Celiac Disease And Topical Applications ?

[irish daveyboy]

Hi all,

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Straight away I know this topic is going to rub a lot of people up the wrong way!!

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I've read so many posts about Gluten in Shampoo, soap, toothpaste, oil etc, etc

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So what's the big deal ??

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To the best of my knowledge for Gluten to be a problem for Celiacs it needs to be INGESTED.

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Who's going to eat a handful of lipsticks or a couple of jars of hand cream ??

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Yes, people can have an adverse reaction to Shampoo etc,

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but they don't necessarily have to be Celiac !!.

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It seems to me that a lot of people are attributing different ailments to Celiac Disease,

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These also affect non Celiacs too !!!

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I can't eat tomatoes is this Celiac related ??? ....

.

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I've never liked tomatoes it's nothing to do with Celiac Disease!!

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Come on People get real..

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Too many people it would seem are joining the ranks of the HYPOCONDRIAC.

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Ok,

Come on enlighten me,

is there something that I'm missing here ? ?

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Best Regards,

David

[confused]

Well first off i have Dh, so it is a big deal to me. When i have makeup that has gluten on it my DH on my face gets worse, when i have lotion on my body that has gluten on it, it makes it worse. If i wore lipstick with gluten i would be licking my lips and digesting the gluten. It is a big deal. When i have shampoo, conditioner, hair spray, mouse, gel with gluten in it, i either will run my hands threw it and get gluten residue, or my hair gets in my mouth many times a day, so i would be ingesting it. I react to very small amounts of gluten so it does affect me, as it does many others.

paula

[zarfkitty]

During a shower, small amounts of shampoo and conditioner can easily get into a person's mouth. Especially a child's. Also, traces of said shampoo and conditioner find their way onto hands and into eyes, nose, and mouth.

Same with other topically applied products.

If we are going to scrutinize our food labels and restaurants looking for cross-contamination, it makes sense that we would scrutinize anything that might end up in our mouths.

But if you don't think it's a big deal, you're entitled to that opinion. That doesn't make ME a hypochondriac.

[Guest j_mommy]

Dave in some ways I agree with you!!!

I have not had a problem with lotions ect. Lipstick/lip stuff does get ingested....when ever you lick your lips ect. Toothpaste is the same thing...inevitably you're going to sollow a small amt!

Shampoo/ conditioner is hard for me b/c I don't think I get any in my mouth...I'm a bath person and it would be hard for that to happen....it's also the last thing I do before I get out. I do agree with a previous poster about products...I touch my hair all the time through the day. But I must say I have never went to a salon and worried about getting shampoo/conditioner or hair color in my mouth ect.

[irish daveyboy]

Hi all,

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I see a few people are already 'up in arms'.

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Having checked a few DH forums around the world, it seems only the US - CANADA

have a fixation about Gluten in shampoo, lipstick etc.

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That's not to say that it's not a problem for a small number of people,

But there are other additives in shampoo etc that effect people with eczema etc,

Who are not Celiac or suffer from DH !!

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As regarding people associating certain ailments with Celiac Disease,

there are non-celiac sufferes as well.

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I suffer from in-grown toe-nails and if I did enough research and used vague cross-references

I'm sure I could VAGUELY associate it with the depletion of the OZONE LAYER!!!!!!!!!!

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I posted awhile ago an article that people could suffer similiar symptoms to Celiac Disease from

additives and E numbers, the point I'm making is that it could be something other than Celiac or

Dermatitis-Herpetiformis.

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Here's part of the post:

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Phenylephine: Side effects are nausea, stomach upset, loss of appetite, headache, chest pain.

Zinc: Toxic doses cause vomiting, diarrohea, stomach irration, depressed immune function, anaemia.

Quinine Sulphate: headaches and nausea.

Taurine: exessive consumption can cause diarrohea.

E110: Sunset Yellow, side effects hives, rhinitis, nasal congestion, allergies, abdominal pain, nausea, vomiting

indigestion, distaste for food.

E132: Indigotine, may cause nausea, vomiting, skin rash, breathing problems and other allergic reactions.

