Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten-Free For 20 Years With Rash From Hell


Simone52

Recommended Posts

squirmingitch Veteran

Oh! I forgot to say that recently I tried subbing quinoa flour for the rice flour, measure for measure, in the bun in a bowl & it turned out great! Plus, using the quinoa flour makes it much more healthy.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 73
  • Created
  • Last Reply
Simone52 Newbie

Oh! I forgot to say that recently I tried subbing quinoa flour for the rice flour, measure for measure, in the bun in a bowl & it turned out great! Plus, using the quinoa flour makes it much more healthy.

Ohhh...thank you so much!

 

Also check out www.glutenfreemakeupgal.com.  She does the work for us!  I found a line of hair products there guaranteed 100% gluten free called Surface.  

 

I'm gonna go make my lemon chicken thighs now.  Recipe from Ina Garten's, "How Easy Is That?"  She makes it with chicken breasts but I like the thighs too.

 

Make sure with the ACV that you get the unfiltered with the Mother.  (I just love that!)  I don't know if this site will allow me to recommend brands, but I use the Bragg's.  

 

Chicken is calling me!

Simone52 Newbie

You are my sister!!  No tomatoes because I was thinking that if it isn't DH it could be a reaction to something else (we are all delicate flowers, after all!)  So I am trying a serious elimination diet!  

 

I miss my dairy... I miss my BLT's.....I miss  my tuna salad!  But I am determined. 

 

I called the suicide scratch.  Then got onto this site and found I wasn't alone.

 

Gluten is evil!!

 

xo

I'm about ready to throw in the towel.  I am so frustrated.  Just when I think it's leaving and I have a day or two of serious relief a new crop appears.  And now I have the beginning of a bladder infection.  But Septra is out.  ****

 

I have been sticking to the low iodine diet faithfully.  And of course gluten-free.  I don't eat out.  I am starting to think that this isn't DH.  Perhaps tiny aliens trying to colonize in my body.

 

Sorry....I'm feeling down today.  There's not even an emoticon for what I am feeling.

squirmingitch Veteran

((((((Simone))))))) Huge hugs!

 

Okay, let's run through this again. What is the itch like? What do they look like?

Have you re-checked the labels for ingredient changes on everything you eat? 

How about all your topical products --- any ingredient changes there?

 

Do you have a good derm?

Simone52 Newbie

((((((Simone))))))) Huge hugs!

 

Okay, let's run through this again. What is the itch like? What do they look like?

Have you re-checked the labels for ingredient changes on everything you eat? 

How about all your topical products --- any ingredient changes there?

 

Do you have a good derm?

Thanks for the hugs.  I need them.  Honestly, I have changed my laundry detergent, my hair and body products, I have sent all of my pillows to the dry cleaner, I have changed my diet.  I check labels obsessively.  I don't eat any pre-packaged anything.  I even gave up bacon for goodness sake.  

 

Is there such a thing as a good derm??  My PCP said all they do when they don't know what it is is prescribe antibiotics and steroids.  I have seen two derms since this began last May. This last one initially gave me a shot and when that did nothing he said that given my history of celiac it must be that and he prescribed Dapsone.  Biopsy neg for DH but I had been on steroids.  Both with an injection and oral prednison.  The pharmacy and 3 other doctors told me NOT to take the Dapsone as I had an anaphylactic reaction to Septra.  Sulfa-based. Swollen tongue, angio-edema, hives the size of dinner plates.....a nightmare.

 

I'm not certain it's DH at all.  It just doesn't make any sense.  But then what the *bleep* is it???  Itches to the bone. Bordering pain.

 

I always know when I am going to have an outbreak because there is a pricking sensation.  As if a tiny needle poked me.  The area surrounding that subsequently reddens.  Within 24 hours there will be a cluster of little bumps.  Maybe eight or ten. They develop a tiny blister in the center and then they scab and  simply dry up.  Until the next cycle.  I have some pictures on my phone from the beginning. I just don't know how to load it to this forum.  

