What Is With All The "look Out For Gluten In ~ Insert Toiletry Item~"

[sbj]

3.Remember that Celiacs usually have more than one allergy.

4. Being a Celiac can trigger . . . allergies.

Hi SalmonNationWoman:

I don't believe I have heard from my doctor or read any medical studies that show that those of us with celiac disease "usually have more than one allergy." Especially considering that celiac disease is not an allergy? And similarly, I don't believe that I have ever heard from my doctors or read a medical study that shows that "being a celiac can trigger allergies."

I am just honestly curious about any scientific basis for these conclusions. Can you provide some further detail, other than anecdotal, about these two topics?

[Sailing Girl]

Raisin, or anyone else who has problems with Burts Bees. Do you think you had a reaction, or did you just cut it out just in case? I think it is inevitable to ingest a lot of lip balm, and I have been using Burts Bees. Maybe that's partly why I have been so sensitive to food contamination.

Thanks.

Hi dilettantesteph,

I use Burts Bees lip balm all the time and never react -- and I'm super-sensitive. But I haven't tried their new formulation (the one that contains soybean oil) -- when I saw they reformulated, I grabbed all I could find of the old ones. I don't react to soy, but I don't think soybean oil is particularly healthy, either, so it's worth avoiding where I can.

I read somewhere else on this forum that someone had called BB and been told that the tocopheryl acetate and the tocopherol are *not* gluten grain-derived.

Sailing Girl

[SalmonNationWoman]

Physiologically, anytime intestinal permeability is altered, there's a greater likelihood of triggering an immune response which lead to allergies, sensitivities and toxic auto-immune reactions drastically increases.

I never implied or inferred that Celiac/Gluten Intolerenace IS AN ALLERGY. It's a toxic, auto-immune reaction. That being said, Celiacs can be wheat allergic. I have yet to meet anyone in my local CSA chapter (which has several hundred members) that doesn't have at least one secondary food and/or drug allergy/sensitivty that was most likely triggered by gluten intolerance.

The medical profession likes things to be neat, tidy and simple to diagnose. Why do you think there's so much undiagnosed celiac disease/DH/GA and related spectrum disorders in this country? Because it's not neat, tidy and easy to diagnose! Just because you haven't seen a published paper doesn't eman people aren't researching, reporting case studies or reviewing previously published documents. Not everything gets posted to the world wide web or Medline. There are all sorts of politically expedient and corporately profit driven reasons why documents aren't published. We are trapped in a drug oriented, for-profit, disease management system. I don't want to push anybody's buttons, so enough said.

I'm attending a professional forum tomorrow night on the benefits and risks associated with soy foods. I attend these forums twice monthly as the sponsoring group, Physician's Committee for Responsible Medicine, focused on promoting diet as preventative medicine. If anybody would like to hear about diet-oriented research being done that isn't always published in mainstream venues, please let me know and perhaps I can post. The most cutting-edge info isn't always the most popular.

[sbj]

We are trapped in a drug oriented, for-profit, disease management system. I don't want to push anybody's buttons, so enough said.

Without going off into conspiracy theory territory, when you make radical assertions such as, "Celiacs usually have more than one allergy," and "Being a Celiac can trigger . . . allergies," it would be helpful to many on this forum, I believe, if you could back this up with some type of evidence or scientific basis or proof or medical study or doctor statement or ... something. I didn't ask the question to be rude - I was sincerely curious because I don't believe I had ever heard from a doctor or read any scientific study that supported what you boldly asserted.

[ravenwoodglass]

And similarly, I don't believe that I have ever heard from my doctors or read a medical study that shows that "being a celiac can trigger allergies."

I don't have any research on this but in my case my allergist stated that my immune system was basically in hyperdrive at the time he did allergy testing on me. Out of the 99 substances tested the only one I didn't react to was beech trees. He immediately put me on a very strict elimination diet and I was finally correctly diagnosed and confirmed by my GI. My last visit with him I thanked him and he stated that I shouldn't be surprised if a lot of the allergies resolved. They did within 6 months.

I also would be interested in seeing any research on this.

[mommida]

It's a tough call.... Post something that you have to look up ~documented, medically peer reviewed, and accepted information to post a link to, or just say it quick and as simple as one can?

Well...

My daughter was diagnosed with Eosinophilic Esophagitis. Research on-line describes this as "rare" and "unknown" causes. It was just issued a medical standard code in October of 2008. Now it has a place in medicine. Now it can be documented if there is a connection to any other diagnoses or diseases.

