59 replies to this topic

[Lady Eowyn]

If I handle gluten containing products and touch my DH it certainly has an effect - makes it super sore! Had thought this was part of my celiac and didn't realize this was an additional wheat allergy on top. (I don't mean the DH here, but the external wheat product application). If you can understand this you're doing better than me .

As for new people, I'm sure they're not dim-wits. It is nice to read different reactions and make up your own mind - not alone in the struggle.
Probably put my foot in it . (Love the smileys - don't know what they all mean).
Take ERFA (natural thyroid hormone).

[jerseyangel]

As for new people, I'm sure they're not dim-wits. It is nice to read different reactions and make up your own mind - not alone in the struggle.
Probably put my foot in it

Not at all, Lady:). I think you summed it up very nicely, and I wholeheartedly agree.

[IrishHeart]

As for new people, I'm sure they're not dim-wits. It is nice to read different reactions and make up your own mind

Not at all!

No one thinks newbies are dim-wits, but gluten- headed people, anxious people, very ill people and scared and new- to- the- diet people---have a lot of questions. You'd be surprised at some of those questions.

Most of us try to give answers that seem reasonable.

I asked a few doozies myself in the beginning and I got panicky at times by what people told me. There is no handbook really, no set- in -stone guidelines and common sense is most definitely needed.

When you first start out, though, it can be very confusing.

[danalolly]

Yep.

i have onlyknown i have had celiac for 2 years now, I am 36 years old. I am extremely careful with what i eat so I do not have sttomach issues at all anymorw. only twice duid i get sick by mistake. in the past couple months i have had alot of skin issues, extremely itchy skin everywhere, open sores on my scalp, no relief. i was tested for DH, i dont have. i figured out that the shampoos, hairsprays, and hair dyes had gluten. It has only been 3 days, but my scalp is almost back to normL AND THE ITCHING AND RASHES WENT FROM 100% TO ABOUT 10%. nO DOCTOR TOLD ME THIS, i FIGURED IT OUT, it is frustrating to me that since Ifound out I was celiac, it seems I have to find out what to do all on my own. doctors at times look at me like i am crazy.

another thing weird is that i have had vitiligo ( a skin condition where i do not have pigment in my skin). since I went gluten-free, i have been getting pigment back in my skin. No doctor seems to care about this either. I also had psyoriasis prior to diagnosis, and now it is gone

[JoyMurphy]

I have severe psoriasis on my scalp. Thus, there are many open wounds on my scalp. I use gluten free hair products. When I am glutened, it affects my hair and my skin as well. I get a wide strip of very coarse hair from the middle of my scalp. My skin becomes thin and easily damaged as well as hyper sensitive. So I have no doubts that inhaling trace amounts or having them seep in, is not safe - at least for me.
I know if I use a hand soap w gluten, it shreds my hands and they dry out and peel like crazy. gluten-free soap doesn't do that.
Not sure about wheat in fabric starch. But after sleeping in a hotel with a heavily starched bed, I had a raging headache. I am very suspicious. Gluten full mascara has the same effect
Not sure if anyone else has the same findings.

[soyjoy318]

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!!

[Patti C]

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.

[dilettantesteph]

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.

[Gemini]

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.

[cavernio]

"    "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?

[cavernio]

" 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.

[Gemini]

" 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.   

[Gemini]

"    "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.

[cavernio]

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.

[ShannonKruger]

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.