E219: Tert-ButyHydroQuinone, may cause nausea, vomiting, delerium. (a dose of 5g is considered fatal)

E412: Guar gum, can cause nausea, flatulence, cramps.

E440: Pectin, large quantities may cause temporary flatulence and intestinal discomfort.

E622: Monopotassium glutamate, can cause nausea, vomiting, diarrohea, abdominal cramps.

E924: Potassium bromate, large quantities can cause nausea, vomiting, diarrohea, pain.

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I'm not having a go at people, I just need to be enlightened.

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Being on the other side of the Atlantic, this is something that's not a problem !!

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Maybe all our creams, oils, toothpastes, lip balms, lip sticks are ALL GLUTEN FREE ALREADY ??.

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Regards,

David

[Guest j_mommy]

Dave,

My Shampoo clearly states Wheat in the ingredients. I am not one who believes that I need to be concerned about topical applications....but don't you think it's possible if you are not careful...you could ingest it???? I'm not saying you drink it but some could get into your mouth if not careful!!!

I do not have DH...atleast not that has been DX'd.

I can see the both sides of this!!! I also believe that some are more sensitive than others.

I can also see where some things affect non celiacs as well.

[irish daveyboy]

Dave,

My Shampoo clearly states Wheat in the ingredients. I am not one who believes that I need to be concerned about topical applications....but don't you think it's possible if you are not careful...you could ingest it???? I'm not saying you drink it but some could get into your mouth if not careful!!!

I do not have DH...atleast not that has been DX'd.

I can see the both sides of this!!! I also believe that some are more sensitive than others.

I can also see where some things affect non celiacs as well.

Hi 'j_mommy',

Just out of curiousity I went through everything in the bathroom and NOTHING mentions wheat or an allergen on the ingredients.

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Toothpaste,

Palmolive,

Macleans,

Anvil and Hammer,

Pearl Drops.

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Creams,

Nivea,

Biore,

Colet,

Johnston Bros.

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Shampoos,

Cien,

Dove,

Head and Shoulders.

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Anti-perspirants,

Natrel,

Lynx,

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Checked all the medication, Tablets and creams,

no mention of any allergen additive.

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So maybe that's why it's unheard of over here !!

They don't put it in !!!!!!

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Regards,

David

[Guest j_mommy]

I wish that were the case here!!! Would make life alittle easier! I use Paul Mitchell Shampoo( Note: I have not been glutened form it yet, even though it says it has wheat in it)

It is the only topical thing in my bathroom that has Gluten in it. (I just went throught everything too!

Just curious, over there do you have stricter regulations on that kind of thing...in food and topical things???? In topical products do they just not use gluten????

[irish daveyboy]

Just curious, over there do you have stricter regulations on that kind of thing...in food and topical things???? In topical products do they just not use gluten????

[trents]

I would agree with Irish Davey that too much stuff gets blamed on gluten by the Celiac community. With topical things it could be an allergy to the wheat unrelated to Celiac disease or an allergy to some other ingredient present. While it is true that we absorb many things trough the skin, Celiac disese starts with what happens in the gut. Other effects of gluten not involving its ingestion may be real but fall outside the scope of Celiac disease. Perhaps we should change the name of this message board to something besides Celiac.com if we are talking about diseases caused by noningested gluten. How about, "AllThingsGluten.com"?

Steve

[Ursa Major]

I found that when I still used soap with wheat germ oil in it, I would feel sick to my stomach and have stomach cramps a lot. When I switched to soap without wheat germ oil I felt much better within a day. Obviously, if you wash your hands with any kind of soap, you can't help ingesting some of the residue after rinsing when you eat/prepare food with your hands. The same goes for shampoo and lotions (which can also have barley extract or oat bran in them). Many lipsticks will have wheat germ oil in them. How is it possible to avoid eating some of it?

I realize that in Europe they claim that wheat germ oil doesn't contain any gluten (the same goes for wheat starch). But I personally think, from experience, that is nonsense.

Also, people have reacted with obvious glutening symptoms to vitamins. One of the reasons is, that vitamin E is often derived from wheat germ oil. After switching to a different brand that had vitamin E from a different source, those symptoms cleared up.

