Can Alcohol (pototoe Vodka ) Drinks Cause Outbreak? Help Suggestions For The Dh Rash Which Is Out Of Control?

[Guest ellyntoomey]

I had the blood test and was positive for the enezyme. Also, my sister has Celiac, but she has the gastro effects. Her intestinal tract is healed after 2 years of gluten free diet.

I am gluten free to the best of my knowledge. I have 2 drinks with Kalhua and vodka when I get home from work. I smoke New ports, but I can't beleive that cigs and a couple of drinks per night affect my DH. The vodka is potato, and i think haluha is OK, sometimes I have sprite & cranberry with it.

I just am getting health insurance so I can go to a gastro and internist to try to help myself. I am off the presdnisone, and just started dapsone again. But the rash is the worse it has ever been.

I just moved to southern Delaware, and have a new job. I need relief from this intching, need further testing to make sure I have no other allergies and to monitor my blood levels while taking Dapsone. I got Dapsone & Prednisone from a doctor in NH (he did the blood test). I am trying hard not to take the prednisone.

I am really depressed, and my skin rash is out of control. Itchy and unsightly. I have been gluten free for 7-8 months to the best of my ability. I sell real estate at a gold community and in another month, I will need to wear short sleeves and short, it's southern delaware and very hot.

If anyone has any suggestions for the DH rash, let me know. Ever since steriod use stopped, it has come back worse, knees, buttocks, elbows, back, hips and thighs.

I have tried elidel, and other creams for execma, cortisone, dapsone, anti biotics, prednisone. The only thing that kicks it is a shot every 6 weeks.

[CarlaB]

Black Russians and Cosmopolitans both tear me up even when made with potato vodka. I drink either a glass of wine or a rum and sprite now on the occassion that I drink (or a mojito if I'm at Cheeseburger in Paradise). I don't think that it's necessarily the vodka that was making me ill, rather I was not giving credit for how much stronger that type of drink is than a highball. It didn't used to bother me to have two martinis, but now it does. I think it's just the changes in my system with getting sick and healing.

Also, in the interest of healing faster, I've been trying to eat lots of things I know are good for me and avoid those I know are bad. So, stick with the cranberry with less vodka for a while, or even try some pomagranate or acai juice. You already know you should skip the cigarettes!

I just re-read this and noticed you said you had moved and changed jobs. I seem to be even more sensitive under stress. Since I'm over 40 and newly diagnosed, I can look over my life before diagnosis and see that anytime I was under stress, I had bad symptoms. When we were young and newly married and couldn't afford health insurance, I had such bad stomach problems and fatigue I couldn't get a job. Perhaps the stress is also contributing to you outbreak. You also mention you think you're gluten-free. I'd look for the hidden gluten. I've found it in unexpected places (hair conditioner for one).

Carla

[Guest ellyntoomey]

I'm sure quitting (yuk) or cutting back would be better for my intestinal walls. Alcohol is an irritant.

I can't help the stress level, it comes with selling real estate.

I was fine until 18 months ago when these symptoms (DH) started. Now it is full blown, after trying creams, dapsone, steriods etc.

I wonder if the booze causes a drop in my immune system and irritates my digestive track.

Any feedback???

[lovegrov]

I can't tell you what the alcohol might be doing to you but it is gluten-free.

Are you trying to avoid iodine, which can aggravate the DH? Are you taking enough dapsone? I've never heard of anything helping the DH except dapsone and going gluten-free.

richard

[GreySaber]

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.

[CarlaB]

True, many think Grey Goose and Belvedere are potato, but they're not. Nonetheless, the distillation process is supposed to make them gluten-free (my dad owns a bar, I'm actually a pretty light drinker myself )

Even though the alcohol is gluten-free, along with many other things we know are bad for us, I think that when you're trying to heal, it's better to give your body what it needs. Even though the bad stuff, not just alcohol and cigarettes, but also junk food, etc., doesn't have gluten, I would think your body would heal faster if it doesn't have to process all that junk, not just ellyntoomey, but all of us! That being said, I won't give up my daily Starbucks!