 

Itches like a mother.  They seem to return to the same areas.  Right now it's my left shoulder and right breast.  I will also sometimes have a random one itchy.  From beginning to end of the cycle is about 5-7 days.  When it's peaking, it is almost unbearable. I will say, that the outbreaks don't seem to be as intense as in the first month or two.  My back was covered at first.  My friends said it looked like chicken pox.  I really thought I was over the hump until yesterday.  Honestly, no one has a cleaner diet than me.  I buy organic meats and vegetables.  I cook myself.  Over the last 3 weeks I have been also on a LI diet.  I really thought I was done. I am wracking my brain to figure out what I did differently the last day or two.  Nothing.  

 

My PCP doc said she thought it could be a perfect storm of virus and auto-immune reaction.  It was practically completely gone when I saw her last week.  My immune system is definitely compromised. (thank you Celiac)  But this is new.  

 

I am probably rambling. Honestly, maybe an exorcism is in order!  I had a dream that teeny, tiny bat-like creatures were flying out of skin.  

 

Thanks for your time.  You truly are great.

 

xoxoxox

 

P.S.  Started on my scalp and nape of my neck.  It's a mystery......

Simone52 Newbie

Thanks for the hugs.  I need them.  Honestly, I have changed my laundry detergent, my hair and body products, I have sent all of my pillows to the dry cleaner, I have changed my diet.  I check labels obsessively.  I don't eat any pre-packaged anything.  I even gave up bacon for goodness sake.  

 

Is there such a thing as a good derm??  My PCP said all they do when they don't know what it is is prescribe antibiotics and steroids.  I have seen two derms since this began last May. This last one initially gave me a shot and when that did nothing he said that given my history of celiac it must be that and he prescribed Dapsone.  Biopsy neg for DH but I had been on steroids.  Both with an injection and oral prednison.  The pharmacy and 3 other doctors told me NOT to take the Dapsone as I had an anaphylactic reaction to Septra.  Sulfa-based. Swollen tongue, angio-edema, hives the size of dinner plates.....a nightmare.

 

I'm not certain it's DH at all.  It just doesn't make any sense.  But then what the *bleep* is it???  Itches to the bone. Bordering pain.

 

I always know when I am going to have an outbreak because there is a pricking sensation.  As if a tiny needle poked me.  The area surrounding that subsequently reddens.  Within 24 hours there will be a cluster of little bumps.  Maybe eight or ten. They develop a tiny blister in the center and then they scab and  simply dry up.  Until the next cycle.  I have some pictures on my phone from the beginning. I just don't know how to load it to this forum.  

 

Itches like a mother.  They seem to return to the same areas.  Right now it's my left shoulder and right breast.  I will also sometimes have a random one itchy.  From beginning to end of the cycle is about 5-7 days.  When it's peaking, it is almost unbearable. I will say, that the outbreaks don't seem to be as intense as in the first month or two.  My back was covered at first.  My friends said it looked like chicken pox.  I really thought I was over the hump until yesterday.  Honestly, no one has a cleaner diet than me.  I buy organic meats and vegetables.  I cook myself.  Over the last 3 weeks I have been also on a LI diet.  I really thought I was done. I am wracking my brain to figure out what I did differently the last day or two.  Nothing.  

 

My PCP doc said she thought it could be a perfect storm of virus and auto-immune reaction.  It was practically completely gone when I saw her last week.  My immune system is definitely compromised. (thank you Celiac)  But this is new.  

 

I am probably rambling. Honestly, maybe an exorcism is in order!  I had a dream that teeny, tiny bat-like creatures were flying out of skin.  

 

Thanks for your time.  You truly are great.

 

xoxoxox

 

P.S.  Started on my scalp and nape of my neck.  It's a mystery......

Oh, also, each little pustule blanches when pressed.  

squirmingitch Veteran

With rare exception your PCP is right about derms.

The derm who did your biopsy is an idiot. 1) you had been on steroids so it would be a wash & invalid. 2) you had been gluten-free for 20 freaking years!!!!! So it would be a wash & I doubt that even a little cc'ing would make a dh biopsy come up positive.

 

Okay, so you're allergic to sulfa. How about tetracycline?