So, David, you can believe what you want in your perfect world over there in Ireland. But things aren't as perfect and clear cut as you would like to believe.

And to call people who don't agree with you hypochondriacs is an insult.

I have now Addison's disease (near-failure of the adrenal glands in my case). Is it celiac disease related? Probably. Because adrenal fatigue/failure is due to stress. And would you not agree that having undiagnosed celiac disease for 52 years would be very stressful for your body?

And for your question about not being able to eat tomatoes. Yes, it is possible that it has to do with celiac disease. Because celiac disease causes leaky gut. And leaky gut causes allergies/intolerances. My naturopathic doctor thinks that as my gut heals I may be able to tolerate some of the foods again that I can't tolerate now (and the list of the foods I can tolerate is very short at this point).

So, please, come down from that high horse you are on right now. Because presently you sound fairly arrogant. Not a good position to be in if you want to win some new friends here.

[irish daveyboy]

Hi Ursa Major,

I'm really sorry that you feel sick using wheat germ oil soap.

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As regards washing your hands and ingesting gluten from residue,

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Firstly you didn't rinse your hands very well if that's the case,

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Secondly to ingest sufficient gluten from soap or shampoo,

you would need to eat several bars of soap or drink a bottle or two of shampoo.

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Come on!! ... who in there right mind would do that ???

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With reference to the tomatoes ' I was 'slagging people' that try to blame every little ailment they have on Celiac Disease'.

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A young neighbour suffers very badly from eczema and reacts to shampoo, soap and washing detergent she is NOT CELIAC or suffers from DH she is not going around looking for something to blame !!

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I'm not running in a popularity contest, merely trying to make some misguided people see sense.

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I am commenting as an outsider, and how ridiculous some of the claims are!!!

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You show me medical evidence that (Pub Med or Lancet)

using topical preparations which have wheat germ oil as an ingredient is

DETRIMENTAL to Celiac Sufferers and I will stand corrected.

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I may come across as arrogant, but I'm only telling like it is!!

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Regards,

David

[Ursa Major]

You know what, David, you sound an awful lot like a troll to me, who is trying awfully hard to raise people's ire and is having a lot of fun doing it. There is no point trying to argue with you, as you have obviously made up your mind already, that you are right and everybody else is wrong.

[Jestgar]

I agree with Ursa.

Why does it matter to you how other people choose to live their lives?

[Mango04]

I just think it's funny that someone starts a new thread on this subject like, once a week now.

Dave, I do think your point about additives and preservatives causing symptoms is very legitamate. People should take that into consideration when consuming processed foods.

But seriously, how many times in a row does this same conversation about gluten in shampoo (etc.) have to take place on this board?

Everyone who wants to use gluten-containing shampoo is welcome to do so. Everyone who wants to use gluten-free shampoo....is welcome to do so. Why is everyone so sensitive about this subject and so determined to convince others that their way is the right way? If I were to choose tomorrow to purchase a gluten-containing hand cream, it would not bother me personally that people I know on this board choose to stick to gluten-free hand cream.

And yes, rules, regulations, ingredients in products, labeling laws etc. etc. vary greatly from country to country. A specific brand of toothpaste in Ireland, for example, could have completely different ingredients than the exact same brand of toothpaste in the US.

Just thought I would use colors and weird sizes to go along with the original tone of the thread LOL.

Ugh okay I'm done now.

[Lisa]

I just think it's funny that someone starts a new thread on this subject like, once a week now.

Dave, I do think your point about additives and preservatives causing symptoms is very legitamate. People should take that into consideration when consuming processed foods.

But seriously, how many times in a row does this same conversation about gluten in shampoo (etc.) have to take place on this board?

Everyone who wants to use gluten-containing shampoo is welcome to do so. Everyone who wants to use gluten-free shampoo....is welcome to do so. Why is everyone so sensitive about this subject and so determined to convince others that their way is the right way? If I were to choose tomorrow to purchase a gluten-containing hand cream, it would not bother me personally that people I know on this board choose to stick to gluten-free hand cream.

