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Skin Absorption Of Gluten


lbd

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lbd Rookie

Since there seem to be so many discussions debating whether or not gluten is absorbed by skin, I decided to do a little research on my own. Interestingly, despite claims by many that gluten cannot be absorbed, I could find no research to support that. (Please feel free to list sources negating that statement.)

I did, however, find several published articles about skin absorption and how materials absorbed through the skin could produce a systemic effect (in other words, affect the entire body system). While no studies that I could find discuss gluten specifically, there were several to back up that many materials can be absorbed through the skin. Here is one:

Open Original Shared Link

As this article states, skin absorption varies depending on what it is being exposed to and the conditions under which the skin is exposed. Lipophilic compounds are more readily absorbed (lipophilic = attracted to fat). It would make sense that in conditioners and soaps with lipid bases, that some other molecules may be carried into cells in the process. "Lipophilic compounds can be retained in the skin for hours, and even days, post exposure and slowly seep into the general circulation (or in vitro into the receptor fluid)."

There are many medications that are given through transdermal patches. These include nicotine patches and hormone patches and human growth hormone (a large protein) patches. Open Original Shared Link references patent applications for HGH patches.

Is any of this definitive proof that gluten can be transported through dermal cell membranes? No, because apparently those studies have not been done. However, stating that gluten cannot be absorbed because it is a large protein or because it must be ingested doesn't seem to have scientific evidence to back it up. I'd like to see references stated that show the other side of the coin and back up claims that it cannot.

I'm not sure why I am posting this - I said I wouldn't post any more, but I love to investigate science related items and I thought this might be useful to some.

Laurie


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ravenwoodglass Mentor

Thanks for posting this Laurie. Glad your still around.

Something a lot of folks also forget is that the body has a lot of mucous membranes other than just the gut,. Moucous membranes which gluten has been proven to be absorbed by. They line the mouth, nose, eyes, rectum, urethra and the vaginal tissues. When using gluten topicals like makeup, soaps and shampoos or lotions we can and do come into freqent contact with those membranes. If we have a gluten residue on our skin it can easily come into contact with those membranes. If we have gotten to the stage of autoimmune impact it takes very little to start the antibody cascade throughout the system.

Folks that are less sensitive seem at times to like to make those of us who are feel like we are some kind of nut case. Recent posts have borne out the fact that some of us are made uncomfortable by their behavior as it often goes past bordering on rude. Unfortunately some are allowing these folks to chase them off the boards. I hope you don't.

N.Justine Newbie

It s not just about absorption either -- folks with DH and have sensitive systems also have topical responses similar to an allergic reaction -- treating gluten as a toxin is still deemed best and safest

mushroom Proficient

My husband once put his hands on the face of a woman to give her a kiss on the cheek and she recoiled in horror and spent the next ten minutes in the bathroom scrubbing her face, afraid he had eaten a sandwich for lunch, Yep, she was a DH sufferer.

lbd Rookie

Thanks for the welcome back, though I will limit my posts to areas that are not subject to abuse, I hope. My impetus for return was that I often see claims that gluten is too large of a protein to be absorbed by skin, yet I have seen no links, nor could I find any searching for myself, that backs up those statements. I have known for years, even before I knew about gluten, that some shampoos, etc. definitely caused a reaction on my scalp. Not an intestinal one, because that is not how I manifest gluten symptoms anyway, but a definite reaction none the less. Allergic or not, my skin was reacting. After discovering toxic gluten, I found that those shampoos with wheat based products were a definite no-no for me. Interestingly enough, if I ingest gluten or too much casein, I get a similar reaction on my scalp. And I don't EAT my shampoo :P

Certainly, everyone knows about patches being used as a way to introduce hormones into the system. Many hormones are large molecules. Skin cells are not impervious to substances, though crossing the stratum corneum layer in some areas is difficult, so manufacturers of patches use lipid carriers to help the process. Shampoos and conditioners and soaps have lipid and other chemical components that could certainly take other chemicals along for the ride. And the one reference I came across definitely said that molecules can cross the skin barrier and enter the system as a whole. If it gets to the bloodstream or lymph system, it can certainly get to other areas of the body.

I guess we could do an informal trial and place gluten patches on our skin to see what happens. Anyone up for that? :P

Laurie

lizard00 Enthusiast
I guess we could do an informal trial and place gluten patches on our skin to see what happens. Anyone up for that? :P

LOL That gave me quite a chuckle. :D

I find this topic to be fascinating, as there are two definite groups of people are believe they are right. I personally stay away from topical gluten as well. I threw away a face cream that someone gave me because it had wheat germ in it. I am certainly not going to ingest it, but I can assure you that I would've glutened myself if I used it. My shampoo has tea tree oil in it, and EVERY TIME I wash my hair, my lips tingle. And NO, I don't eat shampoo either. That was enough for me.

My doctor told me to use only gluten-free personal care items, I'm sure for all the reasons above. He didn't say it was or was not absorbed through my skin, but it's just so easy to contaminate yourself.

