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Skin Absorption Of Gluten


lbd

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lbd Rookie

The point of starting this post was to give both sides of this issue a chance to back up their statements with real research references. I looked for research on both sides of this issue and could find nothing to back up either claim directly. I could find nothing backing up the claims that gluten cannot be absorbed through the skin because it is "too big" as is claimed on several websites or that it has to be ingested as has been claimed by several here. Conversely, I cannot find any research that shows that gluten is absorbed either. I did find lots of references to rather large molecules being carried into the body by carrier molecules and I did find a very interesting reference about how sodium lauryl sulfate (a common ingredient in most shampoos, etc) denature proteins. If gluten could be denatured by SLS, then is it possible it is changed enough structurally to allow absorption? I also found information that lipid (fat) carriers are very successful at carrying other molecules into the skin. Dermal patches often carry very large molecules into the skin and then systemically throughout the body (hormones and nicotine aren't much good if they just stay in the skin, are they?).

My point is that there should be a place on this forum, as there is on other forums, where people can talk in a civil manner to each other and discuss the science without being attacked or made to feel a fool if they mention what is happening to them. Part of being a good scientist is having an open mind. New discoveries are not made based on what has always been accepted. I teach my science students to question everything and question authority - sometimes those that claim to know the most know the least.

Do I know if one can get glutened by topical products? No, I don't and I would never presume to tell those that feel they are that it cannot be so, because there is NO research out there indicating one side or the other is correct! Do I know if the reactions they are having are autoimmune or allergy? Again, no clue. What I do know is that both are immune system responses. Perhaps the skin and gut react differently when threatened by a toxin. Both are open to the outside world and have to react quickly to threats. Celiac "disease" is defined as autoimmune, but I wonder if anyone has looked into whether the villi are destroyed or whether this is the body's final way of protecting itself against absorbing a toxin with the unfortunate side effects of not absorbing other nutrients? The point is, no one really knows, so how can any of us claim to be experts, including so-called celiac disease doctors! The research is just not there.

I am becoming more and more convinced that gluten is a toxin to everyone. Period. This arguing about who is more sick or more diagnosed or silent or whatever is ridiculous. We are all looking for answers that the research community is not willing to find right now and probably won't be until there is money involved. So the answer would seem to be to find what we can in the research that is out there, ignore all the claims by whoever that base their opinions on opinions, and get on with it.

Laurie


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rinne Apprentice

We are all canaries. :)

I won't repeat what so many of you have eloquently expressed, I will only add that from my point of view those who are less sensitive might benefit from those of us who are more sensitive, they might trust that if we say there is a problem there is a problem. :lol:

Proof? There is no proof one way or the other, just as for many of us for years there was no proof that gluten was a problem, some of us have learned that sharing our actual experience is far more valuable than any study or supposed proof. I look around me and see many people who would benefit greatly from getting off gluten but they won't because there is no proof. :lol:

I touch bread, I make sandwiches every day for a crowd and I do not have a problem with it, I don't even think I would have a problem rubbing it all over my body :P but using dish washing soap with wheat germ oil that turned my hands red and painful, no.

Sailing Girl Apprentice
Perhaps the skin and gut react differently when threatened by a toxin. Both are open to the outside world and have to react quickly to threats. Celiac "disease" is defined as autoimmune, but I wonder if anyone has looked into whether the villi are destroyed or whether this is the body's final way of protecting itself against absorbing a toxin with the unfortunate side effects of not absorbing other nutrients? The point is, no one really knows, so how can any of us claim to be experts, including so-called celiac disease doctors! The research is just not there.

I am becoming more and more convinced that gluten is a toxin to everyone. Period.

Laurie, that is an amazing theory! We may never know if it's true or not (as you say, the research money just isn't there). But it wouldn't surprise me.

I, too, think gluten is poison for everyone, and I don't like calling "celiac" or "gluten intolerance" a disease. You wouldn't tell someone who's slowly being poisoned by arsenic that they've got "arsenic intolerance," would you? No, you'd tell them they'd been *poisoned* and then you'd get rid of the arsenic and treat the symptoms of the poisoning until they returned to full health! Same for people who are allergic to peanuts (I know, I know, it's an allergy, not an intolerance, but bear with me for the sake of the analogy) -- you don't tell them they have "peanut disease," you tell them to avoid peanuts and then treat the symptoms if they accidentally ingest peanuts.

