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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Upset, Confused, Venting, Scared & Frustrated
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102 posts in this topic

At this moment I'm so whacked out I'm not even sure I can write this & have it make any sense. So I begin......

My dh began subsiding almost the minute I began the gluten-free diet. And then I found that iodine is a huge factor in it for me so I went low iodine & it was like a miracle in 2-3 days. Beginners learning curve caused me to get cc'd twice since beginning the diet. Okay, it happens. 1 month ago I had written on a thread that I had just washed the last of the crusts out of my scalp from the last cc episode. Life was pretty good --- for about a week/10 days. Then I began to get a few itchies & a few more & a few more; my neck broke out all the way around, my side then the other side, both hands & forearms. Most of these are just the insect bite type but some are the little blisters. Most only itch a couple days. Some itch a week. Before going gluten-free it was relentless & waaaayyyyyy worse & all of them blisters that grew & scabbed etc...

There are so many little itchies now though. When some heal, others are coming; it's like a carousel. Since a month ago when I was all cleared up I have added these things to my diet: coconut oil, See's gluten-free chocolates but I didn't gorge --- just 1 per day for 4 days, Quinoa & then Amaranth this last week. When I began to break out again I researched & found the coconut has high iodine so there went the coconut oil & I quit the chocolates as well as making sure I was strict in the low iodine. But things didn't get better. I quit the Quinoa 8 or 10 days ago & the Amaranth hasn't been eaten for 4 days. I got 3 new little blisters today & a couple "bites".

I am POSITIVE I am not getting cc'd.

I know, I know, I keep telling myself that I knew going into this that dh can present whenever it darn well feels like it for as long as the antibodies are in your skin. So I shouldn't be upset. But I'm so low iodine that I couldn't get any lower!

I haven't changed any topical products --- in fact I'm still using the very same bottle of shampoo that I was using before I cleared up from the last cc.

I feel like I'm losing my mind. Am I missing something? Or is this just "normal"? Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr, whine.

Eatmeat4good --- you said you had itchies for 1 yr. & 4 months. Was it like this for you?

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I don't know much about DH. Just wanted to say- How awful for you! I hope you can get this figured out SOON.

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Read this about coconut oil: http://www.coconutresearchcenter.com/hwnl_4-1.htm

I know it is stressful and upsetting to see new sores form. I think iodine accumulates, btw. It took me a week to break out from the multivitamin.

You know, something to consider is salicylates: coconut is VERY high in sals, and I had a slight problem with it in the beginning. I seem to be ok now. I did try to be li and low sal those two weeks...which made me very very irritable. Sals are famous for contributing to skin conditions.

I guess my main question: overall, is the rash less in all ways?

I think we all have relapses. I had one the first time I ate a lot of iodine. Sushi still gets me a bit. And I swear I've got DH on my hand now which I can NOT explain except from a general ai flare.

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Oh man I so feel your pain. With this crap it is normal to be abnormal if that makes any sense...

I am coming up on gluten-free about 17 months. I still have itchy scabby places. I still get isolated blisters/itchies here and there.

Some thoughts:

1) Yes, sometimes it just goes crazy for no apparent reason. For me these episodes are getting fewer and fewer. It is hard to make the cause/effect connection because the reaction is often delayed for days. Making my dog gluten free was my final epiphany. Took me awhile to figure that out.

2) Mine seems to move around to different areas of my body. Right now it is coming up all over my back, but is getting better on my behind and arms.

3) Have you started any new medications? I took Actonel (for bones). It kicked my DH into high gear. I looked like I had acid burns all over my body before I figured it out. Many medications have some form of iodine and/or gluten in them

4) I have noticed problems with chocolate. Not sure why. Maybe even though gluten free, there is something going on in the processing maybe? When it comes to food I am finding that packaged/prepared foods can be a problem unless they come from a facility that tests each batch or a facility that is certified.

5) Irritation. If I get a burn, cut or bruise sometimes I'll get a crop of itchies.

6) Ointments and potions to get relief: It took me awhile but I figured out that I am sensitive to neomycin and bacitracin (antibiotics). I really have a problem with pramoxine (itch stopper). When I used Neosporin + Pain it was a nightmare. I recently read an article in a Dermatology E-Newsletter talking about how common it is for people to react to these things. Well gee...wish I had known. I probably prolonged my misery.

