Lillyth

So I finally saw MY doc last week, who (thank god!) refered me to dermatologist.

The dermatoligist says I have eczema.

I told her that in all my research, I found that one of the most common things for DH to be misdiagnosed as is eczema - "So how do you know what I have is NOT dh?" I asked.

"I don't." was her reply. "But what I'm diagnosing you with today is eczema".

GGGGGGRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!

The thing is, I've had good friends with eczema. My arms look nothing like their eczema. (Though it looks like some of the pics I saw of DH).

Anyway, she gave me Betamethasone Dipropionate Cream for my "eczema".

Now my arms itch like CRAZY!!!!!

I must give credit where credit is due - my doc refered me to the right person. The dermo at least admitted she didn't know that I don't have DH. They refered me for a biopsy like I asked.

But the rest of it - especailly the creme...

Party this was just to vent, and partly to ask if anyone else here has been dx'd with eczema and been given Betamethasone Dipropionate Cream and had the insane itching after using it.

Anyone?

I never had the Dh symptoms except one spot, which was more like the eczema-looking Dh, on the back of my elbow. I then started riding my bike to school everyday and I got a breakout right where my bra is (where I sweat and the sweat doesn't dry quickly)...this break-out was the burning, itching Dh...it was terrible and I am convinced it has something to do with moisture or exercise. Just my experience...

Thank you.

Funny enough, it only did it that one time. Maybe my body was just flushing out the old gluten?

Some people have a yeast problem and they react to distilled alcohols and vinegars.

Distilled liquids (regardless of their grain of origin) are gluten-free because the gluten protein is too large to make it into the steam that makes up the liquid. It's not possible for the gluten to make it in. Unless they add some of the mash back in, it is by definition gluten free.

Here's a link Open Original Shared Link

I read through it all and something in the description triggered my "alarm bells":

"By the nature of the process, it is theoretically impossible to completely purify the components using distillation, as distillation only tends to approach purity, never reaching it. This is comparable to dilution, which never reaches purity. If ultra-pure products are the goal, then further chemical separation must be used."

I also read some of the related links too.

Anyway, long story short, from what I remember of chemistry, etc., those definitions just didn't "jibe" with what I keep hearing (reading) on this forum. So I asked my husband's best friend who is a molecular biologist who specializes in proteins (which gluten is), about the distillation process removing the gluten. According to him, IT DOESN'T!

This is not to say that it gluten is never removed by the distillation process, it can be - it is just that distillation is an imperfect process at best, and DOES NOT NECESSARILY REMOVE GLUTEN!

It can remove gluten, but it doesn't always. He said basically that whether or not the distillation process removes the gluten is a crapshoot. We have a better chance of getting gluten-free grain alcohols when we shell out for the really expensive stuff - that is essentially what we pay for when we pay for top-shelf stuff -- their distillation process...

He says if we want to chance it and try some of the more expensive grain alcohols, they have a much better chance of being gluten-free. But if we want absolute certainty, we need to educate ourselves about what kind of distillation process the alcohol maker uses, and assure ourselves that their process is intensive enough for our needs.

Just wanted to pass this along before anyone else tried a distilled grain alcohol on the basis of "all distillation removes all gluten", and ends up poisoned like my sister & I have both been...

Lilly-

You may not be able to tolerate it for some reason...however, I will mention after going gluten-free and healing it is not uncommon to find your body's reaction to alcohol changed--simply b/c your body is absorbing more. I used to be able to have several drinks and not really feel an impact...now I notice effects at one drink.

I only get problems from GRAIN alcohol. I can drink a whole bottle of wine & be fine. I had 8-10 rum drinks a month ago & was fine, it's just the grain alcohols.

My sister had ONE vodka drink and got a huge zit on her forehead less than an hour later & was so sick she couldn't go to work the next day.

I'll check out the link below tomorrow, maybe that will yield something.

