I Need Help Understanding

[squirmingitch]

I am self diagnosed DH. I may also be celiac. I am 54. I will start with some history:

Have been getting the tiny, intensely itchy, clear fluid filled blisters for about 4 to 5 years now. They began as 1 or 2 on my legs below my knees. Over time a few more at the time. Then began getting them other places, hands, arms, anywhere on legs. It progressed & I got them on my neck & in my scalp & finally my back, stomach & buttocks. 1 here, 2 there, like that. Then they got more intense, more numerous & the ones in my scalp oozed clear & then amber fluid. Oftentimes the blister reforms after being broken. Sometimes no blister forms & it's a raised red welt type of thing with a dot in the center as if a mosquito bite. I searched & searched online for the answer but to no avail. Then in April of this year I had a whopper of an outbreak which began on my lower back & spread up & then around my sides to my stomach from under the breasts down to pubic line. I was under massive stress due to a move & other factors so thought it was hives as I had no experience with hives either my own or anyone else's. It took about a month for it to heal. Small outbreaks then until June when left side of my neck broke out & 2 days later the right side -- another whopper outbreak. I went to an urgent care clinic still thinking stress related hives. The Dr. put me on Dexamethasone 4 mg, 2 x day (steroid) & Cyproheptadine 4 mg, 3 x day for the itching & 3 Xanax per day. The Dr. dx'd it as hives dur to nerves. I took the Dex for 4 days & it had me flying, unable to sleep as well I think as did the Cyproheptadine which also made my vision whacky. I could not tolerate those doses even though the steroid was doing it's work as far as the blisters & outbreak. I quit the Dex & cut back on the Cyproheptadine. 7 days later the blisters were coming back. So I went back on the Dex @ 1/4 tab every other day & the Cyproheptadine 1/4 the same. Still that was too much & I was flying again, unable to sleep so i cut out the Cyproheptadine & took 1/8 Dex tab every other day. That worked. 10 days & I went off it. 4 or 5 days & the rash was coming back. It's pretty much been like that. The rash often "echoes" itself in that I get it on one side of my abdomen & a day or 2 later it appears in the same spot on the other side. I get it over my left ear soon followed by it over my right ear, my lower back the same. I have scars which look like I got matching tattoos on either sides of my body.

I went online again (still) & finally in late Sept. found DH. It fit so perfectly. Nothing else fit either. Also, last year I had an abdominal CT scan for something else & it revealed a fatty liver (Celiac?) which the Dr. said was nothing to worry about. Also, for 5 or 6 years I have been having bloat which wakes me in the night. I'm so bloated that I can't bend at the waist. Like being 14 mos. pregnant. I take Gas X &/or baking soda & have to walk, pacing the house sometimes for hours before the burps & gas begins to escape both ends. Twice I have come a hair's breadth from calling 911 to go to the hospital. When I found the DH I began going gluten free. But i didn't yet know enough about it & thought I just had to cut down on it. Oh, & I was at the dentist & she saw the rash & said, "That's not hives. I've seen tons of hives & that's not hives. That looks like herpes."

October I began totally gluten free but then kept finding "hidden" glutens in things. So since mid Oct. I can now say I think I'm gluten free. Unless I find more stuff which I'm trying to make sure on things but as you know it's a daunting task.

I will not go back on gluten in order to do tests! NO, NO, NO & NO!!!!!!! Tests that may come back false neg. anyway. NO! I have begun using plain salt not iodized.

I have been reading the posts here & I have some questions:

Why not eat nuts? Why not eat dairy? Why not soy? I drink soy milk. What's with carageenan? I'm having trouble eating enough already & I'm a tiny thing -- 5'& 97 lbs. --- I can't afford to lose an oz. No shrimp?

Why do I see antihistamines mentioned as some kind of a test?

What's with the Robitussin?

And last but certainly NOT LEAST --- is there ANYTHING to help the itching? I've tried cortisone cream, witch hazel, alcohol, moisturizers, antibiotic ointment, tea tree oil, ice, you name it.

I have read about the Dapsone & I'm not willing to try it at this point. I'm not sure I could anyway. Do I understand it's in the sulfa class? If so, then I'm allergic to sulfa. Has anyone had any success with Tetracycline treatment?