I really feel like DH has a life cycle that is not really clear to anyone. I am always amazed when a lesion that has blistered over and over for months just up and heals almost over night.

Yes...grrrrrrr :angry: and MAJOR whining from me also. Coming up on my 8th summer in long pants and long sleeves.

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Read this about coconut oil: http://www.coconutre...om/hwnl_4-1.htm

I know it is stressful and upsetting to see new sores form. I think iodine accumulates, btw. It took me a week to break out from the multivitamin.

You know, something to consider is salicylates: coconut is VERY high in sals, and I had a slight problem with it in the beginning. I seem to be ok now. I did try to be li and low sal those two weeks...which made me very very irritable. Sals are famous for contributing to skin conditions.

I guess my main question: overall, is the rash less in all ways?

I think we all have relapses. I had one the first time I ate a lot of iodine. Sushi still gets me a bit. And I swear I've got DH on my hand now which I can NOT explain except from a general ai flare.

First, thank you everyone for your replies.

Prickly, Wow! What a revelation! Thank you so much for the info. on the coconut oil. So it's in b/c it isn't after all high in iodine but out b/c maybe I need to watch sals. Talk about a mind bender.unsure.gif

Yes to your question. Overall the rash is less in all ways. But (& I know you & many others can empathize with this) in April it will be an entire year since the whole humongous outbreak happened & I've been itching ever since with very little time NOT itching. So I'm getting buggy!ph34r.gif But your relpy helps me feel better & not so insane.smile.gif

Oh & for those who may inquire ---- YES! I've been keeping a food log.

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Poor girl, sorry!. :(

I know Eatmeat4good and will email her and ask her to respond too.

These gals have given you GREAT info!

I wish I had answers for you. While I had scalp oozey sores and terrible itchies and blisters and mouth eruptions, I did not have classic DH...about the only thing celiac did not give me. :rolleyes:

Hope you get relief soon! best, IH

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Oh man I so feel your pain. With this crap it is normal to be abnormal if that makes any sense...

I am coming up on gluten-free about 17 months. I still have itchy scabby places. I still get isolated blisters/itchies here and there.

Some thoughts:

1) Yes, sometimes it just goes crazy for no apparent reason. For me these episodes are getting fewer and fewer. It is hard to make the cause/effect connection because the reaction is often delayed for days. Making my dog gluten free was my final epiphany. Took me awhile to figure that out.

2) Mine seems to move around to different areas of my body. Right now it is coming up all over my back, but is getting better on my behind and arms.

3) Have you started any new medications? I took Actonel (for bones). It kicked my DH into high gear. I looked like I had acid burns all over my body before I figured it out. Many medications have some form of iodine and/or gluten in them

4) I have noticed problems with chocolate. Not sure why. Maybe even though gluten free, there is something going on in the processing maybe? When it comes to food I am finding that packaged/prepared foods can be a problem unless they come from a facility that tests each batch or a facility that is certified.

5) Irritation. If I get a burn, cut or bruise sometimes I'll get a crop of itchies.

6) Ointments and potions to get relief: It took me awhile but I figured out that I am sensitive to neomycin and bacitracin (antibiotics). I really have a problem with pramoxine (itch stopper). When I used Neosporin + Pain it was a nightmare. I recently read an article in a Dermatology E-Newsletter talking about how common it is for people to react to these things. Well gee...wish I had known. I probably prolonged my misery.

I really feel like DH has a life cycle that is not really clear to anyone. I am always amazed when a lesion that has blistered over and over for months just up and heals almost over night.

Yes...grrrrrrr :angry: and MAJOR whining from me also. Coming up on my 8th summer in long pants and long sleeves.

Hopeful,

1) Funny you should mention the dog & gluten-free. My dog has been gluten-free since the day she arrived at our home as a pup; she's coming up on 5 yrs. old in June. I knew about dogs & gluten long before I knew about celiac & gluten. And last year I had to change her gluten-free food to another brand as her "gluten-free" food was getting cc'd (or the company was getting less reputable????). I have HER gluten issues down to a science now. I can tall right away when things aren't right. Now if I could do the same for myself.rolleyes.gif

2) Yes, it's moving around (mostly). Getting better on my sides but moving up on my arms etc....