Tallforagirl Rookie
...folks with DH and have sensitive systems also have topical responses similar to an allergic reaction -- treating gluten as a toxin is still deemed best and safest

This is the crux of the matter. It is NOT a Celiac response that you have if you react to gluten on your skin, it is an ALLERGIC response. You do not provoke the autoimmune response, you do not suffer long term damage to your gut, unless you swallow the gluten.

This is not to say that I don't sympathise with someone who has an unpleasant reactiont to a topical substance, and I wouldn't advise them to carry on using the product regardless, of course not.

But for topical products, the same rules apply to Celiacs as to the general population, if you get an unpleasant allergic reaction don't use that product any more.

Same goes for those with DH. They may have a topical allergic reaction to gluten, and it may irritate their DH, but it is not going to absorb through their skin and damage their gut.

I keep posting about this because I feel like there needs to be a voice of reason on this issue. For someone newly diagnosed reading this board, they need to know what to worry about and what not to worry about. Absorbtion of gluten through the skin is not something a Celiac needs to concern themselves with, any more than someone without celiac disease.

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lbd Rookie

Neither of those links were to peer-reviewed research. Both were links to question and answer online sessions with one doctor's opinion. Do you have links to peer-reviewed research to back up your opinion that gluten cannot be absorbed through the skin? I looked and could not find any research backing up that opinion. I'd love to see if any real research has been done on this issue. In the meantime, anyone's opinions are just that.

Laurie

raisin Enthusiast

Ahh, I love the information here! I do get skin reactions, and gut reactions, but I get other symptoms, too. I believe I have genuinely been glutened both ways, and MayoClinic has a horrible history with celiacs, if I'm not mistaken. I openly avoid touching most public surfaces (tend to cover all possible skin i.e. light jackets, leggings) or even other people unless I know they washed with gluten-free soap first.

Until I read posts here, it had not even occurred to me that there were celiacs that didn't react to topical gluten, much less that it was considered "myth."

MaryJones2 Enthusiast
Neither of those links were to peer-reviewed research. Both were links to question and answer online sessions with one doctor's opinion. Do you have links to peer-reviewed research to back up your opinion that gluten cannot be absorbed through the skin? I looked and could not find any research backing up that opinion. I'd love to see if any real research has been done on this issue. In the meantime, anyone's opinions are just that.

Laurie

I am not aware of any peer reviewed research on the topic either. I would love to see more research on this as I've always had a few nagging questions. I would also like to see more research on inhaled gluten.

sbj Rookie
This is the crux of the matter. It is NOT a Celiac response that you have if you react to gluten on your skin, it is an ALLERGIC response. You do not provoke the autoimmune response, you do not suffer long term damage to your gut, unless you swallow the gluten . . . I feel like there needs to be a voice of reason on this issue. For someone newly diagnosed reading this board, they need to know what to worry about and what not to worry about. Absorbtion of gluten through the skin is not something a Celiac needs to concern themselves with, any more than someone without celiac disease.

Open Original Shared Link

Open Original Shared Link

Thanks so much, Tallforagirl, for the information. I agree that newcomers need to also hear a voice of reason. I'm reminded of the purported link between deodorants and breast cancer. I hope that you do not become the victim of abuse here! I recall that some folks on this forum were very upset that some others were asking for proof and links and such. Now it seems as if the shoe is on the other foot. :D

As far as studies, this sounds about right:

"Authorities in percutaneous absorption have shown that there is a limit to the size of a molecule that can be absorbed through the skin. The gliadin molecule, the part of gluten that is believed to cause celiac and dermatitis herpetiformis, is considered too large to be absorbed. To my knowledge there have been no actual studies on absorption of the gliadin molecule and to my knowledge none are planned."

Just as there are no studies that show that gluten CAN be absorbed, I don't believe there are any showing the contrary. And I'm not gonna spend my time looking. I hope that someone can find a definitive answer, I believe I've already read it and heard it (I'll put my faith in Dr Green!), but I don't believe this discussion will ever end.

lizard00 Enthusiast
As far as studies, this sounds about right:

"Authorities in percutaneous absorption have shown that there is a limit to the size of a molecule that can be absorbed through the skin. The gliadin molecule, the part of gluten that is believed to cause celiac and dermatitis herpetiformis, is considered too large to be absorbed. To my knowledge there have been no actual studies on absorption of the gliadin molecule and to my knowledge none are planned."

Just as there are no studies that show that gluten CAN be absorbed, I don't believe there are any showing the contrary. And I'm not gonna spend my time looking. I hope that someone can find a definitive answer, I believe I've already read it and heard it (I'll put my faith in Dr Green!), but I don't believe this discussion will ever end.

I'm assuming your quoting Dr Green there. While he has made incredible strides in the field of Celiac research/awareness, I don't put faith in any doctor who makes a blanket statement. I am not about to argue with people who say they react to gluten topically, as there is no research to state otherwise. The opinions of a few quoted doctors doesn't make it so. For a long time, they told us to eat margarine to avoid heart disease, when in fact, it was a cause. Doctors used to say that a celiac could eventually eat wheat again, once they were healed; we now know this to be untrue. We learn new things daily.