To the best of my knowledge, there is only ONE commercially available potato vodka (at least available here in the city), and that is Finlandia Vodka (available at Trader Joe's). I have a good friend who owns a bar & we have gone through every vodka she carries, and NONE of them are made from potatos. I've had bad reactions to vodkas I thought were okay, but weren't.

I stick with rum. And wine.

Oh, maybe try keeping a food diary. And check for the words "made on equipment shared with wheat".

Hope that helps!

Lil

My bad - I meant: MONOPOLOWA vodka by J.A. BACZEWSKI available at Trader Joe's

Apparently the distilllation process removes the gluten. I was happy to find out that Jack Daniels was gluten-free, but have not yet been brave enough to try it again.

I must say I don't trust it. I have had reactions to every grain alcohol out there, regardless of what they say. ESPECIALLY whiskey.

(Bad enough to have a hangover and still taste the whiskey the next day, even off of one drink, and I'm NO lightweight)...

Oh well, maybe I'm either just super sensitive, or allergic to something else in grain alcohols...

For anyone who doesn't know and is reading this thread, many Vodkas commerically avalible are not made from Potatoes, but are actually grain alcohol.

To the best of my knowledge, there is only ONE commercially available potato vodka (at least available here in the city), and that is Finlandia Vodka (available at Trader Joe's). I have a good friend who owns a bar & we have gone through every vodka she carries, and NONE of them are made from potatos. I've had bad reactions to vodkas I thought were okay, but weren't.

I stick with rum. And wine.

Oh, maybe try keeping a food diary. And check for the words "made on equipment shared with wheat".

Hope that helps!

Lil

I agree with Peggy. Just make sure that they take the biopsy next to an eruption - not in the eruption.

Why next to it & not in it? (I'm going to be asking for a biopsy too, so I need to know what to ask for).

Thx,

Lil

Way before I knew about my celiac disease, my chiropractor dx'd me hypothyroid. (Which I now know is linked to celiac disease). He suggested I start eating red meat because of the lysine in it. My hypothyroid went away. He did not suggest I stick to meat eating for life, just until my thyroid straightened out.

It worked for me. (But he also told me only to get good quality red meat, no chemicals). Neiman Ranch is a great brand. In fact, I try never to eat anything else - I made the mistake of reading their guidelines, which are very awsome, but then, some of the things made me think, if they have a policy of NOT including these things in their farming processes, does that mean others DO include it? {in order to not gross anyone out on this thread, I will refrain from telling you exactly what - if you really want to know, PM me}.

Long story short, eating meat works for me. (I forgot to mention I was veggie before for year before). I would say try it, and if it works, great, if not, don't do it any more. But that's just me - I'll try anything once...

I have been healing really well and i have moved from small movements to way more regular movements but i am starting to get conserd as they seem to be coated with a white mucuse like substance that floats around the stools and on the stools like bactera or something. I had really bad green mucuse stools for about half a month until i was gluten free for about half a week then they starting looking normal but for the past 2 days alot of this white stuff is starting to show up is this normal? or should my doctor be warned?

I don't know if it's normal, but I do know I had some really weird stools. For instance the three days my stool smelled, NOT like poop, but like toasted sesame seed bagles, just when the seeds begin to burn. I just assume that any weird stuff with my stool is normal.

But that being said, maybe you should consult with your doc just in case...

Sorry I couldn't be more help!

Lil

Okay, NOW I'm confused.

I thought Whiskey was made out fo Rye!

Now I'm hearing it's gluten-free?

What gives?

I just came back from Hapkido class & noticed my rash (suspected DH), was WAY worse. As in WAY redder. More like the "nastier" pics of DH I've seen, though not with the blisters.

Does your DH act up with excercise?

(BTW, it didn't necessarily itch more, it just looked worse - I guess maybe I should do a good hard Hapkido workout right before seeing my doc, cuz she might actually listen to me if it looked worse)...