I wasn't as sick as many people were when I went off gluten for good. But I saw what it did to my daughter, who was failing fast. Perhaps that makes me much more cautious than some people. But to me, it's just not worth taking the chance of using gluten-containing products in my home or on my body. Even if I hadn't been glutened by them (and I have), it's an unnecessary risk that easily can be eliminated just by buying gluten-free products.

Perhaps future research will show that we all could have been eating up to half-a-donut a day without "damaging" ourselves ... but perhaps future research will show that we achieve our best health only by being as 100% gluten-free as possible in as many ways as possible (including topical products).

Personally (and this is my choice and may not be yours), I'd rather err on the side of caution -- and I'm grateful for the fact that I react to tiny, tiny amounts, so that I can *know* when I'm potentially, possibly doing damage.

sbj Rookie
I am becoming more and more convinced that gluten is a toxin to everyone. Period . . . So the answer would seem to be to . . . ignore all the claims by whoever that base their opinions on opinions, and get on with it.

You do realize, don't you, that you just urged all of us to ignore you? :D

Let's face it, IMO, tallgirl is the one who is being attacked. She is respectfully disagreeing with some opinions here that aren't based on fact (AKA peer-reviewed scientific studies) and she is being repeatedly told that she is 'attacking' people for her simple disagreement. I respectfully disagree - she hasn't attacked anyone. This forum is about expressing opinions and sharing information and that is all that is being done here. She is being attacked for merely relaying what most medical professionals feel about the topical ramifications of gluten. If we can't express the opinion of Dr. Green or the Mayo clinic then where does that leave us? I'm not sure how anyone reading this can tell if someone is angry but I am betting that no one is particularly incensed. It has been a good discussion.

Mike M Rookie
Do you have autoimmune issues other than the villi destruction that was found when you were diagnosed? For those of us who have multiple system impact including organs other than just the gut it is obvious that the autoimmune response has been triggered when it is.

I do agree with you that gluten is not absorbed by INTACT skin but the residue that is left behind by many soaps. lotions, shampoos etc is enough when it comes into contact with a mucous membrane either in the mouth, nose, eyes etc to set off the autoimmune reaction. There are varying levels of impact in those of us who have been diagnosed. Some were fortunate and got diagnosed before the body had time to attack organs other than the gut, some of us had antibodies attacking various other organs for many, many long and painful years before we knew we had celiac. I am one of the latter. The gut distress for me is only a small part of my reactions and in reality for me the least bothersome. The reappearance or flares of the other autoimmune issues like the arthritis and the movement and brain issues makes a glutening obvious and it takes very little gluten to bring them on.

It is best IMHO to be super strict at first so folks are able to tell their bodies reaction. It will differ IMHO depending on how much autoimmune issues are present for each individual.

I do not live my life in a box paranoid about even touching a door handle but I do take precautions like rinsing my hands and avoiding things I have an obvious reaction to but I really take offense at my actions being referred to as being 'crazy'. It is possible to give your opinion about matters without insulting others.

Ravenwoodglass, I can't offer any peer reviewed study of any kind, only my real life account. With regards to skin absorption, being an EE patient also, I had skin prick and patch testing done. This was done at Cincinnati Childrens hospital (they specialize in EE diagnosis and treatment). Long story short, they tested 28 different food items via patch testing on my back. Nothing was positive except for oats, They blistered me and after a couple of days actually bled and the wound took about 6 weeks to heal. I now have a permanent scar that looks like a cigar burn on my back. The Doctor that did the testing was very surprised and said he did not expect to see this. His nurse said it was the worst reaction she had seen in years. I actually had ringing in my ears and felt miserable (flu like symptoms) for at least a week after this. Now, The Doctor knew I had celiac and has now confirmed that I have ASE or Avinin Sensitive Enteropathy with a cross over reaction to wheat, barely and rye due to the closeness of the proteins and according to him, a very uncommon form of Celiac (I really have my doubts it is as rare as it is said to be). This reaction according to him, is a Type IV hypersensitivity mediated by T cell response reaction. This is what celiac is, a T cell mediated delayed response that causes the body to attack itself. Can the proteins be absorbed via the skin? Yep, sure can. Not sure why others think this is not possible.All the best, Mike