Thank you

[mushroom]

Welcome to the board. There's so much in your post that I'm not sure I have the stamina to go the whole nine yards, but I will make a start..

First off, if what you have is DH, and it certainly does sound like it, then by definition you are celiac. DH is the skin manifestation of celiac. So yes, if you are not going to challenge for the testing then you must eat gluten free. The reason for dairy free initially (and this often just applies to lactose) is that the enzyme for digesting lactose is made in the damaged part of the small intestine. This coulld be responsible for your bloating and gas because the lactose will ferment if it is not digested. You may be able to tolerate hard cheese and yogurt which have cultures which digest most of the lactose.

There are plenty of dairy substitutes - hemp, almond, and rice (but not Rice Dream since many celiacs have a problem with the barley filtration process). There is delicious hemp and coconut milk ice creams.

Soy is best avoided at first until you have sorted out what foods you tolerate as it is one that many celiacs do not tolerate. You can challenge it after you have stopped reacting to things. Many of the other things you mentioned in your post are high in iodine - things like shrimp, eggs, asparagus.

Since I am not a DH sufferer I will let those that are answer those questions

Good luck with your new gluten free life. We are all here to help.

[pricklypear1971]

Ok, I'll give it a whirl.

First, google "thyca" - that is a website for a low iodine diet for thyroid irradiation. It tells you more about iodone than I can repeat.

In relation to DH -

Dairy is high in iodine due to feed and iodine used to clean equipment.

Carageenan is a seaweed derivative, which comes from the ocean, which means its high in iodine. I only found ONE milk sub without carageenan and it was so disgusting I didn't bother.

Nuts are generally fine re:DH, unless they are salted in iodized salt or sea salt or gluten.

Any ocean seafood will be high in iodone. Fresh water fish should be fine.

If it is DH it shouldn't respond to antihistimines - so its a good test. Robitissin was a post about trying to conceive , ignore it.

As far as itching - I have luck with ice packs. Corticosteroid creams may help, and some people have luck with skin analgesics. I also tried Nasalcrom cream, and it helps a bit (google chronic urticia and the recipe is there).

I also went wonky on steroids and super-duper antihistimines. My liver is a bit off, my adrenals are shot, and I have Hashimotos. And apparently I'm hypoglycemic. The DH treatment (steroids, antihistimines) did a number on me. I get it. I'm also allergic to sulfa drugs but dapsone may be different enough to try (that's what one doc told me).

Anyhoo, I had fabulous luck healing my DH using iodone withdrawal. I went cold-turkey 2 weeks, then started adding back. I don't have a problem unless I hit too much iodone with gluten then I get a warning spot.

My lesions starting healing within 3 days, and I had been gluten-free for apx. 2 months.

Ask more questions as needed and good luck!

Oh, and keep the lesions moisturized. Slap on 500 layers of lotion. I like Vanicream and Vaseline. In large amounts. Repeatedly. When lesions heal they are dry and flaky and itchy. MOISTURIZE..

And check your skin care and cosmetics for gluten, and iodine products like seaweed.

[itchy]

Hi squirmingitch:

Many of your symptoms certainly seem like they are celiac related. I was under the impression that most DH lesions had bloody fluid, rather than clear or amber. You say that you itch, but what you describe sounds more like intense stinging, which is certainly a DH characteristic.

Why do you say that you can't eat nuts? I consider seeds (eg unsalted sunflower seeds) and nuts a staple and haven't associated them with a reaction. Perhaps someone can explain.

I haven't found any topical treatment that reduces stinging, except for lotions that keep the skin moisturised. The best treatment seems to be to get the gluten out of the diet as soon as possible so that the stinging abates somewhat. I've put up with the stinging for a couple of years now. The lesions are very slow to heal, but with a very strict gluten free diet they are much, much better.

For me the gastrointestinal symptoms disappeared almost immediately upon getting the gluten to nearly zero in the diet. For me the GI symptoms were much more responsive to gluten exclusion, and much less responsive to mistakes. In other words, if I make a mistake my DH will flare, but I don't have obvious GI symptoms.

Many report success with iodine reduction. I haven't noticed an obvious response to iodine exclusion, but perhaps I am biased because I am loathe to exclude iodine due to iodine deficiency diseases among my ancestors.