What is this "Delimex" of which you all speak?

actually- if I have my way, depending on what Ii'm making, I just crush up gluten-free cookies and add butter and sugar. I did it for cheesecake and it rocked! Doesn't take much time either

Wouldn't work so well with Chicken Pot Pie...

I ordered one from Pam's Celiac Kitchen. I haven't made it yet, so I don't know how good it is, but is it already made and it is in a little metal tray so all you have to do is pop it in the oven. Their website is www dot celiackitchen dot com.

Danke!

Will you let me know how it turns out?

I want to share will all my Celiac cyberspace friends what I found out about SOY. I thought I was getting better gluten & dairy free and replaced SOY as a major part of my diet. After almost 5 years of living gluten & dairy free I developed major THYROID problems I believe are from SOY. It is my opinion... but read for yourself and draw your own conclusions.

I welcome others throughts and views on this so we all can understand this better.

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Oh damn. This is one of those things I wish I had never seen. I mean, NEVER.

I went straight to Dr. Mercola's site, as I trust his opinions & findings - I fed my son soy formula (after he stopped breastfeeding - or more accuratly, after he continually tried to take his meals from me "to go", otherwise known as biting). I specifically kept him off of cow's milk formula, for a miriad of reasons. Now I'm worried. WHAT non-reversable effects?

Have you read the book? Can you tell me? Isn't ANYTHING safe for our kids?

AAAAAAAAAAaaaaaaaaaaaaaaaaaaaaaaaaaaaaack!

I don't like doctors, and don't trust them.

Gosh! I wonder why?

Fiddle-Faddle, try using vitamin E on your scar, it might help (it's cheaper to buy the gel caps, open them and put the liquid on your scar, than buying the 'official' scar cream).

Vitamin E ROCKS!!!!!!

My husband got his face split open sparring (martial arts). He came into the house with blood gusing everywhere, saying he needed to go get stiches. "Like hell you are!" I said. "But it needs stiches!" he said. Then I explained that while I had a vested interest in his face, ER docs do not. Long story short - no stiches, lots of Vitamin E (like 3-5 times per day minimum), and voila - NO scar. None. Nada, Zip, Zero, Zilch. Nothing. I also used to get really bad cystic acne - like the kind that leaves scars for life, and with tons of Vitamin E - so scars. I can't say enough about it. (Can you tell )

Ursula, I'm so sorry you had such a messed-up experience over all this. That really sucks - as if you weren't dealing with enough already...

Ursula,

I have a rash on my arms that looks like the one on the guys chest. It doesn't look as bad as any of the others - and it gets redder & itchier after showering. I have been wheat-free since last summer, and the rash showed up after a couple months of consuming low-gluten stuff like spelt & kamut. As soon as I cut out all gluten (within a week) the rash calmed down, but is still mildly there, though rarely itches. The doc I went to see wouldn't test me for DH - gave me some blah-dee-blah about how I obvioulsy have dry skin (I've never had dry skin in my life - nor has anyone in my family). The cream the doc gave me just made it itch WAY worse. Anyway, I am seeing my normal doc this month, but I wanted to beg your wisdom...

Do you think what I have could be DH?

(Yes, I know you're not a doctor, which means that your opinion means 100x more to me)...

On second thought - now that I've scrolled down past the first picture under "arms" - it looked exactly like the bottom two. That is, before I went gluten-free & it began to go away...

Ehrin, here is a link to a site with good images. This link brings you to images of the arms, you can click on the other images to see other parts of the body affected by DH.

Open Original Shared Link

Hope this helps.

Ursula,

I have a rash on my arms that looks like the one on the guys chest. It doesn't look as bad as any of the others - and it gets redder & itchier after showering. I have been wheat-free since last summer, and the rash showed up after a couple months of consuming low-gluten stuff like spelt & kamut. As soon as I cut out all gluten (within a week) the rash calmed down, but is still mildly there, though rarely itches. The doc I went to see wouldn't test me for DH - gave me some blah-dee-blah about how I obvioulsy have dry skin (I've never had dry skin in my life - nor has anyone in my family). The cream the doc gave me just made it itch WAY worse. Anyway, I am seeing my normal doc this month, but I wanted to beg your wisdom...