 

Did I imagine you said you have a kidney infection now?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Simone52 Newbie

With rare exception your PCP is right about derms.

The derm who did your biopsy is an idiot. 1) you had been on steroids so it would be a wash & invalid. 2) you had been gluten-free for 20 freaking years!!!!! So it would be a wash & I doubt that even a little cc'ing would make a dh biopsy come up positive.

 

Okay, so you're allergic to sulfa. How about tetracycline?

 

Did I imagine you said you have a kidney infection now?

Beginning uti.  Drinking cranberry tea, TONS of water, cranberry pills.  Hopefully, I caught it.  Don't want another round of antibiotics.  Can't do tetracycline either.  I am a delicate flower, after all.  We are ALL delicate flowers!  I'm supposed to see the derm Monday. I don't know.  Why should I bother?  Really, really, frustrating.  I need Dr. House! I am considering a Naturopath. Am also considering drinking heavily ;)

squirmingitch Veteran

Has your dog been gluten free for years?

 

You make me laugh. Drinking heavily.....I'll join you. :lol:

 

I dunno, I think the derm is a waste of time considering your prior experience with him/her.

Geez, you can't do tetracycline either? At least last I knew, I could.

 

When did you last have antibiotics?

Simone52 Newbie

Has your dog been gluten free for years?

 

You make me laugh. Drinking heavily.....I'll join you. :lol:

 

I dunno, I think the derm is a waste of time considering your prior experience with him/her.

Geez, you can't do tetracycline either? At least last I knew, I could.

 

When did you last have antibiotics?

With the first go-round of this he (derm #1) misdiagnosed me with folliculitis.  Prescribed Septra and then Prednisone.  That was in early May this year. I had been able to take Septra before.  No problem.  Big problem this time.  My immune system is having a HUGE party!!! I'm going to try to find a good allergist/immunologist.  Meanwhile, I am trying not to rip my left breast apart.

 

What dog?  She's NOT A DOG!!  And yes, she is also gluten-free.  Believe it or not, she has Inflammatory Bowel Disease.  I thought I was going to lose her a few years ago.  Lots of tests and $ later (worth every penny) she was diagnosed.  But there is no gluten in this house for anyone ever!

squirmingitch Veteran

Okay, so the not a dog dog has been gluten-free for years also. So there's no chance you got glutened from her. ORRRRRR.... does she play with gluten eating dogs?

 

Does this present bilaterally?

 

When you say a cluster & then a blister appears in the middle --- you mean a cluster of bumps & then a blister appears in the middle of each bump right? And when they scab over do they still itch or is the itching done with at that point?

 

You eat organic veggies. Do you wash them with soap & water first? Call me paranoid but I wash all my fruits & veggies with soap & water. I can't get over the thought that someone who handled that fruit or veggie had just eaten a gluten sammich & not washed their hands & the produce is covered in gluteny fingerprints.

squirmingitch Veteran

Do you bathe the not a dog dog yourself & groom her yourself or do you take her to a doggy parlor? They could use gluten dog shampoo or a lot of them are big on oatmeal shampoo these days which we KNOW would not be safe oatmeal for us. They could spray her with perfume containing gluten or even perhaps just something you are reacting to. There's a thought. Sometimes doggy groomers use chalk or powder when grooming dogs to do certain things. I don't know what might be in the chalk or powder. ??????

Simone52 Newbie

Do you bathe the not a dog dog yourself & groom her yourself or do you take her to a doggy parlor? They could use gluten dog shampoo or a lot of them are big on oatmeal shampoo these days which we KNOW would not be safe oatmeal for us. They could spray her with perfume containing gluten or even perhaps just something you are reacting to. There's a thought. Sometimes doggy groomers use chalk or powder when grooming dogs to do certain things. I don't know what might be in the chalk or powder. ??????

Well, you ARE thinking!  I take my "dog" to a groomer.  NO perfume.  She doesn't use it at all on anyone. I'll ask about shampoo and other products but it just seems far-fetched.  Also, my groomer is very into organic and pure.  Ten years with her.  Also, she doesn't play with with dogs at all!  Really, she's just too little.  6 pounds.  Too dangerous even in play.  She had a few incidents and so we don't even bother.