Finally, there are loads of food that you CAN eat that are gluten free. I think the secret is to be open minded about changing ones diet. I avoid trying to replace gluten containing food with substitutes and I embrace a diet of food that isn't likely to have gluten, like meat, vegetables, and the like, very plain, and avoiding baked goods. I try to avoid manufactured goods or things with lots of ingredients, because that's where the risk of accidental glutening starts to increase rapidly.

.

Good luck. The good news that if it is celiac the cure is relatively straightforward. You can mess around with drugs etc if you are in a hurry, or if you are patient you can just eliminate gluten from your diet

[rosetapper23]

If you have DH, then you have celiac disease. While not everyone with celiac disease has DH, everyone with DH has celiac. There's no need for you to do a gluten challenge if you truly believe you have DH; however, you might wish to have some clear skin adjacent to a lesion biopsied by a dermatologist to make sure that what you have is DH. If your dermatologist isn't experienced with biopsying DH, make sure that he/she knows that biopsying the lesion itself will produce a negative result.

You'll find that some brands of milk are high in iodine, while others are not. I've had good luck with organic milk products. Be wary of soft cheeses, though, because many contain carageenan.

Hopefully, you've eliminated lipsticks and shampoos that contain gluten.

[AVR1962]

Another thing to look at is salicylates. You mentioned DH and I can tell you that a gluten free diet will take care of that, however look up "salicylate foods" and to see if these too could be causing you issues. If you are not eating the foods listed it is probably the DH itself that is causing the itching.

Carageenan makes me sick. I would have to do more research, however if it is from seaweed I wonder how that relates to kelp? I have had terribly skin reactions to kelp.....itching and patches of heat on the skin. Be careful, carageenan is in lactose free milk.

We all seem to have other foods we cannot eat and each causes reactions. The only way I found this out was to go gluten and dairy free initially. Then I found other foods that were bothering my system.....high fructose, guar gum, xanthun gum (in coconut milk and gluten-free products). These cause me 3 days of vertigo and digestive issues. I also stay away from salicylates, can tolerate them to some degree, however will become itchy all over if I have much at all.

[Di2011]

When it gets very bad the only relief I get is from cold/ice packs. I had nights when I use to sleep with them all over me. I had weeks of getting very little sleep !!

At the moment I am using babyoil only when I absolutely have to. I don't seem to have the reactions/dry/peeling skin like I have with other products. For the past week I've just been having a really good clean/scrub (inc. hair) under the shower without products. I won't keep this up for much longer but I've had some shocking reactions to bathroom products & lotions lately so water is my best friend for now!!

Beware of the "eczema/dermatitis" products.

I am doing a lot of reading this week to figure out how to replace the babyoil with something homemade or truly free of chemicals/fragrances/vitamin e (which has some pseudonyms) etc.

One product I tried (and failed!) was very basic / organic oils etc and the only ingredient that I suspected (and didn't "know" at the time) was Xanthan Gum:

Xanthan gum may be derived from a variety of source products that are themselves common allergens, such as corn, wheat, dairy, or soy. As such, persons with known sensitivities or allergies to food products are advised to avoid foods including generic xanthan gum or first determine the source for the xanthan gum before consuming the food.

Specifically, an allergic response may be triggered in people sensitive to the growth medium, usually corn, soy, or wheat.[3][9] For example, residual wheat gluten has been detected on xanthan gum made using wheat.[9] This may trigger a response in people highly sensitive to gluten. Some consider this to be a separate allergy to xanthan gum with similar symptoms to gluten allergy. Xanthan gum is a "highly efficient laxative", according to a study that fed 15g/day for 10 days to 18 normal volunteers.[10] Some people react to much smaller amounts of xanthan gum, with symptoms of intestinal bloating and diarrhea.

((Open Original Shared Link))

Read this two also:

https://www.celiac.com/articles/21710/1/Could-Xanthan-Gum-Sensitivity-be-Complicating-your-Celiac-Disease-Recovery/Page1.html

Open Original Shared Link ((uggghhh ))

So today I've been reading up about Guar gum (similar to xantham gum so most products contain "wheat (or form of)" "xantham gum" or "guar gum"):

Open Original Shared Link

Turns out guar gum is E-number 412:

Open Original Shared Link

So now I will make even more effort to avoid the E400 series of additives in food/drink etc!!!