ravenwoodglass Mentor
Ravenwoodglass, I can't offer any peer reviewed study of any kind, only my real life account. With regards to skin absorption, being an EE patient also, I had skin prick and patch testing done. This was done at Cincinnati Childrens hospital (they specialize in EE diagnosis and treatment). Long story short, they tested 28 different food items via patch testing on my back. Nothing was positive except for oats, They blistered me and after a couple of days actually bled and the wound took about 6 weeks to heal. I now have a permanent scar that looks like a cigar burn on my back. The Doctor that did the testing was very surprised and said he did not expect to see this. His nurse said it was the worst reaction she had seen in years. I actually had ringing in my ears and felt miserable (flu like symptoms) for at least a week after this. Now, The Doctor knew I had celiac and has now confirmed that I have ASE or Avinin Sensitive Enteropathy with a cross over reaction to wheat, barely and rye due to the closeness of the proteins and according to him, a very uncommon form of Celiac (I really have my doubts it is as rare as it is said to be). This reaction according to him, is a Type IV hypersensitivity mediated by T cell response reaction. This is what celiac is, a T cell mediated delayed response that causes the body to attack itself. Can the proteins be absorbed via the skin? Yep, sure can. Not sure why others think this is not possible.All the best, Mike

You may very well be right that the proteins can be absorbed, I don't know perhaps my reaction does come from absorption as well as 'injestion'. An old fashioned test for DH was to use an iodine patch on unbroken skin which sounds similar to the patch testing you had done. I'm tempted to strap a wheat germ soaked bandaid to my arm to see what happens. :D Not that that would be terribly scientific in itself but I am a curious sort.

I do agree this issue needs much more scientific exploration which is unlikely to happen any time soon. At the moment I am just happy that it seems more folks are being diagnosed sooner and doctors are getting better at recognizing atypical presentations. Perhaps when the numbers get high enough more research will start to take place. I wonder if the cosmetics industry will be the place it comes from.

Mike M Rookie
You may very well be right that the proteins can be absorbed, I don't know perhaps my reaction does come from absorption as well as 'injestion'. An old fashioned test for DH was to use an iodine patch on unbroken skin which sounds similar to the patch testing you had done. I'm tempted to strap a wheat germ soaked bandaid to my arm to see what happens. :D Not that that would be terribly scientific in itself but I am a curious sort.

I do agree this issue needs much more scientific exploration which is unlikely to happen any time soon. At the moment I am just happy that it seems more folks are being diagnosed sooner and doctors are getting better at recognizing atypical presentations. Perhaps when the numbers get high enough more research will start to take place. I wonder if the cosmetics industry will be the place it comes from.

I could not agree more. The skin is the largest organ of our bodies. I had a GI tell me the skin is nothing more than the intestines turned inside out. Sounds kind of gross. Back to the skin patch, the GI found the EE, sent me to Cincinnati Childrens and they did wonders. I am sure that I would more than likely never have known about the oats and never healed if I had not had the skin reaction.

If you want to try it, it was a ground up moist paste that they used in about 1/4" round aluminum cup. I would make sure it is moist and maybe use a band aid that is sealed all the way around. If it helps, the ringing in my ears is the absolute first sign that I have been glutened or "Oated" LOL! guess I should say AVININ'ED I get a ringing in my ears in about 15-20 minutes after getting into these items. It took almost exactly 45 minutes after the placement of the patches on the skin and then I got the ringing and it was down hill from there. They left the patches on for 48 hours. The protein crosses from the skin into the blood no question. There are so many unknowns out there with regards to this disease. It is getting better. All the best, Mike


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debmidge Rising Star

This topic makes me curious now to do an "at home patch" on me and my husband and see how/if each of us have a skin response and if my husband has a "glutened" response in any other way. My test would be showing how a non-celiac would respond, if at all. However, I do have allergies to plants and my test might show some irritation of some sort.

Does anyone who had allergy testing ever get a "skin patch" test for the substance "gluten?" I would imagine that if there's a skin patch test for this wouldn't the skin react and wouldn't that be another way to diagnose celiac?

Tallforagirl Rookie
Do you have autoimmune issues other than the villi destruction that was found when you were diagnosed?

Well my celiac disease is an ongoing autoimmune issue, because if I ingest gluten it provokes an autoimmune response.

I do not live my life in a box paranoid about even touching a door handle but I do take precautions like rinsing my hands and avoiding things I have an obvious reaction to but I really take offense at my actions being referred to as being 'crazy'. It is possible to give your opinion about matters without insulting others.