Guess where I have found others who 1 know what EE is? 2 Have been diagnosed themselves or a family member?

Right here on the gluten free forum!

Do I have any medical documented proof there might be a connection? No. Does it seem to me that there might be a connection? You bet!

(Inhaled or ingested trigger foods {Eosinophils are associated with allergic reaction.} in some individual cases are GLUTEN. So individuals with EE must maintain a gluten free diet and or environment if gluten is their "trigger".

In my daughter's case ~ no allergy test showed an "allergic " reaction. So medically it isn't proper to say she has an allergy.

She just has Eosinophils damaging her esophagas after eating milk, eggs, and we are still trying to figure out what else. She also is on the gluten free diet for Celiac.

[mattathayde]

all of my research i have done says celiacs have more allergies but it is never backed with a study. my doc (who said its not worth it to go through eating a month of gluten to get a test that will just tell me what i already know so he said just go with the gluten-free diet, no real reason to get the test) said Celiacs usually have more allergies and it seems logical that if you have a reaction to something your body will more than likely react to other stuff too

-matt

[lbd]

Here is a small study showing that atopic dermatitis is more prevalent in people with celiac disease. More related to this thread anyway:

Open Original Shared Link

lbd

[mommida]

I try not to post articles because I have seen the "battle of the links" one too many times.

The individual most do their own research. Never take advice here as the final word on anything. We are all human and make mistakes, or have been blatantly misinformed.

It looks like this topic is completely hijacked now.

[sbj]

Here is a small study showing that atopic dermatitis is more prevalent in people with celiac disease. More related to this thread anyway:

Open Original Shared Link

Thank you, lbd, for the link. I believe that we have disagreed in the past but I hope we can agree that studies of this sort can be informative. I did not believe that I was "hijacking" a topic by merely asking a question or two. Most others here have responded by saying, basically, that there "seems" to be a connection, or that they are sharing their opinion that is not backed up by a study. I take no issue with that. We are all entitled to our opinions - I have a few of my own.

The poster I responded to made flat out assertions without any support. They weren't presented as opinion, they were presented as fact. As such, I sincerely thought that the poster might have some information of which I was unaware. I have celiac disease just like many here and I am always interested in learning more about my condition.

lbd's link, by the way, concludes:

"

Allergy prevalence in a large series of patients with celiac disease is not different from that of their relatives and spouses.

However, atopic dermatitis was about 3 times more frequent in patients with celiac disease and 2 times more frequent in their relatives than in spouses.

One year of gluten-free diet did not change allergy prevalence in the celiac group under investigation

."

[SalmonNationWoman]

When it comes to celiac disease/DH/GA, medical doctors are not the best informed people to rely upon to expand your own knowledge. For that matter, many licensed health care professionals aren't, unless they're effected. This isn't a black-white subject for doctors, researchers the medical community or the public at large. The knowledge base within the medical community is paultry and those that are relatively informed waste a lot of time debating over over minutia.

I read an article on area of MedScape (requires subscription) just a few weeks ago that argued over what should be the "gold standard" for allergy and sensitivity testing with the author in favor of elimination and challenge diets. Blood test rendered far too many false positive and challenges are the only accurate method. I've seen far more editorializing than actual published studies lately. It's wise to make sure where the funding orginates, the "sponsors" of the researchers and even the univeristy, clinic and hospital affiliations. There's no such thing as truly "independent" research anymore.

I'm a licensed health care professional and I've found info as patient starting off at sites like Celiac. com than as a provider to others through professional avenues. I've spent decades on a personal and professional level trying to figure this stuff out with little, if any, support.

When I come across pertinent research I'll post it if it's accessible. It's not that easy as many don't have links open to the public and can't copied/pasted.

[mommida]

We have to agree to disagree and keep eath other in check.

I am the one who was starting the hijacking. I felt I could explain why some medical documentation just is not available yet.

This is the place where people can find comfort and information.

[mattathayde]

I try not to post articles because I have seen the "battle of the links" one too many times.

The individual most do their own research. Never take advice here as the final word on anything. We are all human and make mistakes, or have been blatantly misinformed.

It looks like this topic is completely hijacked now.

i dont think its off topic at all.

ironically i had a short discussion with a friend who also has celiac but she does not have a lot of noticeable symptoms (i notice things that i bet are related like how short she is, and just kind of the way she acts seems like mentally she is a little cloudy). she didnt get the extreme sensitivity and blows off cross contamination and having little bits of stuff getting in (hell she eats sandwiches and wraps all the time in the studio so shes not gluten-free at all). after talking to her i really started to think about all of it and i have started to theorize that the more sensitive people probably have other sensitivities that are adding to how bad it is

-matt

[SalmonNationWoman]

I'm sorry to hear your friend doesn't realize the value in maintaining her gluten-free lifestyle. It must be frustrating for you to see obvious symptoms in her and not get through to her.