3) I can be very, very thankful that I do not require any medications! YAY!

4) I seem to have lost my sweet tooth some years ago but once a year I DO get a craving for some chocolate ---- especially DARK chocolate. Well, it's sitting over there uneaten now & will likely stay there forever. Dang! $$$$$$ in the trash. Thank you celiac!mad.gif

I eat no packaged/prepared foods at all unless it's certified. And the only things like that I eat are nuts (unsalted), & Quinoa, Amaranth (which I'm not eating now), & some of the flours. All batch tested, certified. I read about people eating stuff like Fritos, Tostitos, & taco shells & I don't have the guts (pun intended) to even think about trying those things for a long, long time.

5) Yes, I know about irritations. Common with herpes type of skin issues. Got scrated by the dog & got some itchies there.

6) Ointments ---- I only use Orajel for the itchies & no other ointment use in process here for me.

You have some great thoughts about possibilities! Just you relating your experience helps. I know I'm not really doing things wrong & I know what I'm going through is "normal". UGH!

Thank you!

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Sals are famous for contributing to skin conditions.

Do you have any sources on this? It seems like something worth putting up so other people can check it out if they're having problems.

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Thanks IH! smile.gif

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Do you have any sources on this? It seems like something worth putting up so other people can check it out if they're having problems.

This is a product website, and while not scientific, does sum it up pretty well. http://www.mysensitiveskincare.com/salicylates.html

Here's info about symptoms: http://salicylatesensitivity.com/info3/

Here's a list of how to cope: http://www.chronichives.com/pages/lowsalicylatediet.htm

I read about Sals in relation to aggravating conditions or being "a mysterious cause". It's one of the things I considered was causing my tbd DH.

Others here and especially DH sufferers have realized sals contribute to their problems.

My dermatologist brought it up and agreed when I said I thought they might make my rash worse.

It's kind of like milk, soy, egg, etc. intolerance going with Celiac in general - sals kind of go with skin conditions.

For me, it's MSG, food colorings and maybe peppermint (which really sucks btw). Others are super sensitive to them. When I first went gluten-free sals and MSG )still not sure if they are a sal or different category) caused my rash to flare like you would imagine gluten would - now not so much.

There are studies done on some specific meds like indomethacin, which I am guessing is a sal since its an anti- inflammatory which shows it aggrivates DH. http://www.ncbi.nlm.nih.gov/m/pubmed/3994920/?i=5&from=/52970/related

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Cross contamination from oats ?

If I had to guess, and this is from consuming something instead of from topical exposure, you are getting nailed from one of your grain products that is cc'd with something else, either wheat, oats. I had to change baking soda, from a company that was "gluten free" packaged to just going back to ol' Arm & Hammer. I thought I was never going to figure that one out. :ph34r: Another thing that got me really spectacularly was cc'd corn starch in a "safe" baby powder - Holy **** :ph34r:

Otherwise, 'whadduhbouts the things like laundry detergent ? or kitchen dish soap, or for me, one of the worst things is commercial antibacterial soap in public restroom dispensers.

Oh, and the ultimate was, from my bout of really shouldn't have used "that brand of natural deodorant," was it got on my jackets and sweatshirts, sports bras, and even the clothes hangers I used for them. Pulling some of these clothes items over my head/face had some real interesting results.

~The Springtime Pets~

My dogs. They runneth in green pastures, besides the still waters. They draggeth in many detritus. They sneaketh into the hay barn, which is old and hopelessly full of straw dust besides the rats they're hunting. They lead us to antihistamines. Yeah, tho I scratch thru the Valley of Evil, thy doggie bath comforteth me.

I keep putting sheets down on the floors where the dogs lay, and then wash them frequently.

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This is a product website, and while not scientific, does sum it up pretty well. http://www.mysensitiveskincare.com/salicylates.html

Here's info about symptoms: http://salicylatesensitivity.com/info3/

Here's a list of how to cope: http://www.chronichives.com/pages/lowsalicylatediet.htm

I read about Sals in relation to aggravating conditions or being "a mysterious cause". It's one of the things I considered was causing my tbd DH.

Others here and especially DH sufferers have realized sals contribute to their problems.