 

I wash all vegetables with soap.  I wasn't thinking about gluteney fingers.... I was thinking about where the fingers and hands had been that touched it before it landed in the grocers.!! (Yuck)  I even use a tablespoon of bleach in lettuce to kill everything bad and then rinse 3-4 times.

 

I did get the name of an allergist/immunologist here.  I will call tomorrow.

 

You described the rash exactly.  Itching fades as scab appears. Blanching when pressed.  Oh dear Lord, I am so tired of it.

 

I know Celiac is truly evil and will affect every part of your life for forever.  I was told to get a wheel-chair in 1978.  Misdiagnosed. Of course!  I know that the leaky-gut syndrome has ruined my auto-immune system so this could be some weirdness from that. I am a bit of a control freak so of course, I want answers!

 

BTW...no wheel-chair.  Honestly, other than occasional joint and soft tissue flare-ups (minor) I am in great shape.  Pilates, Physical therapy with work-outs, no sugar, clean diet....I am at a loss.  And crying often. 

 

I'm not concerned about insurance.  I'm blessed there. That's why God made credit cards!!  I would LOVE IT if we could nail this!  I've even considered the fact that I feed the birds.  Reaction?  Allergy?  Who the bleep knows.....?  But I am truly loving this site. 

 

I actually found it when it began.  Scott Adams. Back in the early 90's.   Before it was this huge.  I always got e-mails.  Bought from the gluten-free mall when it first started. But being able to talk to someone (anyone) who doesn't eye-roll is more than great.  Thanks so much.  Keep the ideas coming.  I love it!  

 

How are YOU doing!?

 

xoxoxox to everyone!

squirmingitch Veteran

Bird seed! Does it have any wheat, barley or rye? Someone on one of the other forums (non dh) said something about they were getting glutened by the wild bird seed. check it out.

 

I gotta do some more brainstorming.......

 

Nickel allergy? Nickel is in watches, jewelry, even metal barrettes.

ItchyAbby Enthusiast

((((gentle hugs))))

 

Oh gosh, Simone, you and your rash sound so much like me sometimes. Mine starts the exact same way and progresses the exact same way that you describe. And I cry. A lot. It's a good stress reliever so I just let the wracking sobs wash over me. That brings me to my next point: have you been stressed? Even a little stress will seem to make me flare up. I was healing nicely for a few days and then yesterday a big hivey cluster popped up on my left flank after what had been a mildly stressful day. But like you, the itch is less intense than it was at it's worst.

 

I am a newbie at this, too so I cannot say how much I can help but I will tell you my observations and ideas

 

Like Squirmy once told me: this thing has a mind of it's own. Just when you think you have it figured out, it changes or comes back, or disappears. It's wild. But, what I have noticed is that I have started to just tolerate the fact that some days will be better than others. On the days when it flares (mine also seems to go on a 5-7 day "cycle") I just work on staying calm, not obsessing about the rash (really hard for me) and I just try to remember that it will pass. "It's not getting worse" is my mantra. (My darling S.O. covered all the mirrors in the house after finding me crying or fretting in front of them one too many times. Strangely, it helped a lot)

 

Also, it may be possible that some foods are problematic for you right now and it might take a bit more detective work before you figure it out. Prickly said that she found that asparagus and even peeled potatoes would cause her to flare up. I suspect that coconut might be an issue for me (god, I hope not!). I also started reintroducing some grains, in small amounts and that seems to have been helpful - I think I was eating too much meat or something. I dunno. It's all detective work, but like I said, I am also working on not obsessing too much, as that is also very stressful. There are some other low-iodine diet lists out there besides thyca that you might look at. The NIH has one too, and it includes a lot more than the Thyca one does. Be careful though - I found myself reading these list and feeling like all food was suspect.

 

Another thing that has been helpful for me is finding things to be absorbed in that do not revolve around eating. I am taking a sewing class (making the cutest chambray dress!) and I get in to a really good flow when focused on that. I don't itch at all during the class, which is remarkable. And, I hope to be able to use the skills to make my own super comfy clothes! I am also canning and pickling like crazy and that is fun and nurturing.

