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Dermatitis / Celiac Sprue

chrissygirl0668

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chrissygirl0668 Rookie
chrissygirl0668
Posted

Hi all, need help, advice and guidance to the herm/dermitit/celiac sprue. Apparently, I was born with it; however, I am almost 42yrs old and it just surfaced within last two years. Took a bad fall and wound up having two back surgeries. Didn't appear after the first surgery, second surgery (lower lumbar fusion... with metal and screws in my lower back) in oct. by Dec. I had all these blistery things all over the back of my forearms. Went to a dermatologist, he said it was dermititis. Gave me a prescription, with refills, for a lotion cream (2 yrs ago). After I finished using the lotion cream, (this Thanksgiving) all of a sudden I started getting these blistery things on my arms again; however, they traveled to my head, face and shoulder bones. I went in Jan. to my sister's dermatologist (thinking omg I am getting older and starting with acne) to be told, after a biopsy what I had; he immediately sent me to a gastro, had the procedure done... and whaaa laaaa. I have celiac sprue disease. Not only Celiac... but... the skin portion of it tooo. So I am new to this as of Ash Wed., of this year... anyway saw a dietician; I am also on dapsone, meds... and hydroxyz hcl 25mgs. I went to trade joes, whole foods, yada yada yada... i hate all the food, moreso the pastas. I eventually found vitacost.com (everything u need half price) however, everything I bought is gluten free; however... again... it all contains soy. I CAN'T HAVE SOY. I thought i was doing the right thing and taking meds, weekly blood drawn and I am still sick...... Someone please help me to see there is a rainbow at the end of the lining...... ALSO WHERE CAN I BUY WHEAT FREE LIPSTICK. OMG MY LIPS.. THANK YOU all for anyone who can help me..... I understand it is going to take at least a year for me to be able to know what I am doing and stop getting so upset.

here's one for you.. went out for easter dinner at a realtives', came home starving...... any help advice would be soooo appreciated......

chrissy

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itchy Rookie
itchy
Posted

Hi Chrissy,

Welcome to the club. I suspect there is no rainbow ending. You don't have much choice but to stop eating gluten, and most of us have to get rid of even the smallest amounts from our diets and anything that touches our bodies, like shampoos, etc.

There are a lot of different strategies for helping to deal with it, like taking Dapsone, limiting iodine, special creams, etc. but really there isn't any option but to dramatically limit gluten. Harder for some than for others. I haven't found it that difficult, because I already ate a somewhat paleo diet and welcomed the chance to eliminate cakes and pastries etc from my diet.

It's taken me 20 months, with some relapses in there, but I'm now almost free of lesions and the constant stinging, aching, and aching. I suspect that it will all come back with my first serious mistake.

I would have thought that taking Dapsone and eating strictly wheat free would have resulted in improvements quite quickly.

BTW, the best way to deal with eating out is to eat ahead of time and take along a gluten free snack. That way you won't be tempted to take risks because you are hungry. I've concluded that from now on eating out is a social thing that doesn't necessarily involve actually consuming much.

eatmeat4good Enthusiast
eatmeat4good
Posted

I had to limit iodine strictly for 3 months before I got any lesions healing...I had been strictly gluten free for 3 months with no healing but a little less stinging. Once I read about the iodine connection it made all the difference for me. You may be different, but any iodized salt, fish or shellfish, would cause a reaction in the skin sores just like gluten. It was really difficult but well worth it. After 3 full months of limiting iodine and being stricltly gluten free, my sores started healing and now I have just one small one left and it is healing. The iodine limiting is temporary until the antibodies go down. For some reason Iodine causes the IgA antibodies to react.

Like the above poster, I fully expect a full outbreak of lesions that last several weeks if I make the slightest mistake with gluten.

chrissygirl0668 Rookie
chrissygirl0668
Posted
  • Author

thank you for responding and helping me out. the salt was the first thing i eliminated from my household. this is hard and not much fun. like easter was first outing, and I came home starving. went to city yesterday had dinner and explained the severity of my situation and was told my food would be gluten-free and I feel like crap, blisters starting to form and the rest of the side affects. My mom, she's 70yrs old; she thinks I am being a baby and I have to do a new diet regime.. My older sister Kaje has helped me tremendously with this website shopping food, you name it she's there. I just don't feel good and really am mad I have to do this at this point in my life. A friend of my BF has a slight case of Celiac and he went last week to a actupunctuarist and says he feels so much better. I'm not into needles and don't know if I can handle it... However, after reading all other postsss... I see a lot of people are on different medicines, i never even have heard of. soooooooooooo confusing

chrissygirl0668 Rookie
chrissygirl0668
Posted
  • Author

I am trying (my hardest) to do the right thing. Still getting sick\, meds not working, etc. after reading other people's posting, some have it way worse than I do. But you know what, everyone's issues/symptoms are different. I would not wish this one anyone at all. It's very hard and confusing. I am just lost.

cahill Collaborator
cahill
Posted

A friend of my BF has a slight case of Celiac and he went last week to a actupunctuarist and says he feels so much better. I'm not into needles and don't know if I can handle it...

there is no such thing as a "slight " case of celiac. the only treatment for celiac is a 100% gluten free diet.

cahill Collaborator
cahill
Posted

I am trying (my hardest) to do the right thing. Still getting sick\, meds not working, etc. after reading other people's posting, some have it way worse than I do. But you know what, everyone's issues/symptoms are different. I would not wish this one anyone at all. It's very hard and confusing. I am just lost.

Chrissy, take a long deep breath, and know that it will get easier,really it does :)

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  • 4 weeks later...
kitchenscientist Newbie
kitchenscientist
Posted

chrissygirl-I encourage you to avoid all processed foods until you can get your skin cleared up if you still have broken skin areas. If you can eat eggs, boil up some and keep available. fortunately spring and summer are upcoming and salads and fresh vegies are available. For salad dressing squeeze some fresh lemon juice and season with sea salt if it's not agravating to you. If your skin is still blistering and has the insane itch, make a compress to go over it. I used zinc ointment as the first layer, a thin layer of vaseline for my second layer. If possible wrap or cover the area with plastic and ice it. Ice will calm down the itch and pain. A few supplements you might investigate are Quercetin and Butyeric Acid. There are gluten free lotions, body wash and shampoo products available at a healthfood store. As far as prescriptions go I personally avoid them as much as possible.

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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