[Lillyth]

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

[eKatherine]

I have bought Luksusowa triple-distilled Polish potato vodka.

[Franceen]

To all who are on Dapsone: Please watch out for a rather rare, but potentially bad reaction to Dapsone:

I had a "hypersensitivity reaction" )known as DHS (Dapsone Hpersensitivity Syndrom) to Dapsone and could have died from it. I had the anemia, but not bad and was checking my blood regularly.

I went to Hawaii and simply could not eat gluten-free since I was new to it and ill-prepared. I cheated because I was so starved (waffles for bkfst, cookies at conference, etc). The DH rash FLARED very badly by the 5th day and I called my Dr. in Virginia and was told to double the Dapsone dose. (I had been taking 100 Mg once per day). The Dapsone, up until that time, was an absolute MIRACLE DRUG - rash gone completely - only scars remained and no all-over itch either. Once I started 200 Mg/day my rash got DIFFERENT and WORSE, it was a hive-like rash, with swollen, leathery skin (lichenization) and a dark brown (I'm fair complected) discoloration. Then my skin on arms and thights started exfoliating (like a burn victim) and I started getting infections and the peeling skin got very bad (and scary). My liver enzymes went crazy (I had had Hep C 40 years ago, but was totally clear of it 10 years ago). And I once again had Hepatitis. I was miserable, weak, sick, unable to eat. I immediately stopped all Dapsone and within 2 weeks was normal again except the typical DH rash got worse, continued, and is still bad, in spite of gluten-free. It flares very badly when I traveling and eating out (obviously it's hard to eat out when traveling - especially when you are with a group and THEY choose the restaurant).

They put me on Prednisone, which had worked in the past (before Dapsone), but did not really work this time. It took away the all-over itch, but has not stopped the rash from forming. I have taken Tetracycline/Niacin, to no avail.

The downside of this: It's summer and I still have to cover up head to toe. I was asked NOT TO TRY ON CLOTHING in a store yesterday because a customer had complained that I had a contagious disease (Herpes or leprosy was suggested). I was also sent to a Military Flight Surgeon ( work for military as civilian) from a meeting when a military pilot saw my rash. He (the pilot) said I should not be allowed at work as I was endangering the health of military members.

I am now using face makeup on my arms and legs to cover it up. (It has no gluten in it - or rather, at this point I don't care, I'm so disturbed over this.

I see my Dr. (allergist) tomorrow. We'll see what she says. Maybe I can go back on the lower dose of Dapsone again.

We'll see tomorrow.

[JodiC]

I had the blood test and was positive for the enezyme. Also, my sister has Celiac, but she has the gastro effects. Her intestinal tract is healed after 2 years of gluten free diet.

I am gluten free to the best of my knowledge. I have 2 drinks with Kalhua and vodka when I get home from work. I smoke New ports, but I can't beleive that cigs and a couple of drinks per night affect my DH. The vodka is potato, and i think haluha is OK, sometimes I have sprite & cranberry with it.

I just am getting health insurance so I can go to a gastro and internist to try to help myself. I am off the presdnisone, and just started dapsone again. But the rash is the worse it has ever been.

I just moved to southern Delaware, and have a new job. I need relief from this intching, need further testing to make sure I have no other allergies and to monitor my blood levels while taking Dapsone. I got Dapsone & Prednisone from a doctor in NH (he did the blood test). I am trying hard not to take the prednisone.

I am really depressed, and my skin rash is out of control. Itchy and unsightly. I have been gluten free for 7-8 months to the best of my ability. I sell real estate at a gold community and in another month, I will need to wear short sleeves and short, it's southern delaware and very hot.

If anyone has any suggestions for the DH rash, let me know. Ever since steriod use stopped, it has come back worse, knees, buttocks, elbows, back, hips and thighs.

I have tried elidel, and other creams for execma, cortisone, dapsone, anti biotics, prednisone. The only thing that kicks it is a shot every 6 weeks.