And yes, rules, regulations, ingredients in products, labeling laws etc. etc. vary greatly from country to country. A specific brand of toothpaste in Ireland, for example, could have completely different ingredients than the exact same brand of toothpaste in the US.

Just thought I would use colors and weird sizes to go along with the original tone of the thread LOL.

Ugh okay I'm done now.

I am in full agreement, Mango. Your point has a great deal of merit and was well said.

This forum is full of valuable information and personal testimonies, but it is not doctrine. It's important to weight your options and make your own informed choices.

[irish daveyboy]

Ursa Major and Jestgar,

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Your missing the whole point here !!

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I don't know.

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Because we, as Europeans don't encounter any of this ????.

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I'm merely asking for someone to show medically that allergens in

topical products are DETRIMENTAL to Celiac or DH sufferers ????

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The other point I was making was that people are trying to blame Celiac

for their every little ailment.

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Point in question, a post today was, (no disrespect to the poster who maybe looking for answers)

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I'm urinating every 2 - 3 hrs is this Celiac ?.

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My answer is not necessarily !!

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Try:

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Kidney infection

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Possible dehydration action

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If alcohol was consumed it has that effect

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Body's natural action to excess fluid retention

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There are any number of possibilities.

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David

[jmd3]

Newly diagnosed people do not know all the symptoms....It was posed as a question....

I went through 14 doctors trying to find out what was wrong with me. When I was diagnosed I was first told by a doctor through the mail on a 3x2 piece of paper. I had absolutely no idea what it was. Then the following 2 doctors diagnosed me - one just told me to see a GI, then when I saw the GI and went through all the tests there, I was handed a piece of paper about the local celiac chapter's meetings, and one more sheet of paper as to things I should avoid. Wheat, rye, barley..etc.. I was in shock...

My shampoo before I was diagnosed had wheat gluten proteins in it, says it on the ingrediants. Many anti-aging products in the US have wheat gluten protiens. My current shampoo that I use now has rice proteins in it. I feel safer that way as I do get water on my lips when I shower, then it goes into my mouth..

By the way....some of my first symptoms was dizzy (vertigo), heart palpatations, then extreme thirst, then of course frequent urination, burning itchy skin, 6 or more canker sores inside my mouth, unrelenting brain fog....plus so much more!! I had a ton of things happening to me and not one doctor diagnosed me for such a long time -...then the more obvious symptoms happened with losing 32 pounds in an extremely short time. I believe that I got cancer and it grew so rapidly because my fighting cells were busy fighting my gluten filled cells.... instead of what they should have been fighting. Of course that is my belief and it fits with most of the books that I have read.

We as a community should be respectful to others feelings - we are a community and should not judge others, I am glad that when I posted one of my first questions that someone did not repost my questions and pose it to be wrong or indifferent for asking.

[irish daveyboy]

'jmd3' thank you for your input,

we were all mis-diagnosed for years and all suffered horrendously

and in the begining we all were ignorant about the disease,

and we all learnt by asking questions!.

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Now I will try this one more time (you will notice the rest of this post is in large writing so people can read it easily and maybe answer the question that i've been asking from the outset)

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We in Europe do not have this problem ?

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It is unheard of.

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I am trying to educate myself to it.

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Can somebody give me a link to a PubMed article or something.

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I want to see for myself that Gluten in topical products

is detrimental to Celiacs or DH suffers?

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Regards,

David

[ravenwoodglass]

Since you seem to really want an answer and not just be wanting to stir dissent if you go to this post,

Open Original Shared Link

and click on the links on post number 53 you will find some info on the issue of gluten reaction from the instillation of minute amounts on the mucous membranes. The first link is PubMed.

The links deal with testing but please remember that celiac and gluten intolerance are autoimmune mediated disease. That means that even when a small amount crosses the mucosal barriers (mouth, nose, eyes, GI tract, rectum, labial etc) it starts an immune system response. It may take lots of bread in the GI tract to produce a flattened villi, the end stage of the disease for the GI tract, but it takes much less, anything more than 200ppm, (using the European standard), for an immune system response. That immune response can effect the brain, joints, skin etc to a much higher degree than would seem likely to the folks that equate amount consumed with reaction. It takes only a few micrograms to elicit the immune response. Those that were diagnosed before severe damage was caused to other systems, and whose bodies are not flooded with autoantibodies may not notice the action caused by this response.

