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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Myths About Gluten In Everyday Non Edible Objects?
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60 posts in this topic

There is no scientific evidence to back this but I find it interesting that when I have used products with gluten, they cause problems . Not typical problems found when ingesting gluten, but other issues... For example....

Suntan lotion w G = very red sun burn, gluten-free= nice tan

Hand and body lotion w G= sticky skin, gluten-free lotion= soft, silky skin

Shampoo w G= frizzy hair, GFshampoo =soft, silky hair

G mascara= red, itchy eyes, lash breakage, gluten-free mascara = long, lush eyelashes

G eye shadow = red eyes, loses color, gluten-free eyeshadow = clear eyes, longer lasting

Make up w G = pimples, gluten-free make up, clear skin

G soap = dry flaky skin or sticky residue, gluten-free soap normal skin

G laundry soap = itchy clothes or sheets

Does anyone else see weird reactions similar to these?

Yes!!

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I'm glad to hear someone else has issues with red eyes when wearing mascara or eye shadow with gluten. I was told this couldn't happen, but I knew something was going on. Yes, I agree, it probably won't cause celiac problems, but it definitely causes a reaction in me. I didn't know that about hair products, but I do have frizzy hair, so I will be trying a new shampoo and conditioner. Something else that happened with me, that I've been told isn't possible since it isn't ingested, is, before being diagnosed with a bad gluten sensitivity, I worked in a pizza parlor that the dough was made with High Gluten flour. I'd come to work and within 30 minutes, I'd be tired, stuffy and just not feeling well, even though I felt fine coming in. I told everyone I was allergic to the place. Sadly, I really was. Has anyone else experienced anything similar. I do know that when I eat gluten by mistake, within 2 days I am miserable with cramping, sharp pains (internal porcupines), bloating and heart burn (this usually shows up first-within minutes to an hour). This will go on for several days.

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I do have frizzy hair, so I will be trying a new shampoo and conditioner.

I also have frizzy hair. My leave in conditioner contained wheat so I stopped using it and my hair frizzed out worse then ever. I had a gluten free lotion that was working, and it looked a lot like the leave in conditioner so I tried it and it works well, FWIW.

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I'm glad to hear someone else has issues with red eyes when wearing mascara or eye shadow with gluten. I was told this couldn't happen, but I knew something was going on. Yes, I agree, it probably won't cause celiac problems, but it definitely causes a reaction in me. I didn't know that about hair products, but I do have frizzy hair, so I will be trying a new shampoo and conditioner. Something else that happened with me, that I've been told isn't possible since it isn't ingested, is, before being diagnosed with a bad gluten sensitivity, I worked in a pizza parlor that the dough was made with High Gluten flour. I'd come to work and within 30 minutes, I'd be tired, stuffy and just not feeling well, even though I felt fine coming in. I told everyone I was allergic to the place. Sadly, I really was. Has anyone else experienced anything similar. I do know that when I eat gluten by mistake, within 2 days I am miserable with cramping, sharp pains (internal porcupines), bloating and heart burn (this usually shows up first-within minutes to an hour). This will go on for several days.

Working in a pizza parlor or a bakery or anywhere else where there is a lot of airborn flour will cause a Celiac reaction. Celiac's cannot have these kinds of jobs unless they want to remain sick. You are essentially breathing it in and anything that goes down your nose and throat, or even just sits in your mouth and throat for that matter, is already in your GI tract.

There's no mystery to that.

You can certainly have a reaction with your eyes if you use eye shadow or mascara with a wheat component but it is most likely an topical allergic reaction, not a celiac one. I have Sjogren's Syndrome and I have problems with my eyes from time to time because they are dry and I have allergies which directly affect my eyes but it isn't because I wear eye shadow.