Sorry.. long post .. but it has taken me months of reading & learning so I thought it might help you too.

[squirmingitch]

First I would like to thank each & every one of you for your replies & so promptly too!

Mushroom -- I know I nearly wrote a novel but I wanted to provide you guys with as much pertinent info. as I could. And I didn't think I could muster it all back up again to take it in stages. And STILL I forgot things. I thank you for your insight into the dairy/bloat issue.

I see no reason for me to do the challenge testing since it involves torturing myself with gluten which is already torturing me. I understand celiac disease is genetic. I believe my mother had it & did not know. I believe she had DH too. Starting around age 50 she began getting intensely itchy, burning bumps in her scalp which drove her crazy. And mom had a will of iron but she would succumb to scratching these things. I felt them & they were much like the raised welts I described that I get & she would "scratch them raw" as she termed it. She always said they were nerves. I believe now that it was DH making itself known. She had some stomach & GI/digestive problems also. I read there is a DNA? test to see if you have the gene for celiac. I see no reason to do more than that test. If it comes back showing the gene then all other testing is moot. Do you guys agree?

Pricklypear -- thank you for your explanations as to the dairy, seafood & iodine. I have been hypoglycemic since I was a teen. When you say "If it is DH it shouldn't respond to antihistamines - so it's a good test". I take it you mean that if I take antihistamines & the rash goes away then it isn't DH. But will the antihistamines help the itch if it is DH? Seems like a stupid question to me for me to even ask but I want to be clear.

Funny you should mention the make up as around the time the blisters first appeared I quit wearing any make up at all. It seemed I had become allergic to it as every time I wore it even for a few hours my eyes would swell & my face would itch. I also quit wearing contact lenses then because of the same reasons. I'm thinking now that those things may be linked to gluten. It would be nice to wear both again. Especially foundation as I have lots of "sun spots" on my face from spending 40 years on the southeast coast worshiping the sun & foundation works wonders to cover those up.

I would also like to mention here that I have never been prone to any bouts of depression even when I was going through the worst of menopause. But the last 2 years I have been subject to bouts of deep depression. I'm thinking this may well be gluten/celiac related.

AVR - I can't even eliminate all the salicyclate foods at this point. I wouldn't have a thing left to eat except apples & pears. I will have to deal with those foods if eliminating gluten doesn't work. I thank you for the info. though & it could have real merit.

I have to start somewhere & gluten is it. I will eliminate iodine also. Heaven knows what I'll have for breakfast. I love my gluten-free pancakes.

Didn't I read somewhere in this forum where someone said something about they had eliminated the nightshade family too? Why?

dianedliam -- Wow! I'm going to have to study all that info. in the next few days. Thank you for the links. It looks pretty scary. I'm almost afraid to read it. I can see you have done your research & appreciate that as I'm generally like that myself.

BTW--- You guys no doubt already know this but just in case...... This is a subject near & dear to my heart: Dogs are gluten intolerant. Dogs are allergic to wheat, corn & soy --- especially the glutens. I did a ton of research to find gluten free dog food & recently found my dogs gluten free, grain free food was contaminated with very high gluten counts. Short story --- feed your dogs raw that you make yourself. Why do you think so many dogs are getting cancer in the last 20-30 years? If you prepare their food yourself then you know what's going in it. You can put veggies in it, you just have to freeze the veggies first -- that breaks down the cellulose so their system can utilize the vitamins. Hard veggies like winter squash & sweet potatoes have to be cooked first.

I'm all done in this evening & am having a hard time keeping my eyes open. So I'll sign off.

[pricklypear1971]

If you see this in the morning.... You can make pancakes with egg whites and water!

Try the antihistimes and if they help, use them. DH isn't an allergic reaction so it typically doesn't go away when you take them. If they do respond to antihistimines you may look into other skin problems (although who knows...).

[squirmingitch]

I'm still here but fading fast. I'll look for reply when I get up in the am. Just sub eggwhites for the eggs equally & the same for the milk/water?

