've had to put up with this side effect since that time. I do use Clobetasol cream for two weeks followed by Apexicon cream for two weeks when I have a huge flare-up, and that keeps the itching and hives at bay most of the time.

I have noticed, though, that if I eat anything with iodine, the hives definitely get worse. I just wanted to let you know that, because of your meds, you can't be completely iodine free.

Well that just stinks ,,but I do appreciate the information.. I would rather know what is going on so i can avoid as much iodine as i can, or at least know why my DH is worse at times ..

I wish i knew how to balance it all

[Swimmr]

Hi I totally understand the frustration, am going through the same thing. Apparantly DH can take up to 2 years being strictly gluten-free, CC free to really go away.

At least it sounds like its getting better. I have it on my scalp, too; I have a lot fewer blisters than I used to, but there are some stubborn spots still. arggg!

In Dr. Peter Greenes' book "Celiac disease, the hidden epidemic", he says something about how DH can flare up for no discernable reason sometimes. I've had the same experience where i think that maybe I got glutened because the DH is getting more active, and itchy, but I'm not getting all the other symtoms that I get when I get glutened for real.

Keep doing what your doing if its getting better, and isnt as widespread as it was before.

I had very quick results when I dropped the iodine,It was noticable in 2 days! I use kosher salt, which has no iodine, or no salt at all. also check your multi-vitamin, they usually contain iodine.

Are all DH sores alike?

Mine are almost like hives. They generally appear on my buttox, shoulders, and/or shoulder blades. Sometimes around my hairline or on my scalp. BUT they NEVER look like blisters. They're very red, slightly raised, and like a large mosquito bite without the welt. I find them usually because it'll itch a little, then I go to scratch and sometimes jolt myself rigid because they HURT. I have an insatiable desire to pop them every once in a while even though they don't. Usually takes two to three weeks to completely disappear. I get them when I've had soy and if I get glutened. However it's been forever since I've been glutened.

Is there variation of how they appear on different people???