I can wake up with reddened eyes after having NOT worn eye make-up so it's the allergies that are troublesome. Most concerns about gluten in make-up can come from the use of tocopherols, which is Vitamin E, and it can be derived from wheat germ oil. Most reputable celiac organizations reagrd it a non-issue because they are so highly refined and the amounts used are miniscule.

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"    "DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion. It may take patients a substantial amount of time to erase years of IgA buildup in the skin."    "

 

Sorry haven't read this thread in awhile and I see there's new responses, but if I can get IgA antibodies deposting to/leaving through my skin, and these are what cause DH flare-ups,  why would they not react to topical gluten?

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" I have Sjogren's Syndrome and I have problems with my eyes from time to time because they are dry and I have allergies which directly affect my eyes"

 

Sorry for double post but this is a completely different topic, but I feel like I should say that you should make sure you're getting enough vitamin A. If you delve a little into vitamin A deficieny-related eye issues, what you have described does seem to fit that critera. I mean, this is obviuosly a symptom a sjorgen's too, and I'm sure you've got other symptoms and been tested, but it still might be worth looking into vit A levels.

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" I have Sjogren's Syndrome and I have problems with my eyes from time to time because they are dry and I have allergies which directly affect my eyes"

 

Sorry for double post but this is a completely different topic, but I feel like I should say that you should make sure you're getting enough vitamin A. If you delve a little into vitamin A deficieny-related eye issues, what you have described does seem to fit that critera. I mean, this is obviuosly a symptom a sjorgen's too, and I'm sure you've got other symptoms and been tested, but it still might be worth looking into vit A levels.

Thanks for the tip but I know I no longer have deficiencies.  I have been tested and do have Sjogren's and have all the classic symptoms.  Once you trigger for it, it isn't going away.  Having dry eye really affects allergies.  It has gotten much better since going gluten-free but during allergy season, all bets are off.    :(

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"    "DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion. It may take patients a substantial amount of time to erase years of IgA buildup in the skin."    "

 

Sorry haven't read this thread in awhile and I see there's new responses, but if I can get IgA antibodies deposting to/leaving through my skin, and these are what cause DH flare-ups,  why would they not react to topical gluten?

Because DH is caused by the internal reaction to gluten and the aggravation to your immune system.  If you are getting reactions topically, then you may just have super sensitive skin, which makes sense for those with the skin version of Celiac.  Or you may be reacting to something else in the products you are using.  I would think that anyone with DH may most certainly have other skin sensitivities.

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Because DH is caused by the internal reaction to gluten and the aggravation to your immune system.  If you are getting reactions topically, then you may just have super sensitive skin, which makes sense for those with the skin version of Celiac.  Or you may be reacting to something else in the products you are using.  I would think that anyone with DH may most certainly have other skin sensitivities.

 

 Doesn't IgA need gluten to react to your own body, dh or villous damage or neuronal damge? I'm under the impression that IgA in the skin wouldn't do anything negative unless it reacted with/got reacted by gluten.

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I just wanted to put my hat in here since this seems to apply heavily to my situation. :)

 

I have to have gluten free shampoo, conditioner, body wash, chap stick, etc. It wasn't all at once, but started in college for me with my severity hitting a new peak. I am extremely sensitive to gluten/wheat. When I speak to newly diagnoised Celiacs I do express caution because of my own issues. I had a shampoo that had wheat germ in it. As things progressed I began to have "shaking episodes" as the neuro guys put it, or awake seizures. I also began to get rashes on my skin on my upper arms as well.

 

My celiac has progressively gotten worse over the 13+ years I have had it.  Now, I also have to say that I cheated severely for a couple years in my high school years, which I think has affected my severity. I get tested almost constantly and travel to many specialists. I am one of the more rare severe celiacs that have to watch everything.

 

Basically, for "new" celiacs I wouldn't worry about it up front. Just keep it in the back of your mind that if you do not adhere to the diet and doctor recommendations there are possible severe consequences. I was dumb enough not to listen and have to live with what I did as well as my loving supportive husband.

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