 

Did you check your toothpaste for carageenan?

 

I think you said you are drinking bone broth, yes? Are you also taking turmeric or anything else for inflammation? I am seeing a naturopath and she has me taking turmeric, in addition to some other supplements. They look at the person as a whole being. I have also been seeing a therapist and she coordinates with the naturopath to work on the stress and anxiety.

 

I hope this helps a bit. I would love to get in on the boozey love fest when I am drinking wine again! I miss summer jargaritas, too...

squirmingitch Veteran

Oh, I'm hanging in there. Frustrated. Just got out of my epsom salts bath & now not itching for a while. Trying to play catch up with everything I got behind in while I worked on selling the house.

squirmingitch Veteran

Simone..... the groomer is into organic & pure but most ppl consider oatmeal to be organic & pure. Can't tell you how many soaps I've run across containing oatmeal b/c they think it's so good for the skin. It is if you don't have dh! So check with her about the shampoo & stuff.

squirmingitch Veteran

I just ran across this:

Open Original Shared Link

she talks about using colchine for dh --- first I ever heard of that drug being used for dh. But then look up what it is & the dangers:

Open Original Shared Link   OY!

 

Then there are these:

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link            This one says in part:

 

Other, less effective treatments for dermatitis herpetiformis include colchicine, cyclosporine, azathioprine, and prednisone.[34] Ultraviolet light may provide some symptomatic relief. Cyclosporine should be used with caution in patients with dermatitis herpetiformis because of a potential increase in the risk of developing intestinal lymphomas.
 
One case report described resolution of dermatitis herpetiformis after initiation of the Atkins diet.[43]
 
Nonsteroidal anti-inflammatory drugs may exacerbate dermatitis herpetiformis; however, ibuprofen appears to be safe.[44]
 
Iodides may elicit or exacerbate dermatitis herpetiformis.
************************************************************************************************************************************************************
 
Well, we all know prednisone is not a good idea b/c the second you come off it the rash comes back with a vengeance! And how many years can one stay on prednisone????? I don thin so......
squirmingitch Veteran

Not to have this get mucked up with the drug treatments above; I post this separately.

 

For anyone who can afford it & who wants to test certain food items there are test kits available:

 

Open Original Shared Link

 

Open Original Shared Link

Simone52 Newbie

Not to have this get mucked up with the drug treatments above; I post this separately.

 

For anyone who can afford it & who wants to test certain food items there are test kits available:

 

Open Original Shared Link

 

Open Original Shared Link

Stress!??  What stress??  Let's see, my mother died last November after I had to basically kidnap her to bring her across the country to place her in assisted living.  Why kidnap?  Chartered jet and all?  Because my nephew had been financially exploiting her for about ten years.  About 1/2 million gone. Let's see, stress? then my husband and I separated after 20 years because he doesn't get the concept of no dating after marriage!  But hey!  I'm good!  I am trying to sell some property in NYC (I'm in the midwest) and I have had 2 deals fall apart.  My daughter is getting married in February.  I have been coping with post-menopausal bleeding and have to have a biopsy soon.  Ultra-sound ruled out ovarian cancer.  I am perfectly fine!  No stress.  That's just silly :o

 

And then there is the the "don't think about it".  When it's calming downing I worry that it will come back.  When it's flaring I worry that it will never go away.  But what, me worry??

 

You know, maybe if we all try to embrace this rash.  You know, love it.  Try to pretend that we love the itch and welcome it when it flares.  Oh, there you are, you sweet rash!! I've been missing you!  Reverse psychology.  Same concept with weeds.  They are only weeds because we don't want them.  I know in my heart that if I loved dandy lions and TRIED to grow them, they would disappear. We've all tried everything else!

 

So for today, hello!! darling little rash!  

 

I have an appointment with a naturopath but he can't see me until January. I am calling an allergist/immunologist today.