I recently went on a gluten-free tour of the local WF store. There was a 30-something fellow with similar signs of cognitive "fog" and he appeared clueless to this situation while it was obvious to the other 17 people on the tour. What came first; the cognitive fog made worse by gluten OR is gluten the source of cognitive fog? Either way, strict adherance to a gluten-free diet is her only solution. It's too bad she can't rise above the fog....

I didn't have any of the typical symptoms of Celiac or Gluten Intolerance either. I don't think having other allergies and sensitivities altered my perception of how sensitive or insensitive I really am to gluten UNTIL I GOT OFF GLUTEN!

I spent decades knowing I have reactions to a list of single-spaced, size 8 font with .6" margins that take the better part of 2 8.5x11" sheets of paper. Yet I've only known about GI for 15 months. I have an ENT/ALLERGY SPEICALIST AND A NURSE PRACTITIONER as parents. Neither of them EVER contributed one iota of useful information to determining any of my allergy problems. It wasn't until I was a teenager and had some relative autonomy to choose my own path that I got proper care, if what I received was really comprehensive. That's when the allergies were detected. Heck, I've been practicing for over 2 decades and couldn't see it in myself. When I had a medical emergency 2 years ago and had yet one more bad reaction to a drug I'd received before did I get serious about discovering the root issue. It's occupied me pretty much fulltime since I was left disabled. I'm doing much better and hope to return to practice parttime, with a very different focus, very soon.

Guess what? The longer I'm gluten-free, the MORE REACTIVE I AM when cc or accidentally exposed. Now I get classic Celiac symptoms whereas I didn't before going gluten-free. Being gluten-free has improved issues with other allergies and seemingly unrelated symptoms. It's highly motivating for me to remain vigilant.

I was accidentally exposed to soy at a gluten-free cooking class on Sat. Soy causes terrible dermatitis, so I'm trapped at home in cotton PJ's catching up on articles and searching for recipes.

[mattathayde]

^^ ya i really wish she would get more serious about it, shes a really cool person, pretty, talented, etc

i know a lot of people get more sensitive to gluten as they are more and more gluten-free and maybe she doesnt see how bad it can get since she has not gone gluten-free

i really need to go get checked by our alternative medicine guy over the summer and try to get allergies cleared (weird stuff but you can really get rid of allergies and some sensitivities w/ no pain/needles)

-matt

[lbd]

I spent decades knowing I have reactions to a list of single-spaced, size 8 font with .6" margins that take the better part of 2 8.5x11" sheets of paper.

Oh dear, on first read, I thought you were saying you were allergic to a certain font and margins. I thought I had read everything about gluten side effects, but that would have taken the cake!

As for the article I cited earlier, it did note that there was a connection between atopic dermatitis and celiac disease. That would seem to point to some validity to the connection between gluten sensitivity and skin reactions to products. This is just from Wikipedia, but it defines atopic dermatitis as:

"The skin of a patient with atopic dermatitis reacts abnormally and easily to irritants, food, and environmental allergens and becomes red, flaky and very itchy. It also becomes vulnerable to surface infections caused by bacteria. The skin on the flexural surfaces of the joints (for example inner sides of elbows and knees) are the most commonly affected regions in people.

Atopic dermatitis often occurs together with other atopic diseases like hay fever, asthma and conjunctivitis. It is a familial and chronic disease and its symptoms can increase or disappear over time. Atopic dermatitis in older children and adults is often confused with psoriasis. Atopic dermatitis afflicts humans, particularly young children;"

There does seem to be some connection to allergies (a very loose term anyway) and celiac. Perhaps an overworked immune system responds more easily to allergens?

Laurie

[krystal]

Medical knowledge and scientific proof of things is the minority of the information that is out there. Very few of the applications of modern drugs have actually been TESTED and scientifically backed. Often medical doctors "accidentally" find out that certain patients' symptoms are alleviated when on a drug for another completely different reason. It then gets published as a case study (NOT scientific double-blind studies) and then doctors country-wide are trying it out. It's the same with surgery.

If you wait and expect scientific proof before accepting it as likely, then you'll wait forever for many things.

Science is only researching where someone is willing to put the money. Doctors only know what they are taught or what they have experienced. They don't have time to keep up with all the vast amount of information there is, which is why the most knowledgeable doctors are those that are open-minded and want to solve the mysteries that don't fit into neat little boxes.