I should note I did not stop using gluten containing personal products because of something I read here or over the net. I did not have those resources when I was first diagnosed. I stopped because even after a couple months on the diet I was still losing hair and still covered in oozing sores, barely able to walk (ataxia is very sensitive to CC) and still had a great deal of joint pain. The last two I didn't at that time even think were related to celiac. Many of my others symptoms had partially resolved and I was bored one day when spending one of my many hours on the john and started reading labels. That was my ah ha moment. Within a month of clearing all those products out of my house my hair stopped falling out, my skin healed for the first time in 30 or so years and my mystery glutening stopped for the most part. It was a few months later that I began to research why.

[irish daveyboy]

Many thanks 'ravenwoodglass',

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While your reference is informative (for which i thank you), it still is not what I'm looking for!

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The links you provide, talk about mucus as a diagnostic tool.

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I was looking for something to read that is medically based and shows a relationship

between topical products containing

(small amounts of allergen products and an aggravation of Celiac or DH symptoms)

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OR

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Toothpaste (containing same, causing bad reactions to either Celiac or DH sufferers)

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In the reference you posted, I was particularly interested in the posts by 'doll' and her assertion

that gluten can NOT be absorbed through the skin.

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I intend to read that thread fully and hopefully it will be enlightening.

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Many thanks for taking the time to post the reply.

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Best Regards,

David

[ravenwoodglass]

Many thanks 'ravenwoodglass',

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While your reference is informative (for which i thank you), it still is not what I'm looking for!

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The links you provide, talk about mucus as a diagnostic tool.

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I was looking for something to read that is medically based and shows a relationship

between topical products containing

(small amounts of allergen products and an aggravation of Celiac or DH symptoms)

.

OR

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Toothpaste (containing same, causing bad reactions to either Celiac or DH sufferers)

.

In the reference you posted, I was particularly interested in the posts by 'doll' and her assertion

that gluten can NOT be absorbed through the skin.

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I intend to read that thread fully and hopefully it will be enlightening.

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Many thanks for taking the time to post the reply.

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Best Regards,

David

I also believe that gluten can not be absorbed through INTACT skin. The problem with topicals is that they can get onto the mucous membranes and also be injested through CC contact with foodstuffs.

Not everyone is going to have a noticeable reaction, also over time the same person's obvious reactions can change. For example, in the first couple of years even the smallest amount of CC would cause my arthritis to flare. Now 5 years into the diet even a severe glutening is not enough to cause a flare just a few sharp tinges. If I were to to go back to consuming gluten though in a few weeks at most the antibody reaction would be back and so would my arthritis. The one thing that hasn't changed though is the intesity of the neuro effects, even a minute amount of gluten will cause my ataxia to worsen. Each of us is different, what bothers one may not bother another. Very little is really well known about celaic. My GI doctor didn't even know it has documented neuro effects.

You may want to google you query also, be specific and use as few words as possible. You may be surprised how much reliable research is available. Much of it however is very technical and may be hard for a lay person to understand.

[Ursa Major]

Apparently, while gluten is probably not absorbed through normal skin, it IS absorbed by mucous membranes, causing a reaction.

And I don't necessarily get an intestinal reaction from shampoo containing gluten (unless I swallow some, and no, huge amounts are NOT needed), but I will get a horrible rash on my scalp with unbearable itching. Since I switched to Dove shampoo that problem has been eliminated.

Your problem is, that you will only believe what doctors and researchers say in official articles, and what is considered circumstantial evidence (for lack of studies on these subjects), i. e. the experiences of people living as celiacs, means nothing to you. That is a problem, because way too little is known about celiac disease, and the majority of doctors and researchers are woefully ignorant of celiac disease. Plus, in their arrogance, many of them discredit their patient's testimony.

In addition, nobody in their right mind will purposely ingest gluten for research purposes after being diagnosed, because the risks are just too great. What good is it to me to help people down the road, only to die of cancer in a few years due to experimentation and continued villous atrophy, not to mention being extremely ill in the process?