Do you think what I have could be DH?

(Yes, I know you're not a doctor, which means that your opinion means 100x more to me)...

I've tried both the Gillian's pie crust and the Natural Feast... yuck... The taste is important, more important than convenience. If it's not edible it doesn't matter how convenient it is.

Several tasty options, The Gluten Free Pantry's perfect pie crust mix, make up the whole bag (4 crusts) and freeze them... or use melted butter and crumbled gluten-free cookies (whatever ones you like) as a crust... I like Enjoy Life Foods Chocolate Chip cookies as a crust

I just tried the GFP perfect pie crust mix, and my rection was perfect? WTF? SO not perfect! What a pain in the butt! Not to mention it fell apart immediatly upon cutting into it.

My husband really liked it though - he liked the flakey-it-falls-apart-ness, though I didn't. I will see if I can find the two ready-made crusts above, rather than use GFP.

It depends on how bad they taste - sometimes convienient is better...

I hope so...

Making pie crust is SUCH a pain...

Please refernce my recent post on Open Original Shared Link topic.

I'm way too lazy to repost all that stuff on this thread too.

Check out Namaste & Gluten Solutions. While Namaste's stuff seems to "go farther", Gluten Solutions has beter variety, and cheaper prices.

What I did for my gluten-free eating is to make a list of everything I eat on a regular basis that needs ordering (for me, hot dog & hamburger buns, pizza crust), then I mad a list of everywhere I could get it & did cost comparrisons. I was very happy with how quickly I got the Gluten Solutions stuff, though of course, they are in CA too.

Sites to order from:

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Now for the sub-list AWSOME Sites to order from: (I had to break this all down somehow, so I just picked the sites that looked like I would want to order from them on a regular basis - your favorite sites may not be among these)...

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Open Original Shared Link The cool thing about this place is their facility is 100% free of any major food alggergen. In other words, there is not one speck of gluten in their facility anywhere! Yay! (They also say they try to give you more for your buck)...

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not to be cofused with...

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Open Original Shared Link Some millionaires I used to work for ship this stuff from LA to CA, in huge boxes. It's the only rice they eat. Seriously.

Open Original Shared Link At last!

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Open Original Shared Link I really like this site. A lot of things you can get from them as cheaper here, or at least the same price as through other sites. I've not seen anything more expensive. PLUS, for those of you with other food sensitivities or allergies, you can sort everything by "gluten-free", "caisen (sp) free", etc.

Open Original Shared Link Though I'm not too sure which brews are gluten-free, or if they all are. A quick phone call should clear that up.

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That's al for now - more tomorrow.

Lil

Here goes:

Info & resources:

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There's tons more. I will post more tomorow under a different heading. For noe, that's all thats inmy info/resouces bookmark folder. There were more wen I initially began the research, but these were the ones I kept.

More tomorow.

Lil

I'm not familiar with Trader Joe's brands and I have had problems with Whole Foods Brands so I don't buy them anymore. I use Heinz Ketchup--I know that's safe. However, Heinz Organic Ketchup is NOT gluten-free.

I guess I'll be buying Heinz NON-organic ketchup...

Lil

P.S. RANDOM TRIVIA QUESTION: What did the "57" originally refer to? (In the "Heinz 57 Varieties"?)

P.P.S. Thank you...

Which ketchup do you have? A lot of them are gluten-free--

Trader Joe's organic & Whole Foods "O" or "Organics" brand. They both say white viniger on them though.

I ususally buy organic, but in this case, I could do non-oranic as long as it is gluten-free. I will be stoppibng at Trader Joe's in a bit - if you could recommend a good brand available there, that would make my evening!

Lil