 

So once again, thank you all for listening and caring.  Honestly, I am too embarrassed to talk to anyone else.  I feel all whiney and "poor me"  You know, you get together with your friends and they say, "how are you?" you respond, "I'm great, thanks!"  So thanks for letting me say "the ****ing rash is back and I'm obsessed with food and feeling so blue!!" (a little blues guitar riff now!)

 

Anyway, thank you again.  I have fallen in love with all of you.

 

xoxoxoxoxo

Simone52 Newbie

Stress!??  What stress??  Let's see, my mother died last November after I had to basically kidnap her to bring her across the country to place her in assisted living.  Why kidnap?  Chartered jet and all?  Because my nephew had been financially exploiting her for about ten years.  About 1/2 million gone. Let's see, stress? then my husband and I separated after 20 years because he doesn't get the concept of no dating after marriage!  But hey!  I'm good!  I am trying to sell some property in NYC (I'm in the midwest) and I have had 2 deals fall apart.  My daughter is getting married in February.  I have been coping with post-menopausal bleeding and have to have a biopsy soon.  Ultra-sound ruled out ovarian cancer.  I am perfectly fine!  No stress.  That's just silly :o

 

And then there is the the "don't think about it".  When it's calming downing I worry that it will come back.  When it's flaring I worry that it will never go away.  But what, me worry??

 

You know, maybe if we all try to embrace this rash.  You know, love it.  Try to pretend that we love the itch and welcome it when it flares.  Oh, there you are, you sweet rash!! I've been missing you!  Reverse psychology.  Same concept with weeds.  They are only weeds because we don't want them.  I know in my heart that if I loved dandy lions and TRIED to grow them, they would disappear. We've all tried everything else!

 

So for today, hello!! darling little rash!  

 

I have an appointment with a naturopath but he can't see me until January. I am calling an allergist/immunologist today.

 

So once again, thank you all for listening and caring.  Honestly, I am too embarrassed to talk to anyone else.  I feel all whiney and "poor me"  You know, you get together with your friends and they say, "how are you?" you respond, "I'm great, thanks!"  So thanks for letting me say "the ****ing rash is back and I'm obsessed with food and feeling so blue!!" (a little blues guitar riff now!)

 

Anyway, thank you again.  I have fallen in love with all of you.

 

xoxoxoxoxo

Also, I am still loving straight ACV on a cotton ball applied directly. 

greenbeanie Enthusiast

Maybe someone has already suggested this...but could it be an IgE allergy to baker's yeast, Saccharomyces cerevisiae? (That's different than a candida overgrowth problem.) Do you have any other allergy symptoms - coughing, stuffy nose, itchy ears, swollen tongue - after eating fermented foods like vinegars, alcohol, hard cheeses, etc.? It might be worth trying to avoid all baked goods with yeast and all fermented foods for a week to see if it helps. If it does help, an allergist can order an IgE test for a baker's yeast allergy. Then again, if vinegar seems to be helping your rash, I guess a yeast allergy would be unlikely, but you never know. If you're going to get allergy testing anyway, it couldn't hurt to ask.

 

I'm a little confused about the different types of reaction to Saccharomyces cerevasiae, but research has shown higher levels of antibodies against it (ASCA antibodies) in celiac as well as in Crohn's. Three article links are below, but a PubMed search yields a lot more. ASCA antibodies seem to be different than an IgE allergy, though. Anyhow, from what I've read it sounds like either one can cause rashes (?).

 

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

I'm going down this path myself because I've had the same type of horrible, itchy rash for 30 years. I was diagnosed with eczema as a child, but the eczema creams never helped and I have scars on my arm from scratching it. Later it spread to my legs, stomach, and scalp and would cover large areas of my body for months or years at a time. It was never biopsied to check for DH because my doctors always insisted it was just stress, and now I'm gluten-free so it's too late. My celiac tests were negative even though symptoms and family history all strongly suggested celiac, so we're still trying to sort out whether I have extremely strong NCGI or whether I'm actually allergic to some food that's usually found in wheat products. My tongue swelled up during my gluten challenge and has remained swollen for the last three months even while strictly gluten-free, which is what led to the allergy testing now. Both my tongue swelling and my rash flare up several hours after eating anything with vinegar, any gluten-free processed foods with yeast (even from dedicated facilities), alcohol, cheese, dried fruit, and many ripe fresh fruits. The coughing and itchy ear symptoms are immediate, but there seems to be a delay before it worsens the rash. It will be a few weeks before I have my results, but I'll post back here later if anything useful turns up.