As I said in another post, I have a lot of sympathy for those who are highly symptomatic. Some of them have other issues going on such as additional sensitivities and allergies which is also hard on them. But it's not helpful to always blame celiac disease for any and every adverse health issues you may have.

WW340 Rookie

I absolutely have a skin reaction to gluten that is not a traditional allergy. When I had my celiac crisis that led to my diagnosis, one of my symptoms was a constant all over itch that I had 24 hours a day. It felt like hives, but there was no rash.

I was tested for allergies to wheat, because I was already suspecting wheat as a culprit in my symptoms, because they were so much worse the days I ate shredded wheat or triskets. All of my allergy tests came back negative. No food allergies at all. However, my celiac blood tests were sky high.

While all my other symptoms went away on the gluten free diet, the itch would not abate until I finally eliminated gluten in all my personal care products. Like magic it went away.

Now, my first symptom of glutening whether in accidental food contamination, or accidental use of gluten containing personal product, is the terrible itch. I know I have a problem with having gluten on my skin, and I suspect it is an autoimmune reaction, as it doesn't matter where the gluten touched my skin, or if I ate it, I itch all over.

I don't know why it is believed that only the gut reacts, when it has been proven that there are brain lesions, fertility problems, skin rashes and a host of other problems due to the autoimmune response to gluten.

ravenwoodglass Mentor
As I said in another post, I have a lot of sympathy for those who are highly symptomatic. Some of them have other issues going on such as additional sensitivities and allergies which is also hard on them. But it's not helpful to always blame celiac disease for any and every adverse health issues you may have.

I am well aware of that and that is why I always urge folks to check with a doctor if symptoms do not abate. I also strongly urge folks to get tested for the disease before they go gluten free. I am one of the unlucky ones who don't show up in blood work so I had to go gluten free the hard way, through a true months long elimination diet guided by an MD. It was a last resort as I was slowly dieing in front of my children eyes. I was then almost hospitalized by my second GI demanded gluten challenge which caused a GI bleed. I am very in tune with my body and my reactions to gluten are clearly reactions to gluten and the autoimmune reactions are clearly reactions to gluten as they only rear their heads when glutened. Which now does not happen very often as I am superstrict most of the time. It is best IMHO to be as strict as possible at first and then add stuff back in and watch for a gluten reaction. Celiac is much more than just a GI disease and for many the gluten symptoms are not just an upset stomach.

It is also not helpful to imply that those that react to topicals are drinking them or that they are going to drive themselves crazy. You can simply state your opinion without saying things like that. If you feel safe and don't react to topicals that is wonderful but there are many here that do. It is not our imagination or a topical allergy it is part of the celiac autoimmune reaction.

lbd Rookie
You do realize, don't you, that you just urged all of us to ignore you? :D

Sbj, there are times when I wish you would ignore me because every time I (and others) post on this site, you and tallforagirl jump in to give us your "we are victims here" speech punctuated by several smiley faces and insults as if that makes everything okay. Please do ignore me in the future.

Peter Green is a standard celiac doctor. Good for him, but he really doesn't think outside the celiac "disease" box. Same with the Mayo clinic. The references you gave were opinions, nothing more.

Laurie

Mike M Rookie
However, my celiac blood tests were sky high.

I don't know why it is believed that only the gut reacts, when it has been proven that there are brain lesions, fertility problems, skin rashes and a host of other problems due to the autoimmune response to gluten.

I too also had a sky high celiac blood panel result. There must be a connection with this. I was not allergic to wheat or oats for that matter via a skin prick test. Just almonds and squash. When first diagnosed, my second symptom after the ear ringing was my elbows itched like mad. If it was really bad, my knees itched and my scalp would get small blisters on top. This is DH. Now, I get the ringing still, but the "itch" shows up around 24 hours later and then the gut issues begin. I am sure it is a combination of getting better at avoiding gluten (and oats for me) and this is why it seems to be taking longer for a reaction and it is not as severe of symptoms.

Ravenwoodglass, I just last year developed an upper GI bleed. Scarey stuff......I found out the cause, it was contaminated gluten free flour that also had the certified gluten free oats (manufactured/ground, in the same facility on the same equipment).