You have to also make sure that you are not using any shampoos, soaps or make-up with gluten. Alot of those products have gluten in them. Me and my kids will still break out if I am not careful.

[Lillyth]

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

[rumbles]

Black Russians contain either Kahlua or some type of coffee flavored liqueur. Kahlua has gluten in it, as do most liqueurs. As for the Cosmopolitan, it would depend on the brands of triple sec, cranberry juice and lime juice as to whether or not it was gluten free.

The manager of my local (state run) liquor store was diagnosed with Celiac over 20 years ago, - she and her staff advise that although the distillation process theoretically removes the gluten, there is an end stage step in the process that usually adds the gluten back into the end product. They led me to replace my old brand of vodka with Glacier brand vodka, which is a true potato vodka made in the U.S.

Alcohol is no different than food, - you need to check with the manufacturer to find out if it contains gluten or not. Some list it on their web sites, others you have to contact. They also modify their ingredients on occasion, so you need to recheck periodically, or if you start a new reaction for no apparent reason.

Also watch what you mix it with. Albertsons (supermarket) sent me their gluten free product listing last month, and orange juice is listed for possible contamination, with a note that trace gluten may be present on line. (Tropicana advises that their juices that are listed as 100% juice are gluten free, but advises taht products that are less than 100% juice may not be gluten free.)

[elonwy]

Potato vodkas sold in the US:

Blue Ice (Idaho)

Chopin (Poland)

Teton Glacier (Idaho)

Luksusowa (Poland)

They are all very nice, though I favor Chopin. I have been glutened by cranberry juice in the past. I also get severe Dh-like reactions to many chemicals liks detergents, though its not a gluten thing. I cannot be exposed to dyes or perfumes or my skin goes nuts. I have also gotten skin reactions after moving to a new city, because the water had different things in it and my skin freaked out for about 6 months.

I have also gotten a gluten reaction from ciggarette rolling paper, but not commercially produced ciggarettes. I smoke camels and marlboros and those don't bug me, but zig zag messes me up bad, so the paper can be made from wheat (zig zags are made from wheat).

HTH

Elonwy

[penguin]

Black Russians contain either Kahlua or some type of coffee flavored liqueur. Kahlua has gluten in it, as do most liqueurs. \

Sorry, where are you getting your information about Kahlua? Everything I've seen says it's gluten-free.

[rumbles]

Regarding gluten in Kahlua, I found out from my local liquor store, - they checked with the manufacturer. The store manager has a long history of Celiac disease, so she and her staff go out of their way to educate and guide their customers with any form of gluten intolerance. Before finding out that Kahlua had gluten in it, I purchased a bottle of Kahlua from someone there that didn't know I couldn't have gluten, when the store manager found out, she had me drive 17 miles home and bring the bottle back. Same with Irish Cream. It was a sad day. I've learned to be a lot more careful since then.

[dtabc]

I had to stop drinking cosmopolitans because I would break out in a rash before leaving the restaurant. My rash usually occurs 3 days after ingesting gluten. However, I can drink vodka and cranberry juice. There must have been something in the other stuff in a cosmo that was bothering me. Also, I haven't seen anyone mention CIROQ. It is vodka made from grapes.

[kabowman]

I make my own Kaluha - coffee, sugar, water, homemade vanilla with potato vodka, and vodka. That way, I know I am getting only potato vodka when I am in the mood for White Russian's. You only need an hour on the stove then let it sit for about a week.

[Lillyth]

I am going to reference another thread here because I thought you might find t helpful.

Open Original Shared Link

Pay special attention to posts number 30 & 33.

After I read post # 30, I decided to do my own research into the alcohol distillation process via an expert (a molecular biologist specalizing in protiens - which is what gluten is, a protien). The molecular biologist in question is a friend of mine & would definitly tell me the truth, as getting me sick would have a very bad effect on his best friend's life. (His best friend is my husband, and when I am sick, I am too sick to work - if I don't work, we make less money).

