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Gluten-Free For 20 Years With Rash From Hell


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#61 squirmingitch

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Posted 15 August 2013 - 03:30 PM

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.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


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#62 squirmingitch

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Posted 15 August 2013 - 03:38 PM

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. ??????


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#63 Simone52

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Posted 15 August 2013 - 04:02 PM

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!


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#64 squirmingitch

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Posted 15 August 2013 - 05:10 PM

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.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#65 ItchyAbby

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Posted 15 August 2013 - 05:11 PM

((((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...


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#66 squirmingitch

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Posted 15 August 2013 - 05:12 PM

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.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#67 squirmingitch

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Posted 15 August 2013 - 05:47 PM

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.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#68 squirmingitch

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Posted 15 August 2013 - 06:11 PM

I just ran across this:

http://video.about.c...petiformis-.htm

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:

http://en.wikipedia....wiki/Colchicine   OY!

 

Then there are these:

http://www.ncbi.nlm..../pubmed/7458365

 

http://www.ijdvl.com...05;aulast=Konda

 

http://emedicine.med...62640-treatment            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......

  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#69 squirmingitch

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Posted 15 August 2013 - 06:13 PM

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:

 

http://www.ezgluten.com/

 

http://glutenfreecoo...utentestkit.htm


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#70 Simone52

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Posted 16 August 2013 - 05:14 AM

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:

 

http://www.ezgluten.com/

 

http://glutenfreecoo...utentestkit.htm

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


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#71 Simone52

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Posted 16 August 2013 - 05:28 AM

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. 


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#72 greenbeanie

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Posted 16 August 2013 - 06:07 AM

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 (?).

 

http://www.ncbi.nlm..../pubmed/8472187

http://www.ncbi.nlm....pubmed/18496744

http://www.ncbi.nlm....pubmed/12405161

 

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.


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#73 Simone52

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Posted 16 August 2013 - 12:21 PM

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 (?).

 

http://www.ncbi.nlm..../pubmed/8472187

http://www.ncbi.nlm....pubmed/18496744

http://www.ncbi.nlm....pubmed/12405161

 

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.


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#74 greenbeanie

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Posted 16 August 2013 - 01:36 PM

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):

 

http://www.womentowo...astfreediet.pdf

 

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...


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.



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