Debmidge,

Yes, I think this could be another extremely cheap and accurate way to test for celiac in some cases. If nothing else, possibly a much safer way than doing a full blown (ingested) gluten challenge. All the best, Mike

Lisa Mentor
I don't know why it is believed that only the gut reacts, when it has been proven that there are brain lesions, fertility problems, skin rashes and a host of other problems due to the autoimmune response to gluten.

Because the gut immune response to gluten is called Celiac Disease. It is widely known that gluten can create havoc in other areas of the body, but it then, is no longer called Celiac Disease. Gluten Ataxia can occure in other parts of the body. A gluten response which effects the skin, is not called Celiac Disease, it is called Dermatitis Herpetiformis.

Mike M Rookie

Dermatitis Herpetiformis (DH) is an important associated disorder or complication of celiac disease.

Lisa Mentor
Dermatitis Herpetiformis (DH) is an important associated disorder or complication of celiac disease.

Yes, DH is closely associated with Celiac Disease, but not exclusive too.

WW340 Rookie
Because the gut immune response to gluten is called Celiac Disease. It is widely known that gluten can create havoc in other areas of the body, but it then, is no longer called Celiac Disease. Gluten Ataxia can occure in other parts of the body. A gluten response which effects the skin, is not called Celiac Disease, it is called Dermatitis Herpetiformis.

I am not sure what your point is here, Momma Goose. The fact still remains that these things are caused by gluten, which is the main point of the thread.

Some of us do have a sensitivity to gluten that transends the gut. Those of you that don't have that manesfestion are invited to attest to the fact that you don't have it, just don't try to convince me and everyone else, that my experience is not real and has to be unrelated to gluten, or is some other kind of allergy.

It was my GI doctor that said the itch I had was related to Celiac disease. Look up the symptoms of all over itching, and you will find many referenences to celiac disease. That is how I found my diagnosis to begin with.

From the Celiac Sprue association website:

What is Dermatitis Herpetiformis?

Dermatitis Herpetiformis (DH) is an important associated disorder or complication of celiac disease which is manifested in the form of a skin rash. There is strong evidence that the changes in the intestinal mucosa and the immunologic findings in the majority of patients diagnosed with DH are identical with those found in celiac disease. Gluten has been found to have a close relationship with this skin rash. DH is often referred to as "celiac disease of the skin" while celiac disease is referred to as "celiac disease of the gut."

Lisa Mentor

I am not sure what your point is here, Momma Goose. The fact still remains that these things are caused by gluten, which is the main point of the thread

...................................

Exactly! I have said nothing to the contrary, nor is my post argumentative. My point is that gluten responses that occur in different areas of the body (besides the small intestines), are medically referenced by other names. Celiac Disease response is contained in the small intestines. I, in no way, diminished any gluten response found else where in the body, or those that suffer.

No need to over-analyse. :)

ravenwoodglass Mentor
...................................

My point is that gluten responses that occur in different areas of the body (besides the small intestines), are medically referenced by other names. Celiac Disease response is contained in the small intestines. I, in no way, diminished any gluten response found else where in the body, or those that suffer.

No need to over-analyse. :)

The NIH actually does consider DH to be celiac disease. Gluten ataxia is also celiac disease. Celiac disease can manifest in more than just the gut. Just because it is not GI related doesn't mean it is not celiac. You have also mentioned that DH can be caused by more than gluten I would be interested in seeing links to what other causes there are. DH when diagnosed is considered a diagnosis of celiac I have never heard that it was iffy at all from anywhere but you.

Open Original Shared Link

"Intense itching. A burning sensation. Clusters of small blisters that persistently break out on the elbows, knees, buttocks, back, or scalp. These symptoms are the hallmarks of dermatitis herpetiformis (DH), a skin manifestation of celiac disease. DH affects 15 to 25 percent of people with celiac disease, and these people typically have no digestive symptoms of the disease."

Mike M Rookie
Yes, DH is closely associated with Celiac Disease, but not exclusive too.

Dermatitis Herpetiformis (DH) is exclusive to celiac disease per my Doctor. The research I have done confirms this. Very current research is now showing that the Iga deposits in the skin, began in the gut via T cell immune response and works out from there and is deposited into the skin. Mike

Lisa Mentor

"Dermatitis herpetiformis has also been reported to occur in people with vitiligo, type I diabetes, Sjogren

lbd Rookie

I guess we can safely say that the DH that is being referred to on this forum at least is related to gluten sensitivity. I am still not convinced that celiac disease is an actual disease. I wonder where that initial determination came from?