My dermatologist brought it up and agreed when I said I thought they might make my rash worse.

It's kind of like milk, soy, egg, etc. intolerance going with Celiac in general - sals kind of go with skin conditions.

For me, it's MSG, food colorings and maybe peppermint (which really sucks btw). Others are super sensitive to them. When I first went gluten-free sals and MSG )still not sure if they are a sal or different category) caused my rash to flare like you would imagine gluten would - now not so much.

There are studies done on some specific meds like indomethacin, which I am guessing is a sal since its an anti- inflammatory which shows it aggrivates DH. http://www.ncbi.nlm.nih.gov/m/pubmed/3994920/?i=5&from=/52970/related

Thanks for finding all those!

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Yes Prickly! Thanks for finding all those lovely links.smile.gif

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Cross contamination from oats ?

If I had to guess, and this is from consuming something instead of from topical exposure, you are getting nailed from one of your grain products that is cc'd with something else, either wheat, oats. I had to change baking soda, from a company that was "gluten free" packaged to just going back to ol' Arm & Hammer. I thought I was never going to figure that one out. :ph34r: Another thing that got me really spectacularly was cc'd corn starch in a "safe" baby powder - Holy **** :ph34r:

Otherwise, 'whadduhbouts the things like laundry detergent ? or kitchen dish soap, or for me, one of the worst things is commercial antibacterial soap in public restroom dispensers.

Oh, and the ultimate was, from my bout of really shouldn't have used "that brand of natural deodorant," was it got on my jackets and sweatshirts, sports bras, and even the clothes hangers I used for them. Pulling some of these clothes items over my head/face had some real interesting results.

~The Springtime Pets~

My dogs. They runneth in green pastures, besides the still waters. They draggeth in many detritus. They sneaketh into the hay barn, which is old and hopelessly full of straw dust besides the rats they're hunting. They lead us to antihistamines. Yeah, tho I scratch thru the Valley of Evil, thy doggie bath comforteth me.

I keep putting sheets down on the floors where the dogs lay, and then wash them frequently.

Oh My Takala! And the plot thickens eh?

No oats here. The Quinoa is Ancient Harvest & the Amaranth is BRM. I was only eating the Amaranth while this latest episode had already been going on but decided to back off on it as well as the Quinoa anyway & sort of go back to square one so to speak.

It isn't the laundry detergent, kitchen soap & I carry safe hand wipes in my purse so I don't have to use hand soap in public restrooms. I actually use very little flour type stuff as I haven't gotten into the baking thing yet just trying to manage small steps at a time. Don't want to complicate issues --- bad enough as is. I'm still using the same bag of BRM "flour" I first began with.

I remember reading somewhere you posting recently about the deodorant on your clothes episode.

Ahhhh, & then we come to the dog. Nope, no barns of old straw but she did roll in what I can only determine must have been some skunk poo & the skunk had D! YUCK! She has gluten-free shampoo. I had to use lemon juice on her though to get the stink out & she got 2 baths! That was after we took her to the country to run. We are renting a place while we build a home & the "rules" are no dogs off leash EVER unless the yard is fenced & this one is not. Poor baby. So we take her for runs.

That's why this is so vexing to me. I've been over everything a thousand times in my mind. I think it's just stupid freaking, crappy dh doing what it does best which is make us nuts! ph34r.gif

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I am 10 months in with head to toe DH so I can really understand your dilemma. I've had 2 periods of seeming relief only to go head to toe lesions once again. It is very hard on the sanity.

I have found sals (dried fruit was the first culprit I think, coconut the second) a problem. Recently I discovered a massive problem with corn. Are you eating corn? It seems to be a more temporary effect than glutens but is very severe for me.

I sit here with itching on my hands, legs etc so remember to get on here and rant etc whenever you need. This forum has been my saviour of my sanity so don't be discouraged.. get on an talk it out with us.

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I used to have those scabs on my scalp, but I don't think that I have DH. I do get a whole bunch of other symptoms though, and I have had to be very careful about my diet. As time goes on, I have to be more and more careful. I do the food journal thing. I only add one new food per week. When I feel like I can't cut anything more out, I eat extra instead. You should cut out all the new things you added since the DH was gone, and wait for it to go away again. If it doesn't you will have to test more foods in that diet. If it does go away, then you can add those new things more carefully. Check out not only the food item, but the source. For instance, one brand of coconut oil might bother you and another one might not. They use different processing and cultivation techniques.