I was just telling my DH that it is infuriating to me that the medical profession (in general) declares you as NOT having something if you don't have all of the symptoms or pass all of the tests. You either HAVE something or you DO NOT have something - they rarely say "you're on your way to this".

It wasn't until recently that the medical community created a classification for those that have "pre-diabetes". Until then, you either HAD it (and had to change your diet/lose weight or use medications) or you didn't and no one did a thing. Now they realize there is a progression to that major illness, a stage at which the ruinous effects can be avoided.

Celiac Disease will, in fact, see that transformation. There are more and more patients that are NOT relying on medical certainty and going with their own understanding and ANECDOTAL evidence and experimenting with dietary changes.

It is a wrong thing to assume that simply because there is no "scientific" study to back up information that it must be false. When the poster says "a lot of people with celiac disease have other allergies"... I don't see this as wrong, misinformed or otherwise a broad generalization. Talk to any healthcare professional that deals with nutrition on a regular basis (NOT a medical doctor) and they will tell you the same thing. It is PREVALENT anecdotal evidence that leads to assumption, that lead to hypothesis, that leads to trial. Where are we in that stage at this point in time? And for a disease that has NO cure other than dietary change, who do you think will really put forth the money for these scientific studies? Drug companies aren't interested in "us" in the least - we have no profit margin for them.

If no one has proven the world round, it must be flat?

If no one has proven there is other life out in space, there certainly isn't?

Our lack of knowledge doesn't mean that something absolutely must not be true.

On top of that, you cannot assume based on ONE study's assumption on a topic the study was not designed to analyze, that allergies aren't more prevalent in celiacs. The study was not designed to study concurrence of allergies with celiac, it was designed to study AD and Celiac. You can't take a population chosen for one study and make assumptions about other characteristics not intended for analysis in the study. That is called "Anecdotal Evidence".

[Tallforagirl]

Oh dear, on first read, I thought you were saying you were allergic to a certain font and margins. I thought I had read everything about gluten side effects, but that would have taken the cake!

As for the article I cited earlier, it did note that there was a connection between atopic dermatitis and celiac disease. That would seem to point to some validity to the connection between gluten sensitivity and skin reactions to products. This is just from Wikipedia, but it defines atopic dermatitis as:

"The skin of a patient with atopic dermatitis reacts abnormally and easily to irritants, food, and environmental allergens and becomes red, flaky and very itchy. It also becomes vulnerable to surface infections caused by bacteria. The skin on the flexural surfaces of the joints (for example inner sides of elbows and knees) are the most commonly affected regions in people.

Atopic dermatitis often occurs together with other atopic diseases like hay fever, asthma and conjunctivitis. It is a familial and chronic disease and its symptoms can increase or disappear over time. Atopic dermatitis in older children and adults is often confused with psoriasis. Atopic dermatitis afflicts humans, particularly young children;"

There does seem to be some connection to allergies (a very loose term anyway) and celiac. Perhaps an overworked immune system responds more easily to allergens?

Laurie

OK, I was going to stay out of this, but since it's already a runaway train...

I believe that a topical reaction to gluten is seperate to an autoimmune response caused by ingestion of gluten. This supports that belief.

I reckon I have Atopic Dermatitis, I don't reckon it's got any relation to ingestion or topical application of gluten.

No-one has satisfactorily able to explain to me how you can tell it's definitely the gluten you're reacting to in a topical product, and not one of the other ingredients.

[Jestgar]

It is a wrong thing to assume that simply because there is no "scientific" study to back up information that it must be false.

You can still post your sources. Did you read this somewhere? Or is it only your opinion?

Just tell us what you're basing your conclusions on.

[mattathayde]

OK, I was going to stay out of this, but since it's already a runaway train...

I believe that a topical reaction to gluten is seperate to an autoimmune response caused by ingestion of gluten. This supports that belief.

I reckon I have Atopic Dermatitis, I don't reckon it's got any relation to ingestion or topical application of gluten.

No-one has satisfactorily able to explain to me how you can tell it's definitely the gluten you're reacting to in a topical product, and not one of the other ingredients.

that makes sense to me (honestly i have not read all of the long scientific posts). it seems like the topical reaction is separate but not necessarily uncaused by celiac. assuming that it is true celiacs have more allergies (which i believe from personal experiences of my self and a few other diagnosed celiacs i know) that this is just another allergic reaction/ sensitivity some people get

-matt

[SGWhiskers]

I thought of this thread as I was reading the label on the soap at work today. My hands have been chapped and lizardy looking for the longest time. I was blaming the latex gloves at work. Then I was blaming the Nitrelle gloves. I found a bottle of the soap used in all the dispensers at the hospital and there it was Tocepherol Acetate. The sneaky little devil.