The genetics that predispose one to gluten sensitivity are in place because you are from a group not exposed to gluten grains early in your ancestry and have genes that reflect that- do we agree on that? Everything I have read about gluten sensitivity suggests this is so. If so, then you (universal you here, not any one person) do not have damaged genes in any way. There is no mutation or change that would link it to a disease or disorder, like lacking the CTFR protein in cystic fibrosis or the dystrophin gene in muscular dystrophy or the blood-clotting factors in hemophilia, all of which are due to mutated genes somewhere back in time. If your genes are not damaged, then your body is merely doing its job - reacting to a toxin that we were never meant to ingest. Maybe this is why so many other countries list many more genes as being linked to gluten sensitivity. Having DQ2 or 8 may mean that you are even more "primitive" in gene type - this is not meant as an insult - it really means that you are the original, which to me is a compliment :D

I have DQ1 and DQ2, but the 2 less associated with celiac. My sister on the other hand, has both DQ2s. She has far more intestinal problems than me - I have the neuro stuff.

This is beginning to ramble, because I am thinking out loud here. But if the above it true, then why do we refer to this as a disease at all? If it is a response to a toxin, then we should treat it as such. Wouldn't that remove this kind of prejudice of being non-celiac or celiac, diagnosed or non-diagnosed. etc? I don't have a disease - my poor body is just tired of me feeding it gluten for 50 years and having to try to deal with that. We are well equipped to deal with toxins to a point, but any body will rebel at the overload we present it with in processed foods, environmental toxins, and an insistent little protein called gluten. I think that if we could shift the focus away from this being a disease to one of dealing with a toxic agent, there would be a lot more progress and less bickering. Maybe.

And, yeah, I could look up refs for some of this, but I don't really feel like it right now, so just take it as my opinion, for what it's worth.

Laurie

raisin Enthusiast
"Dermatitis herpetiformis has also been reported to occur in people with vitiligo, type I diabetes, Sjogren’s syndrome, dermatomyositis, and rheumatoid arthritis."

Not all people with Celiac Disease will have DH, nor will all people with DH will have Celiac Disease. Are they still one in the same?

Haven't there been about a zillion medical reports claiming all of those can be classically related to celiac disease, as well as claiming that DH is exclusively caused by gluten..? Even the link you provided lists the treatment as "gluten-free diet."

It sounds to me like you just want to argue semantics, considering everything else you have said. But there is a reason people don't appreciate semantics after a certain point.. Whether we call it "celiac" or "skin glutinification," it doesn't change the actual topic or points. The debate was about the potential effects of gluten and whether or not people who are sensitive to gluten can be harmed via skin absorption, not just "celiac."

Lisa Mentor
Haven't there been about a zillion medical reports claiming all of those can be classically related to celiac disease, as well as claiming that DH is exclusively caused by gluten..? Even the link you provided lists the treatment as "gluten-free diet."

It sounds to me like you just want to argue semantics, considering everything else you have said. But there is a reason people don't appreciate semantics after a certain point.. Whether we call it "celiac" or "skin glutinification," it doesn't change the actual topic or points. The debate was about the potential effects of gluten and whether or not people who are sensitive to gluten can be harmed via skin absorption, not just "celiac."

Yes, of course DH can be controlled by a gluten free diet. The key word, you used yourself, is RELATED! Something that is related or associated with a disease is not the same as the disease. A person with DH does not necessarily have Celiac. A person with Type 1 Diabetes does not necessarily have Celiac, or RH ....That is all I was trying to say!

I was asked to list other illnesses that might be associated with DH other than Celiac. I did. Call it semantics, or whatever you will.

I have no intention of arguing, but apparently others do enjoy the challenge. Carry on!!!!!

bear6954 Apprentice

I remember reading somewhere that gluten was not absorbed through the skin. So I allowed my son to play with playdoh two days in a row. I watched him both times - he did not eat it. I washed his hands, cut his nails, scrubbed his hands and arms again, changed his cloths and cleaned the entire area. He still got glutened. My neighbor even noticed. His belly swelled up more than normal and he was a very mean monster for about 24 hours. That is the end of playdoh. I make my own now and it works great. I am a firm believer it can get through the skin somehow.

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    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
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