Hence the absence of those articles you seem to demand in order to believe that topically applied gluten in whatever form could cause a problem for very sensitive individuals (and it appears that not everybody has that problem).

I still maintain you sound like a certain troll who seems to keep coming back. Because I don't believe you will be satisfied with any amount of evidence, but would rather like to start a discussion that will end up being a nasty fight.

[irish daveyboy]

Thank you 'ravenwoodglass'

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I appreciate that everyone is different and certain things will have differing effects on different people.

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I guess what I was looking for was a standard type reaction. (for example)

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Someone might say when I use gluten containing soap my hands swell to twice there normal size.

and then more and more people might say that happens to me too !

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So it would be logical to assume if it had that effect on a lot of people,

that could be classified as a definite reaction !!

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I still maintain that too many people try to blame Celiac Disease for their ailments without investigating alternative causes !!

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I will give you an example (this is fact and is not having a jibe at anyone)

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I suffer from Migrane Headaches and have done so for a long time, one of the possible explanations

could have been a symptom of Celiac Disease, and if I wanted I could have just left it at that.

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Mine in fact stems from an allergy to food colouring (Beta-Carotene),

I wasn't happy to blame everything un-conditionally on Celiac Disease and went and had a full allergen reaction appraisal.

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Boy did I get an eye opener !!

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I have a list the length of your arm of things I'm allergic to,

it seems some of the things that we are addicted to , (drinking a lot of coffee etc)

we are in actual fact allergic to ?

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Thanks for your positive input,

Best Regards,

David

[ravenwoodglass]

Thank you 'ravenwoodglass'

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I appreciate that everyone is different and certain things will have differing effects on different people.

.

I guess what I was looking for was a standard type reaction. (for example)

.

Someone might say when I use gluten containing soap my hands swell to twice there normal size.

and then more and more people might say that happens to me too !

.

So it would be logical to assume if it had that effect on a lot of people,

that could be classified as a definite reaction !!

.

I still maintain that too many people try to blame Celiac Disease for their ailments without investigating alternative causes !!

.

I will give you an example (this is fact and is not having a jibe at anyone)

.

I suffer from Migrane Headaches and have done so for a long time, one of the possible explanations

could have been a symptom of Celiac Disease, and if I wanted I could have just left it at that.

.

Mine in fact stems from an allergy to food colouring (Beta-Carotene),

I wasn't happy to blame everything un-conditionally on Celiac Disease and went and had a full allergen reaction appraisal.

.

Boy did I get an eye opener !!

.

I have a list the length of your arm of things I'm allergic to,

it seems some of the things that we are addicted to , (drinking a lot of coffee etc)

we are in actual fact allergic to ?

.

Thanks for your positive input,

Best Regards,

David

I agree with your last statement, many go through awful withdrawl from any neurotoxin and gluten is definately one of those.

I also agree that not everything is gluten, your migraine example is a good one. I lived with migraines, sometimes it was just the auras, sometimes also the pain, for many many many years. I was lucky and they did stop after I went gluten-free and have never returned. If they hadn't I would have continued to look for the cause.

It is hard to say what symptoms anyone will get from getting CC topically or injesting. They do know though that an immune system reaction with the formation of the reactive cells takes place when they do testing involving the mucous membranes. Otherwize there would be no results when they study the cells afterwards. That would be a systemic reaction that might or might not cause noticeable symptoms if a one time thing but if it is occuring daily, such as would occur when minute amounts are injested accidentaly it could keep the immune system actively going against whatever organ our body decides to attack. And that varies from person to person. It takes time for the antibodies to gluten to leave the system after diagnosis, a person who is unknowingly injesting small amounts through CC'd food or personal products or even home repair stuff can remain ill and then be thought to have refractory celiac or other problems. That is one of the main reasons I stress the need to be very strict in the beginning, you can always add in things you have doubt about later. That way if you do react it is clear.

The NIH, National Institute of Health in US keeps a data base where hidden gluten is listed in non-food items. It there wasn't the need to do this they wouldn't have it IMHO.