The worst is when you start getting symptoms from your established safe diet. Then you don't know what to cut out, and you don't know what to substitute it with. That's where the eating extra helps me. My son had DH so I have some understanding of it. There is more of a delay with symptoms and healing with him which makes it take longer to figure out. I guess I am lucky that I notice some symptoms the same day and others the next. I do lots of challenge/elimination diets for him. I can go to work late, but if he misses school he gets into real trouble with so much make up work.

I'm sorry the itching is so bad. It must drive you crazy. I hope you get it sorted out soon. You can message me for individual food concerns, but I am so crazy sensitive, I don't know if my diet would apply to you much.

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I am soooooo sorry squirmingitch! This sounds awful! The first thing that popped into my mind was the Salicylate thing that pricklypear1971 (our resident weird bird) has men mentioned. I really don't have any advice to offer other than that sadly. What made me feel better when I was feeling down was the comforting I got on this forum so hope it does the same for you.

You need extra hugs and pampering from your loved ones, and eliminating the the Sals would hopefully solve your problem. You're in my prayers!

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Yup. I'm going to have to try & eliminate sals. Sigh. Dani, I guess we'll both be eating grass along with your bunny.laugh.gif Oops! we better not do that ---- it might be contaminated with wheat seedlings!biggrin.gif

Yeh, I'm back to everything foodwise that was before I got the breakout after the clear up.

Ya know..... the truth is... dh just plain likes to TERRORIZE us. We live in terror every time we get an itchy that it's the beginning of a full blown breakout. Now, this afternoon, a blister appeared on each nipple. Now isn't that just a fine how do you do?ph34r.gif Thank heavens for benzocaine!

But here's what I don't understand ---- sals or no sals --- how can it do this when it requires iodine to present? I've been so low iodine for so long. If the coconut oil wasn't the iodine factor then iodine shouldn't be there in me. Prickly? Can you make sense of that? I'm still somewhat batty & not thinking straight. Which I hate b/c it isn't like me. I'm usually on top of things. Right now I feel really dumb.

Yes, it DOES help to talk with you all. And I'm so grateful you guys are here & that I found this board. It makes me feel better just discussing it &/or being able to rant & rave. It helps to restore my humor at least which is my #1 life survival tool. I had lost my sense of humor before I made this thread.

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For me, it's MSG, food colorings and maybe peppermint (which really sucks btw). Others are super sensitive to them.

Yes, Prickly, That's me, too. <_< All of those cause me problems: Swelling, bloating, itchiness, headaches, and they mess with my "regularity" :rolleyes: and make me feel "out of sorts". I feel like I am "swollen" inside my own skin. That is the best way to describe it. I am itchy and get sores on my scalp. UGH! I am not a grouchy person by nature at all, but I feel myself falling down in the dumps. And I realize it and think "oh crappers, what did I eat NOW??!" :rolleyes: I KNOW it is NOT gluten.

I have read tons of info about salicylates, amines, food additives, etc. and leaky guts associated with celiac and I think these foods may affect us while we are still healing. It is possible our tolerance levels for these foods is low.

FWIW, I tried the Failsafe diet for a month and as limited as I felt it was, I believe it knocked down the inflammation in me enough to help me feel better.

While I do not get the cluster of sores in DH, and I feel for those of you who do suffer from it, the GI doc tells me ANY sores/itching/eruptions are related to celiac and can come and go with stress, trace CC and other food intolerances.

To the OP:

Hon, you mention you have been CCed twice recently, and that inflammatory response will last for SEVERAL MONTHS and that may spark those eruptions and keep them active for quite some time, I would think. ( or so my doc tells me)

Hopefully, you can figure out what's what and stop this discomfort. (gentle hugs). :)

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I can't make sense of DH at all, honestly.

There are iodine and sals in everything. Well, at least almost everything. Some people are more sensitive than others - I don't know why.