Just thought you might like to know what he said...

Lil

[penguin]

I am going to reference another thread here because I thought you might find t helpful.

Open Original Shared Link

Pay special attention to posts number 30 & 33.

After I read post # 30, I decided to do my own research into the alcohol distillation process via an expert (a molecular biologist specalizing in protiens - which is what gluten is, a protien). The molecular biologist in question is a friend of mine & would definitly tell me the truth, as getting me sick would have a very bad effect on his best friend's life. (His best friend is my husband, and when I am sick, I am too sick to work - if I don't work, we make less money).

Just thought you might like to know what he said...

Lil

It's a personal decision and if you react to it, don't ingest it, regardless of the cause.

As long as we're throwing out scientist connections, my husband is a chemical engineer, and those are the people that acutally work in the frontlines of the plants that make the alcohol. They design the plants and often help with formulations. After talking to him, and a number of other ChemE's, they that distillation *should* remove the gluten, because the gluten protein is too big for the process. If there's gluten in it, it's more likely that some of the mash was added back in AFTER the distillation process, and not from distillation itself.

Also keep in mind that most scientists will never make a definitive statement, and there is a lot of room for interpretation.

Bottom line - If it makes you sick, don't eat/drink/ingest it.

[VegasCeliacBuckeye]

Regarding gluten in Kahlua, I found out from my local liquor store, - they checked with the manufacturer. The store manager has a long history of Celiac disease, so she and her staff go out of their way to educate and guide their customers with any form of gluten intolerance. Before finding out that Kahlua had gluten in it, I purchased a bottle of Kahlua from someone there that didn't know I couldn't have gluten, when the store manager found out, she had me drive 17 miles home and bring the bottle back. Same with Irish Cream. It was a sad day. I've learned to be a lot more careful since then.

All the information I have read/seen has said thatg KAhlua was gluten free.

Also, I have never heard of a vodka company re introduing the "glutenous" material after distillation/filtration/

That would be akin to adding coffee grounds to your coffee after you make coffee (by the way, there is no chance the gluten molecules could get past the distillation process when they make the booze).

Sounds fishy to me...I am off to do some research..

https://www.celiac.com/st_prod.html?p_prodid=271

Open Original Shared Link

Open Original Shared Link

[ravenwoodglass]

Sorry, where are you getting your information about Kahlua? Everything I've seen says it's gluten-free.

I also get a gluten reaction from Kahlua, even though they say it is gluten-free. Many believe all celiacs can tolerate grain alcohols as long as they are distilled. I have found out from my own experience that is not the case.

[Lillyth]

It's a personal decision and if you react to it, don't ingest it, regardless of the cause.

As long as we're throwing out scientist connections, my husband is a chemical engineer, and those are the people that acutally work in the frontlines of the plants that make the alcohol. They design the plants and often help with formulations. After talking to him, and a number of other ChemE's, they that distillation *should* remove the gluten, because the gluten protein is too big for the process. If there's gluten in it, it's more likely that some of the mash was added back in AFTER the distillation process, and not from distillation itself.

Also keep in mind that most scientists will never make a definitive statement, and there is a lot of room for interpretation.

Bottom line - If it makes you sick, don't eat/drink/ingest it.

Fair enough.

I don't care if anyone chooses to drink stuff I react to, I just didn't want people thinking that distillation *always* removes gluten.

The *should* part is fine, since, as celiacs we know that when something says *should*, we need to excercise some caution. I was just concerned that based on what I was reading (and not just from you), my impression was that distillation always, 100% of the time, without question, removes ALL trace of gluten.

Since I found out otherwise, I just wanted to let people know it isn't 100%.

Lil

[VegasCeliacBuckeye]

I am fairly certain that the distillation process does remove all of the gluten.

The gluten molecule is too dense/large too survive the process.

People may be reacting to wheat fibers/strands/etc left in the alcohol, but the gluten is removed during that process.

In my experience, most people that I have met that have a problem with grain-based alcohols are those who are new to the disease, have multiple intolerances or highly reactive to wheat/grain.