THX

[mushroom]

Lots of info is good because it helps us help you. Sometimes when we're tired late at night though, we get a bit of overload

Without doing a gluten challenge, you can always have your DH biopsied if you have a current flare. The biopsy must be taken from clear skin immediately adjacent to a lesion. Diagnosis of DH is diagnosis of celiac, since DH is its skin form. And yes, it is a genetically based disorder. However, just having the gene is not in and of itself diagnostic, since about a third of the population carry one of the two major genes associated with celiac. Possessing a gene just means that you are predisposed to develop celiac; the actual onset is usually triggered by some severe physical or emotional stress.

Celiac disease can bring on symptoms of anxiety and depression in anyone, even those not normally disposed to them. It is one of the telltale symptoms.

Can you make your pancakes with eggwhites only, or add some flaxseed and water to substitute for the egg? I know, probably not "as good as" but maybe better than nothing. Or there is egg substitute you can buy.

The nightshade family!! My nemesis Not everyone has this problem and it may not apply to you. It does to me because I have psoriatic arthritis, both of which conditions are inflammatory (in addition to celiac) and the nightshades are known to aggravate inflammatory conditions. I initially just cut back on them because of my psA, but then found I was intolerant of potatoes, then tomatoes, and peppers had never sat well with me so I eliminated the whole bunch - me, whose signature dish was ratatouille It has been a worse curse than gluten and I am still trying to compensate for the nutrients I used to get from them

And gluten free pets! I had an Abyssinian cat, the love of my life, who had terrible digestive problems, and I knew nothing about gluten then and trusted the vet as to what to feed her, and it seemed to me even then that the foods she was eating was more, and MORE grains, and I kept saying, but cats don't eat grains!! Poor, poor kitty. If only I had known what I was doing to her and why she was puking all over my rugs. I currently have a Maine Coon and she does eat gluten - a special formulation of food for her joints and for her jaw size to keep her teeth clean and I do give it to her because she was raised on it and seems to thrive on it - but I feel a bit guilty every time I do (I let hubs feed her )

I know you won't see this until tomorrow (only 4:00 p.m. here), so sleep tight and well.

[pricklypear1971]

I'm still here but fading fast. I'll look for reply when I get up in the am. Just sub eggwhites for the eggs equally & the same for the milk/water?

THX

Yep! I don't know how you make your pancakes but check your mix for carageenan and sea salt. Some do have them.

Just want to clarify on the egg whites - if you buy a carton of whites it will say 3 Tbsp. = 1 egg. In a pinch, I'd just seperate your eggs...buy whites later. Or, if you want to use two egg whites to = 3 Tbsp. go for it.

And make sure you buy 100% egg whites. There are some gross "egg white" products out there. Some actually have wheat products in them...

[Hopeful1950]

I'm a little late in replying, but last night when I read your post I was suffering right along with you. This is all so confusing isn't it!

About dogs. I put my dog on a grain free diet because her food was full of gluten and I wanted ALL gluten out of my house. She is an older dog (13) and had been suffering from stiffness and joint pain, but after changing to the grain free food she is way better. And this year when the vet checked her teeth, she didn't need a cleaning like she used to. I have suffered with severe fibromyalgia for many years, but now that I am gluten free it is mostly gone. A sure sign that I have been glutened is the old familiar fibromyalgia pain coming back and then the rash. Maybe my dog had fibromyalgia too!

I am about 16 months into trying to control my DH. 100% gluten free. Mostly iodine free (I try to get it in small amounts because I'm scared of getting thyroid issues). My lesions will react if I get a big "hit" of iodine.

I have tried dapsone and it worked wonders. Within a week my lesions were healing and the itching was gone, but I am one of the unfortunate people who gets some miserable side effects from it. I can tell you that if I could tolerate it I would be taking it. I suffered with undiagnosed DH for 8 years and now it is taking a long time to get better and I get weary sometimes. I think each person has to decide about the dapsone and thoroughly research it before trying it because it is a strong drug. The good thing is that with a strict gluten-free diet the dapsone can eventually be discontinued.