I'm not sure exactly HOW the iodine interacts with iga - I've heard it described as an activator and necessary, but perhaps it's better descrIbed as an exacerbate?

http://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

http://elaine-moore.suite101.com/dermatitis-herpetiformis-a21774

I'd switch your focus from iodine to sals and see if that benefits you more. It isn't healthy to withhold iodine for long periods (at least at a near zero level). I cut mine drastically for two weeks only, then started adding back. While I still watch it (wouldn't want to eat a meal like I did at Thanksgibing, again - iodine out my ears) I do believe I'm getting at least 1000 mcg which is the high end for someone with a problem (Hashis/DH).

Coconut AND chocolate are high in sals. Grains can be, also. I don't remember the other new foods you'd added.

I know this is frustrating and painful. Hang in there. Those antibodies will fall eventually.

The real bitch about Celiac and particularly DH is that it is so ostracizing. And having a rash makes you so self-conscious and puts you in so much physical pain. I changed everything about my life to accommodate that damn rash. My clothes, my bras, my schedule, my job, my food, my hobbies. EVERY FRICKING THING. It just pisses me off.

It's hard, really hard. I know. It changes everything and then when you think you get a break it screws with you again.

Okay, enough of my vent. I had insomnia last night and feel like I'm hung over. Ugh.

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I'm so sorry I didn't see your post as I haven't been on in a few days. I got Irish's E-mail and wanted to reply though others have given you great information. My DH was awful and I had 5 to 17 lesions mostly on my face, some on the back of my neck, and behind my ears. I noticed no improvement in the appearance of the sores for months, but they did stop stinging and hurting and itching when I went gluten free.

After several months, I realized that salicylates were a problem. I indulged in a diet coke (benzoates, which sal sensitives cannot tolerate) and M&M's which are full of food coloring. I had an awful reaction with weeping oozing sores. I eliminated sals and iodine and started getting better, but anytime I would eat processed food I would have a reaction. I have never known why. Is it the preservatives? Are they using idoized salt? Finally I got to my wits end and gave up all canned food (iodine), all fruit (salicylates),and all preservatives. I have reacted to the annatto food coloring often used in cheese. I can't eat carageenan often used in dairy. It is a seaweed and full of iodine.

I gave up sals,benzoates,tartrazine, annatto, food coloring, iodine, and of course Gluten.

This did the trick. Just gluten and iodine did not. Unless it was just a matter of time anyway, and I am attributing it to sals. Either way, I am now free of DH and I don't eat any processed food except Dove chocolates. They do not cause me to react. I'm very grateful for that.

I have noticed that my DH is very senstive to Cc. My last episode was with a microwave where I warmed my tea and didn't cover it first. I got sores right away and couldn't figure it out for several weeks. The reactions to cc last for several weeks too. So here I am just one month now with no DH and I have been gluten free a year and a half.

If I had it to do over again, I would have eliminated all and I mean all preservatives, canned goods, and food colorings, and iodine and gluten all at once.

I can eat salicylates in fruit now once in a while. But sals are cumulative and I do watch my limit.

DH is maddening. I never eat out and I never will. It is so sensitive to CC that it is just not worth it.

I wonder about the nuts- are they certified gluten free? Sometimes nuts are run on the same lines as wheat and I have gotten sick from nuts that weren'tcertified.

I do want to test eating ice cream for the dairy and carageenan aspect of it, but I'm not ready yet.

Moist tea bags help relieve the pain. Or soak rags in tea if the area is larger than a teabag. I used to tape teabags to my face when my pain was really bad. I used Walgreens Pain Relieving Ointment for pain too.

Pricklypear and I were working on healing DH at the same time. We both thought sals were a culprit. I am glad to see others are finding that too. Maybe more people will get relief by watching sals too.

It was an absolute nightmare for 8 years. I have great empathy for the struggle you are going through. I don't know if there is anything helpful here but feel free to ask if you have any questions.

I hope you get relief soon and heal fast.

Incidentally Peter Greene says in his book that DH can react sometimes for no reason at all even with the strictest compliance in diet. Don't lose hope. If I can win, you can too.

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Some nuts (if not all) are high in sals. Almonds are.

I did eat a salt-free cashew butter when I was li and it was ok. But I wasn't as sensitive to all sals at that point as I suspect you are.