Simone52 Newbie

Maybe someone has already suggested this...but could it be an IgE allergy to baker's yeast, Saccharomyces cerevisiae? (That's different than a candida overgrowth problem.) Do you have any other allergy symptoms - coughing, stuffy nose, itchy ears, swollen tongue - after eating fermented foods like vinegars, alcohol, hard cheeses, etc.? It might be worth trying to avoid all baked goods with yeast and all fermented foods for a week to see if it helps. If it does help, an allergist can order an IgE test for a baker's yeast allergy. Then again, if vinegar seems to be helping your rash, I guess a yeast allergy would be unlikely, but you never know. If you're going to get allergy testing anyway, it couldn't hurt to ask.

 

I'm a little confused about the different types of reaction to Saccharomyces cerevasiae, but research has shown higher levels of antibodies against it (ASCA antibodies) in celiac as well as in Crohn's. Three article links are below, but a PubMed search yields a lot more. ASCA antibodies seem to be different than an IgE allergy, though. Anyhow, from what I've read it sounds like either one can cause rashes (?).

 

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

I'm going down this path myself because I've had the same type of horrible, itchy rash for 30 years. I was diagnosed with eczema as a child, but the eczema creams never helped and I have scars on my arm from scratching it. Later it spread to my legs, stomach, and scalp and would cover large areas of my body for months or years at a time. It was never biopsied to check for DH because my doctors always insisted it was just stress, and now I'm gluten-free so it's too late. My celiac tests were negative even though symptoms and family history all strongly suggested celiac, so we're still trying to sort out whether I have extremely strong NCGI or whether I'm actually allergic to some food that's usually found in wheat products. My tongue swelled up during my gluten challenge and has remained swollen for the last three months even while strictly gluten-free, which is what led to the allergy testing now. Both my tongue swelling and my rash flare up several hours after eating anything with vinegar, any gluten-free processed foods with yeast (even from dedicated facilities), alcohol, cheese, dried fruit, and many ripe fresh fruits. The coughing and itchy ear symptoms are immediate, but there seems to be a delay before it worsens the rash. It will be a few weeks before I have my results, but I'll post back here later if anything useful turns up.

I wonder if HRT could be the culprit in my case.

 

I am not eating anything with yeast right now.  I AM drinking red wine.  But that doesn't contain yeast.

 

I know I have a reaction to Kiwi. Itchy ears, mouth.  Also, some anchovies.  It seems that the better ones don't bother me.  But I haven't touched either of these for a few months.

greenbeanie Enthusiast

I am not eating anything with yeast right now.  I AM drinking red wine.  But that doesn't contain yeast.

 

I know I have a reaction to Kiwi. Itchy ears, mouth.  Also, some anchovies.  It seems that the better ones don't bother me.  But I haven't touched either of these for a few months.

 

Your comment about wine was actually what originally made me think of yeast. My understanding is that yeast is in all fermented foods and alcohols - it's what makes them ferment. It's not an added ingredient the way yeast is in baked goods; it occurs naturally on grape skins, so it wouldn't be listed as an ingredient on wines or vinegars (or on anchovies pickled in vinegar - or are they just packed in oil?). It's not listed as an ingredient in most cheeses, either, but aged cheeses are high in yeast. I believe that the additive version of baker's yeast is just a concentrated, cultured version of a naturally-occurring substance. The link below has a good list of the main foods that are high in yeast (though it isn't about IgE allergies):

 

Open Original Shared Link

 

Anyhow, yeast may have nothing to do with your rash...but if you are allergic to yeast, wine would definitely cause a problem. Yeast is in so many foods that my allergist said it's a really hard allergy to deal with. I could do without fruits and baked goods, but I'm hoping my allergy test is negative because I love pickles and vinaigrette salad dressings...

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.