As far as skin creams, etc. go. If I have a place that I have accidentally scratched open I use Polysporin (not Neosporin and NEVER Neosporin+PAIN). Any place that is really itchy I use Desonide cream (RX) sparingly and for as short a time as possible. I hate lotions because they have so many wierd ingredients so sometimes I use safflower oil all over while I am still wet, then pat dry. Or I have a recipe I make with Vanicream. Get a glass bowl and put a blob of the cream in. Then I add some distilled water and whip with a hand mixer until it is the consistency of lotion so it is not so heavy. I make a batch about every two weeks. I split it between two bottles and keep one in the fridge because if I am really itchy sometimes I can get relief from just the plain lotion if it is cold. Don't make too much or it can spoil. Stay away from the lotions and creams that have Benzocaine, Lidocaine or Pramoxine to numb the itch. These can delay healing and when they wear off the itch is worse. I admit, I have been known to use them when I am out of my mind itching. I do carry a small tube of ointment with benzocaine just in case. I am a CFO and have found myself going crazy in board meetings. So I'll excuse myself and put a dab of ointment just to get me through. But I never use the stuff routinely.

About genetic testing. I had the testing done at a place called Entero Lab. They also do a stool test to see if you are reacting to gluten. You don't have to be consuming gluten for them to do the test. Google them. They might be your answer. I was pleased with their service. Some insurance companies might cover it.

When it comes to the gluten-free diet I keep it simple. I avoid prepared foods as much as possible and eat at home as much as possible. Even the so-called gluten-free prepared foods often have other wierd things in them that bother me(especially xanthan gum,guar gum and inulin). It seems now that my intestines aren't busy reacting to gluten, they are getting wierd about other things. My rule of thumb is no more than 3 things at once IE: grilled chicken, a vegetable and a little rice. I have actually found a few prepared foods that meet my 3 ingredient rule that are gluten-free!

That's about all I can think of right now. Good luck. Just keep researching and advocating for yourself. It will get easier as time goes by. Be patient. Although some lucky people heal quickly after they go gluten-free, DH can take a very long time to completely clear up.

[pricklypear1971]

I'm a little late in replying, but last night when I read your post I was suffering right along with you. This is all so confusing isn't it!

About dogs. I put my dog on a grain free diet because her food was full of gluten and I wanted ALL gluten out of my house. She is an older dog (13) and had been suffering from stiffness and joint pain, but after changing to the grain free food she is way better. And this year when the vet checked her teeth, she didn't need a cleaning like she used to. I have suffered with severe fibromyalgia for many years, but now that I am gluten free it is mostly gone. A sure sign that I have been glutened is the old familiar fibromyalgia pain coming back and then the rash. Maybe my dog had fibromyalgia too!

I am about 16 months into trying to control my DH. 100% gluten free. Mostly iodine free (I try to get it in small amounts because I'm scared of getting thyroid issues). My lesions will react if I get a big "hit" of iodine.

I have tried dapsone and it worked wonders. Within a week my lesions were healing and the itching was gone, but I am one of the unfortunate people who gets some miserable side effects from it. I can tell you that if I could tolerate it I would be taking it. I suffered with undiagnosed DH for 8 years and now it is taking a long time to get better and I get weary sometimes. I think each person has to decide about the dapsone and thoroughly research it before trying it because it is a strong drug. The good thing is that with a strict gluten-free diet the dapsone can eventually be discontinued.

As far as skin creams, etc. go. If I have a place that I have accidentally scratched open I use Polysporin (not Neosporin and NEVER Neosporin+PAIN). Any place that is really itchy I use Desonide cream (RX) sparingly and for as short a time as possible. I hate lotions because they have so many wierd ingredients so sometimes I use safflower oil all over while I am still wet, then pat dry. Or I have a recipe I make with Vanicream. Get a glass bowl and put a blob of the cream in. Then I add some distilled water and whip with a hand mixer until it is the consistency of lotion so it is not so heavy. I make a batch about every two weeks. I split it between two bottles and keep one in the fridge because if I am really itchy sometimes I can get relief from just the plain lotion if it is cold. Don't make too much or it can spoil. Stay away from the lotions and creams that have Benzocaine, Lidocaine or Pramoxine to numb the itch. These can delay healing and when they wear off the itch is worse. I admit, I have been known to use them when I am out of my mind itching. I do carry a small tube of ointment with benzocaine just in case. I am a CFO and have found myself going crazy in board meetings. So I'll excuse myself and put a dab of ointment just to get me through. But I never use the stuff routinely.

