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Going Crazy!

Teachndiva

By Teachndiva
in Dermatitis Herpetiformis

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Teachndiva Newbie
Teachndiva
Posted

I must be doing something wrong because I'm still itching - after 6 months of being totally gluten free. I started on Dapsone 4 months ago. I'm still getting outbreaks - although minor - and still itching. Head, fingers, chin, ear, eyes - haven't worn makeup in months! Not sure what else to do. I was first diagnosed nine years ago - was treated - and had NOTHING since - till this spring! Any other treatments, information? I am also diabetic - so my dietary concerns (don't have celiac) are getting quite annoying. Any suggestions will be appreciated. 

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Ennis-TX Grand Master
Ennis-TX
Posted

First were you tested for celiac? IS this rash DH? In case of a DH rash they have to take a biopsy from a clear spot next to one of the lesions. Those with DH sometimes do not show up on other celiac test,

Other thoughts what about your shampoo? Body wash? Did you have any recent work done in the house with plaster or drywall? Is this a allergic reactions or directly linked to celiac?

Your concerns about diabetic friendly gluten-free options confuse me. I am ketogenic gluten free. Meaning I do not eat carbs, or sugar. It is quite easy, while many gluten free processed foods do are really high in starches, there are plenty that are low carb and diabetic friendly. Miracle Noodles makes, noodles, rice, pasta, ready to eat meals all gluten free and low-zero carb. Julian Bakery makes a low carb, gluten free bread. Califlour makes low carb pizza crust, and I know of several companies other then my bakery that makes low carb ketogenic muffins, cookies, and cakes that are diabetic safe.

Victoria1234 Experienced
Victoria1234
Posted
11 hours ago, Teachndiva@msn.com said:

I am also diabetic - so my dietary concerns (don't have celiac) are getting quite annoying

I'm confused. You don't have celiac? Have you had a blood test or biopsy? Have you been diagnosed with DH? 

What were you diagnosed with 9 years ago? If it was celiac or DH why have you only been gluten-free for 6 months?

We need a better picture of what's going on here to help you more successfully.

squirmingitch Veteran
squirmingitch
Posted
33 minutes ago, Victoria1234 said:

I'm confused. You don't have celiac? Have you had a blood test or biopsy? Have you been diagnosed with DH? 

What were you diagnosed with 9 years ago? If it was celiac or DH why have you only been gluten-free for 6 months?

We need a better picture of what's going on here to help you more successfully.

This is exactly what I'm wondering also.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

Hi and welcome.

We're blood work and biopsy both negative? Are you NCGS? 

For decades I was missed and then now after my gluten-free self imposed time and subsequent gluten challenge (after finding a Dr willing to test me etc ) it astounds me how I was missed no lack of trying on my part. By 2008 I got to the your crazy it's in your head - "level " of the "celiac challenge diagnosis game" which meant I made the rounds on the Dr circuit too much and I annoyed them all with my perceived  problems.

Is it possible you have another intolerance? I believe I have  had DH, but not diagnosed officially.  I have had various skin issues. I have in my lifetime had hives, eczema, keratosis pilaris, contact dermatitis, shingles ( more than once -which I now suspect was DH) , Puppp rash after child birth/delivery ( which I now really suspect was full on no holds barred DH after seeing other members photos on this site. (biopsy never taking- Dr said it puppps, it's not a big deal, here's your cream) if she could only have been in my body -one would not be so dismissive I believe.

prior to 2016 during the time I was self imposed gluten-free (yes not suggested but some of our paths just proceed that way) if I would get cc or small amount of flour (someone thickened sauce with etc) I would get itching below my skin with out a rash actually appearing. It feels like it's above my muscles, but below my skin.  The amount was enough for my body to react but I didn't full on flare with a skin manifestation. I get the itching in my former flare spots of my prior skin issues particularly my gi/torso , upper back, back of arms, elbows, hands particularly upper knuckles, and lower back pain accompanies.

In the past 3 weeks itching reappeared-I left a friends house after using her restroom and soap despite washing the soap off well on the way home my hands became slightly swollen pink itchy and I had 2 symmetrical matching bumps on each hands upper knuckles before I arrived home 15 minutes later. Same thing occurred at bowling alley the other day from their soap but no bumps appeared. I drink a lot  of water to try to help my body process the irritant and try to restore order.

Last week I got upper back pain from strawberries (a signal of my body is reacting to a new intolerance) and is saying don't eat that. if I ignore this command arthritis  like joint and muscle pain is coming for me next.

so while I know I can't have gluten, milk, or corn, corn derivatives, now strawberries are out. A few months back I couldn't consume orange juice  or potato, but I now can eat an orange and a baked potato with earths balance on it.

Food diaries help, rotating foods, and listening to your body is the best one can do to Suss out the culprit. My immune system is still quite upset from my 2016 gluten challenge , very irritable, highly reactive.

As the veterans here coached me on intolerances . They explained they can randomly pop up for celiacs. I either did not notice them before or my challenge so ticked of my body it's letting me have it.

For now I added no strawberries to my list ( good thing strawberry season is over . My children have eaten a lot of berries this summer so it's possible my preping and handling daily made an immune irritant even though I didn't consume them. My immune system was patrolling and when I eat a handful says no way. I may have to carry my own hand soap now when I leave home  because the body says so.

i have not eaten outside the home and have had my regular safe foods , but Saturday evening I got neuropathy of my lower legs, toes, and arms . That has been occurring nightly since. I do get neurological issues with gluten but to my knowledge I didn't consume any.  The only thing new was venturing out of the home and using other soap. 

Something can be sneaking in your diet or an exposure your body dislikes. Anything new is where I'd start.

I wish you comfort soon. 

Good luck

Update : my recent neuropathy event discovered was the gluten-free herbal tea- it contains maltodextrin from corn. Sigh 

I really wish corn was required to be labeled.

See I'm a prime example of my own post /advice-

:)

Posterboy Mentor
Posterboy
Posted
On 9/25/2017 at 12:27 AM, Teachndiva@msn.com said:

I must be doing something wrong because I'm still itching - after 6 months of being totally gluten free. I started on Dapsone 4 months ago. I'm still getting outbreaks - although minor - and still itching. Head, fingers, chin, ear, eyes - haven't worn makeup in months! Not sure what else to do. I was first diagnosed nine years ago - was treated - and had NOTHING since - till this spring! Any other treatments, information? I am also diabetic - so my dietary concerns (don't have celiac) are getting quite annoying. Any suggestions will be appreciated. 

teachndiva,

I don't personally have DH but wanted to point to a couple great threads about the topic.

And this thread

I think it might help you.

I hope this is helpful.

posterboy,

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