Personally, I had problems with some distilled alcohol in the beginning, but now I have not had hardly any problems (love my Ketel One Vodka).

[Lillyth]

I am fairly certain that the distillation process does remove all of the gluten.

The gluten molecule is too dense/large too survive the process.

People may be reacting to wheat fibers/strands/etc left in the alcohol, but the gluten is removed during that process.

In my experience, most people that I have met that have a problem with grain-based alcohols are those who are new to the disease, have multiple intolerances or highly reactive to wheat/grain.

Personally, I had problems with some distilled alcohol in the beginning, but now I have not had hardly any problems (love my Ketel One Vodka).

I was going to reply to my above post anyway because I realize that it was not clear, so I'll just do that here, as I had some questions about some of the things you wrote too.

First and foremost, I am not saying that no distillation process ever removes the gluten. What I AM saying is that according to my molecular biologist friend, SOME distillation processes MAY NOT remove all the gluten. It just depends on the process, as they vary from maker to maker.

Also, according to my friend, the higher quality the alcohol, the greater likelyhood that it IS gluten free, though, as with anything, we should always check.

My sister, who is also celiac, reacted to Sky Vodka, after consuming it. We thought that alcohol was safe, so we weren't even looking for a reaction. She just had one.

I have also had prblems with distilled things, and have no other food intollerances (other than nitrates, and that is a completely different kind of reaction - the reaction I get to alcohol is definitely a gluten reaction). But then again, I react to things made on equipment "shared with wheat". (Prior to noticing that on the label).

I don't understand why people who are new to the disease would react more than someone who was not "new". Could you explain that please?

Also, why would someone react to the whaet strands or fibers if all the gluten has been removed?

I'm not trying to be all psycho & "anti-distillation" here - this all started because I have had (and my sister has had) independent from one another reactions to distilled alcohols. So then I asked my friend, because it didn't make sense as to why, if this stuff is safe, we were reacting to it. I know that various people have different levels of reactions & sensitivity. Maybe I'm just really sensitive. Maybe there is something else I am reacting to.

Again, I am not in any way saying that no one should ingest distilled things. I am simply saying that it might not, as previously reported, be 100%, always safe.

Lil

[abbiekir]

I was going to reply to my above post anyway because I realize that it was not clear, so I'll just do that here, as I had some questions about some of the things you wrote too.

First and foremost, I am not saying that no distillation process ever removes the gluten. What I AM saying is that according to my molecular biologist friend, SOME distillation processes MAY NOT remove all the gluten. It just depends on the process, as they vary from maker to maker.

Also, according to my friend, the higher quality the alcohol, the greater likelyhood that it IS gluten free, though, as with anything, we should always check.

My sister, who is also celiac, reacted to Sky Vodka, after consuming it. We thought that alcohol was safe, so we weren't even looking for a reaction. She just had one.

I have also had prblems with distilled things, and have no other food intollerances (other than nitrates, and that is a completely different kind of reaction - the reaction I get to alcohol is definitely a gluten reaction). But then again, I react to things made on equipment "shared with wheat". (Prior to noticing that on the label).

I don't understand why people who are new to the disease would react more than someone who was not "new". Could you explain that please?

Also, why would someone react to the whaet strands or fibers if all the gluten has been removed?

I'm not trying to be all psycho & "anti-distillation" here - this all started because I have had (and my sister has had) independent from one another reactions to distilled alcohols. So then I asked my friend, because it didn't make sense as to why, if this stuff is safe, we were reacting to it. I know that various people have different levels of reactions & sensitivity. Maybe I'm just really sensitive. Maybe there is something else I am reacting to.

Again, I am not in any way saying that no one should ingest distilled things. I am simply saying that it might not, as previously reported, be 100%, always safe.

Lil

No I know what you mean about the distilled alcohol

I can only drink wine or vodka that is potato vodka and even then I really wonder if I can tolerate any alcohol but wine is always the best in terms of being able to tolerate