About genetic testing. I had the testing done at a place called Entero Lab. They also do a stool test to see if you are reacting to gluten. You don't have to be consuming gluten for them to do the test. Google them. They might be your answer. I was pleased with their service. Some insurance companies might cover it.

When it comes to the gluten-free diet I keep it simple. I avoid prepared foods as much as possible and eat at home as much as possible. Even the so-called gluten-free prepared foods often have other wierd things in them that bother me(especially xanthan gum,guar gum and inulin). It seems now that my intestines aren't busy reacting to gluten, they are getting wierd about other things. My rule of thumb is no more than 3 things at once IE: grilled chicken, a vegetable and a little rice. I have actually found a few prepared foods that meet my 3 ingredient rule that are gluten-free!

That's about all I can think of right now. Good luck. Just keep researching and advocating for yourself. It will get easier as time goes by. Be patient. Although some lucky people heal quickly after they go gluten-free, DH can take a very long time to completely clear up.

Have you tried Nasalcrom on your DH? There's a recipe on the chronic urticaria site - just Nasalcrom (or any cromolyn source) mixed with Vanicream. It would help me sometimes - depended on the stage of the lesions.

[squirmingitch]

Interesting & thanks. I will reply this evening depending if I have time. But wanted to touch base for the moment. I had a thought & I think it should have a new topic line so I am going to post it now.

Oh, yes, & the reason I have so little time these days is because we moved, bought a piece of property, are renting while we get everything together to have plans drawn up & be owner/builder (hiring subs) & we still have to go back home & get all our stuff moved here & put our house up for sale. And now I have this to deal with which is gobbling up my time in huge gulps.

Calgon --- take me awaaaaaaayyyyyyyy!

[Hopeful1950]

OMG! I forgot...one dermatologist told me to soak in Aveeno. DON'T DO IT!!!!!!!

When you said Calgon take me away I snapped!

[squirmingitch]

Thought I would post a little update & I have some more questions. Finally, as of Nov. 1 or 2, I think I've got the gluten all out of my diet unless I'm missing something. I also stayed away from soy. And I have been iodine free. When I originally posted on 11/1 I had been off the steroid & by 11/6 I had been off it for 10 days. Also by that point in time I had broken out pretty much from head to ankles with really bad places over each ear where the temples of my glasses are. I couldn't stand the itching anymore & unless I lived in a tub of ice there's no way to keep ice on all the places & the moisturizers weren't doing enough. So I went back on the steroid. I'm now down to 1/8 every 3 days & will try to taper off slowly so I don't get a rebound (hopefully).

I am making the gluten-free, dairy free pancakes & they are good & then some mornings I have hash browns for breakfast. But WHAT do you guys eat for breakfast?????? I know I will get sick of pancakes if I keep having them every morning! The gluten-free (Schar) bread has soy so that's out. Oatmeal is out. Rice Chex are out as they are most likely CC (plus that only holds me for about an hour). What do you guys do about bread?

Breakfast is the worst for me to try & figure out. But I'm also having troubles getting enough to eat in general. I have always been one who has an unbelievably fast metabolism & need to snack between meals. Now it seems even worse. I'm always hungry except for about 1/2 hr. after I eat a meal. I get shaky if I don't get some food in me. I've stocked up on fruit for snacks but they don't hold me for long. Can you guys give me some tips?

PS. Have checked all my shampoo & everything topical I use to make sure it's all gluten-free. Even my haircolor is gluten-free.YAY!

[pricklypear1971]

Yes, breakfast is hard low-iodone.

I scrambled egg whites and ate them with gluten-free toast, or on a bed of refried beans, on hash browns (or cube some potatoes and roast them, refrigerate, take them out for breakfast), or seasoned with Tabasco or salsa.

You can do gluten-free, milk-free, egg white only pancakes... Add protein on the side. I ate lots of apples eith breakfast since they have lots of fiber.

I went through a hypoglycemic stage-I mixed veggies with cold cuts or any veg or bean, or high fiber nuts. Fiber really helps me keep blood sugar steady. Apples and grapes were the only fruits I could eat, in small amounts.