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Yup. I'm going to have to try & eliminate sals. Sigh. Dani, I guess we'll both be eating grass along with your bunny.laugh.gif Oops! we better not do that ---- it might be contaminated with wheat seedlings!biggrin.gif

Yeh, I'm back to everything foodwise that was before I got the breakout after the clear up.

Ya know..... the truth is... dh just plain likes to TERRORIZE us. We live in terror every time we get an itchy that it's the beginning of a full blown breakout. Now, this afternoon, a blister appeared on each nipple. Now isn't that just a fine how do you do?ph34r.gif Thank heavens for benzocaine!

But here's what I don't understand ---- sals or no sals --- how can it do this when it requires iodine to present? I've been so low iodine for so long. If the coconut oil wasn't the iodine factor then iodine shouldn't be there in me. Prickly? Can you make sense of that? I'm still somewhat batty & not thinking straight. Which I hate b/c it isn't like me. I'm usually on top of things. Right now I feel really dumb.

Yes, it DOES help to talk with you all. And I'm so grateful you guys are here & that I found this board. It makes me feel better just discussing it &/or being able to rant & rave. It helps to restore my humor at least which is my #1 life survival tool. I had lost my sense of humor before I made this thread.

I guess we're both having glasses of water for breakfast tomorrow!

Maybe our mental state also effects the DH.. like extra stress might help the outbreak develop. I know I was stressed out of my mind for missing tomorrow's deadline.. So I think it's important for us to remain ourselves. It is really great that we can come vent here specially when our family members just can't hear another word about gluten, and we can't stop talking or thinking about it :-P I know what you mean about maintaining our sense of humor. When I first started here and otherd were joking around in their posts, I was actually having difficulties knowing how to respond, but it is important to keep a positive attitude which is why they do it.

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I know what you mean about maintaining our sense of humor. When I first started here and otherd were joking around in their posts, I was actually having difficulties knowing how to respond, but it is important to keep a positive attitude which is why they do it.

I think a positive attitude and humor is vital to recovery (they are known adrenal gland boosters and stress-busters) and I imagine that at first, some of us seem irreverant or sarcastic or even bold in some things we say. But the truth is, this safe place and these wonderful & sympathetic people? This keeps all of us sane.

And NO ONE GETS IT like we do. You have to have walked in the same shoes to GET IT.

The same itchy, bloated, scabby, tired, grouchy, foggy, sleepless, anxious, bitchy, shi*ty, tearful and fearful shoes.

Venting is allowed, anger is tolerated, yes....but in time, laughter is encouraged because there is no point in languishing in gluten-induced hell. We already spent enough time in there, yes? yes! :) I cried myself a river when I was ill and in pain, but I never forgot how to laugh. WE have to laugh or we wither and die.

I used to say to the veterans on here: "I want to be where you are--on the "other side". :) I am almost there myself and I want you to know, you will get here, too. One foot in front of the other. Hang tough.

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How ironic.

I drank a diet coke earlier today thinking I may be able to tolerate one by now. That was early today before I read or posted.

It wasn't gluten or iodine or anything.

I have a new blister on the back of my neck. After one month with no sores at all.

I sure hope it stops there. No more diet cokes.

And I forgot to mention that sunshine is a disaster for my DH.

Any time my skin is exposed to the sun, I get worse.

Many posts on this in the DH archives.

Just be aware of the sun too. It was hell for me.

Niacin seems to help my sores tremendously. I take the kind that makes you flush and I like the feeling and also think it helps my DH.

Wikipedia says there is a treatment for DH that includes niacin and tetracycline. I told my Dr. I wanted to try it. He said that was fine and prescribed the tetracyline. However, then my DH healed so I didn't actually try it. Yet.

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    • Week late aftershock!?
      I had a similar problem, I was glutened after a meal out at the beginning of April and am still experiencing problems, obviously not as bad now, but bad enough.  I have also become intolerant to  xanthan gum since, which cuts down the foods I can eat even more. I'm already intolerant to dairy, soya, and a whole lot of other stuff.  Cyclinglady is right about the auto-immune disorders, and I've noticed I have similar problems to her.  I too, eat easy to digest foods until the glutening symptoms pass. The sinus infection might also be a reaction to the glutening, it effects people in different ways.
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    • celiac disease is psychosomatic
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