Not only does this explain my creepy looking hands, it also explains why grapes glutened me. Finger food with wheaty hands is no good. So, now I'll carry my latex-free gloves around along with my gluten free soap. I'm wondering if I can figure out liquid soap on a rope for traveling between patient rooms.

Just one more reason to "look out for gluten in ..."

Best wishes in on your quest to health.

[mattathayde]

I thought of this thread as I was reading the label on the soap at work today. My hands have been chapped and lizardy looking for the longest time. I was blaming the latex gloves at work. Then I was blaming the Nitrelle gloves. I found a bottle of the soap used in all the dispensers at the hospital and there it was Tocepherol Acetate. The sneaky little devil.

Not only does this explain my creepy looking hands, it also explains why grapes glutened me. Finger food with wheaty hands is no good. So, now I'll carry my latex-free gloves around along with my gluten free soap. I'm wondering if I can figure out liquid soap on a rope for traveling between patient rooms.

Just one more reason to "look out for gluten in ..."

Best wishes in on your quest to health.

there is a soap that is like the dissolve on your tongue medications/breath fresheners, i have no idea if they are gluten-free but that might be an option, they come in very small packets that can slip in your pocket (they are made to get by the tsa liquid regulations). i know thinkgeek.com has them but i am sure they can be had at other places, might be an option

-matt

[Gemini]

ok so i am a bit confused, i see a lot of this type of warning here yet it looks like the list of those things that contain gluten is much much smaller than those that dont. from my quick research it looks like every major brand of tooth paste is gluten-free and while i havent gotten to look into it much it seems like most soaps,body washes, shampoos, etc are gluten-free (and even if they are not would it really by that much of an issue, i guess i could see for some items it being more than others but your skin wont absorb it).

i guess i am just kind of thinking out loud here but it seems like it is emphasized much higher than the threat is.

discuss...

-matt

matt......you have been doing your homework! This issue has been discussed over and over and what it really boils down to is personal preference. You are correct, there are many toiletries and toothpastes that do not contain any gluten so the threat is not as profound as many might think. There is also the issue that many people have a wheat allergy on top of Celiac, which gives them a topical reaction and this is not the same thing as an internal, Celiac reaction. Two different animals entirely but many people can confuse the issue and think they are being glutened topically. It is entirely feasible that anyone with Celiac may stand a good chance of having an additional wheat allergy and then you would have to be careful about topical products.

I was end stage Celiac, down to 98 pounds at time of diagnosis and I do not check toiletries for gluten....except anything that goes on the lips, for obvious reasons. I have had an amazing recovery and show no gluten exposure in my blood work so that has convinced me that, unless you have a wheat allergy also, or you eat shampoo, topical gluten is not a threat for a Celiac. I haven't even had any problems at the dentist with anything used but in my research discovered there are not many products you have to worry about.

If you feel more comfortable going entirely gluten-free, then by all means do so and don't worry about it. However, I have found it is not necessary for me and I am about as sensitive as a human can get to gluten.

[conviviality]

It does SEEM like there are a lot of products that are gluten-free. I didn't pay attention to my toiletries at first. Then I bought a new shampoo because I loved the smell of it. I was so excited to use it. After a few uses I started to notice that my scalp was really itchy. I finally took the time to sit down with the bottle and read the 50 ingredients on the label. Hydrolized wheat protein. Uugh. Expensive shampoo. Giant bottle from Costco.

Also, they use names on the bottles that may not be so telltale as that one. It is hard to find the time to email every single company of the many products used in my household to determine if they are all gluten-free.

That is why people ask on this forum. Sometimes it is easier when you suspect something to just come here and ask. Also, I don't always trust the labels or what the companies tell me. For example, Rice Dream is certified gluten-free, but made my child sick on an otherwise gluten-free diet for 8 months before I figured it out on THIS forum.

So we should all realize that no matter how many things say gluten-free, or simply do not list a gluten ingredient on their label, that this forum can prove to be so incredibly valuable for those suffering from celiac.

Matt, it is not that it is emphasized here. It is simply that the labels are long, not always telltale and you can't always count on what the company says even if gluten-free is printed right there on the label. I am grateful that this forum exists because we can do so much more to combat celiac as a group with our shared knowledge and experiences than we could ever do alone.