[squirmingitch]

Maybe I'll have to try the scrambled egg whites on hash browns or refried beans. Gads, I DESPISE egg whites!!!!!! But maybe I can get them down the way you suggest.

I have been doing the egg white, water pancakes but worry I'll get sick of them if I eat them all the time.

What gluten-free bread do you use? I seem to have been doing better without the dairy & soy. I did have some gluten-free toast this morning & now I've been bloated since after lunch. I think the soy is affecting me but no way to be sure.

Nuts --- going to put them on the grocery list right now.

[pricklypear1971]

I've tried a variety of breads but I like Udi's white sandwich the best. Otherwise, anything "French".

The other thing is gluten-free sausage, potato scrambled in a pan, then pour the whites on top and cook till set. Anything to disguise the egg whites. I cringe when I see them, too. Especially after the iodone thing. Ugh.

Also, do a scramble of egg whites and veggies - spinach, bell peppers, etc,. again, anything to hide the egg white taste.

[squirmingitch]

So I take it you love egg whites as much as I do!

Thanks for the suggestions. I'll give it a whirl.

[Roda]

Who says you have to eat breakfast food for breakfast? My kids get sick of the same ol things, so as long as it is something decent, I will let them eat whatever. Sometimes it's traditional breakfast foods, leftovers from supper or something we made up. Just the other morning my 6 year old wanted a sandwich wrap. The wrap was a crepe and he had lettuce, cheddar cheese, ham, turkey and genoa salami with mustard. YUM! We eat alot of rice cakes with natural peanut butter, nutella, humus, and cheese with ham or peperoni. Pocono brand cream of buckwheat is good sprinkled with brown sugar and homemade almond milk.

Here is a bread recipe that might work for you. I actually have made this several times and considering it is vegan, dairy, soy and egg free it was pretty good.

Open Original Shared Link

[squirmingitch]

Thanks Roda. I was just thinking about making my own bread & wondering how many recipes I would have to go through to happen upon a decent one.

I hear you about the other foods for breakfast & I've never been one to stick to rules however I'm usually saving the leftover for lunch or snacks.

I have never had cream of buckwheat. In fact I'm not sure I've ever heard of it. But it sounds very intriguing! One of my favorite comfort foods was cream of wheat. So you just may have found me a fix for that craving. Thanks!

[Roda]

Thanks Roda. I was just thinking about making my own bread & wondering how many recipes I would have to go through to happen upon a decent one.

I hear you about the other foods for breakfast & I've never been one to stick to rules however I'm usually saving the leftover for lunch or snacks.

I have never had cream of buckwheat. In fact I'm not sure I've ever heard of it. But it sounds very intriguing! One of my favorite comfort foods was cream of wheat. So you just may have found me a fix for that craving. Thanks!

Your welcome. The Pocono cream of buckwheat is my oatmeal replacement. I am very intolerent to all oats even gluten free oats and cross contamination from them. I truely believe I have Avenin-sensitive enteropathy. Avenin is the protein in oats. I was strictly gluten free for a year when I started having problems. I had a repeat EGD that showed I had esophagitis, gastritis, gastric ulcer and duodenitis(villi were intact, before there was villous atrophy). I attribute most if not all of my problems to the ingestion of gluten free oat contaminated products (I knew I couldn't eat the oats, bad reaction, but never gave the cc a thought until then). There have been some more mistakes along the way with possible oat contamination, but all in all I'm doing good now.

I hope the bread experiment goes well for you.

[squirmingitch]

Roda, I'm very glad to hear you're doing well now. I'm learning this disease affects us in so many ways & limits our food choices beyond the original scope we first think. I know I'm heading down the road to finding out what affects me & what doesn't. I think I've discovered a problem with soy for myself. Had toast which has soy in it yesterday morning & this morning & had bloat both days whereas since I have been shunning dairy, soy & iodine for about 10 days I had not been getting any bloat. Now I will not have that bread & see what happens the next 4 or 5 days. I hope I will be able to go back to dairy eventually even if in protracted amounts.

And at first I was really excited to find so many "gluten free" foods out there only to learn further about CC & the like. I have decided it's probably easiest & safest to get down to basics where food is involved & for the most part just prepare all my own foods. Fruits, veggies, meats & nuts with select dairy (if I can)& safe grain such as buckwheat.