Maybe Dr Green the above quote is right, and maybe gliadin is too big to pass through skin. But until they prove it to be true, is it fair to say that it is impossible and to stop there?

sbj Rookie

For the record, that is not a Dr. Green quote. However, he does address the issue in his famous book.

lbd Rookie

Again, there doesn't appear to be any actual research done on this subject one way or the other. Just because someone supposes it to be so, doesn't make it so, and that is true for both sides of the issue. I'm not claiming proof of one side or the other, but there have been statements made to people that insist that gluten cannot cause problems unless ingested based on a few doctors' opinions and yet there is anecdotal evidence to the contrary. Without actual research, I don't think people should be told they are disbelieved and that they must be drinking their shampoo or hair dye.

You are absolutely right in that I have tried to find supportive research links for the topic and I could not find any that said gluten is not absorbed through the skin, except for the same repeated opinion on several websites. I did find several peer-reviewed articles however stating that large molecules can be carried into the skin and ultimately systemically into the body depending on the carrier molecules surrounding them.

I would love to see this answered once and for all with research, but unfortunately gluten sensitivity is not a top priority for researchers. It's just not profitable enough when the cure is to go gluten free.

I think the solution would be to recommend that if you get a reaction from the product, don't use it. Much in the same vein as if you get relief from a gluten-free diet, you have your answer.

Laurie

Laurie

Tallforagirl Rookie
I think the solution would be to recommend that if you get a reaction from the product, don't use it.

Yup, that's what it comes down to.

Let's put it this way. I think we all agree there's no link between the symptomatic reaction and the autoimmune reaction, otherwise why are there so many asymptomatic Celiacs? So if you believe a Celiac will get "glutened" from simply touching the stuff, that means all of us asymptomatic Celiacs are getting unwittingly glutened every day through touching gluteney things. Especially those in mixed households.

And if this is the case, how come any of us ever get well again (proven through repeat bloodwork and biopsy) considering we're all getting so thoroughly and repeatedly glutened all the time?

raisin Enthusiast

Well obviously there is some link, or why would any have symptoms? :P

Obviously not all celiacs would be glutened. Just like not all celiacs are glutened from drinking Rice Dream. Everyone has different reactivity levels. It also must depend on how much touches you, where, the way it touches you, and how quickly you wash the skin. If I put a bunch of wheat-paste on my body, I'm more likely to react than If someone sprayed perfume containing CC-ed wheat bits on my cloths. Unless an asymptomatic person is in constant heavy contact, for example, who say's they'd be exposed enough to get glutened? There are many asymptomatic celiacs who do not heal while just on a gluten-free diet, who post here, regularly.

Tallforagirl Rookie
Well obviously there is some link, or why would any have symptoms?...Unless an asymptomatic person is in constant heavy contact, for example, who say's they'd be exposed enough to get glutened? There are many asymptomatic celiacs who do not heal while just on a gluten-free diet, who post here, regularly.

Oh, well, phew, guess that means I don't have to worry any more then. I can have that slice of cake (but just a little, and only every now and then).

Don't presume to tell me that because I'm asymtomatic, I am lucky because I can get away with having gluten, as long as it isn't "constant heavy contact" C'mon get real!

What you are saying is totally off the mark. Severity of symptoms does not equal level of damage. Think of them as two seperate effects of being a celiac. We all get gut damage when we ingest gluten, this is the very nature of the disease. Fortunately, we are not all extremely symptomatic on consumption of small amounts of gluten, but of course it is still doing damage to our intestine.

As for those who don't heal on a gluten-free diet, I don't accept for a minute that it has anything to do with their brand of shampoo (unless they swallow it on a regular basis).

raisin Enthusiast

Excuse me but when did I say you can have gluten without being poisoned?

I said different people have different tolerances levels - that statement applying to both symptoms and autoimmune responses.

You seem to have taken that example completely out of context. If it isn't constant contact, or a significant amount, the chances of it showing up in a blood test are dramatically lowered, and I applied that example to myself as well, while still implying that it is easier for me to recognize because I feel the reaction and they can't.

When I said they are related somehow, I meant the symptoms, in those who have them, are caused by the autoimmune, thus, related. I never said the levels of reaction were related. It was a "stating the obvious" joke.

And point to the obvious.. what about DH? There are otherwise-asymptomatic celiacs with DH, and many people with DH cannot touch gluten. If gluten cannot effect your autoimmune system topically, how could that be true?

Lisa16 Collaborator

It is astonishing to me how deep the feelings run on this issue. Why do you care what toiletries another person uses?

I can say that for me it seems to be very important that I keep as gluten free as possible so I have done a lot of research to find safe toiletries that I can use.

Please remember that doctors can be wrong-- even very famous ones-- and I think most of us have experienced that at least once in our lives. Or if you doubt me, peruse any history of medicine.

I really think there is so much individual variation that it is a mistake to say "we must all avoid gluten in our toiletries" but it would be an even greater mistake to say "we don't have to worry about our toiletries." The former errs on the side of caution, afterall.

I think we should all ask ourselves the question, "is there a chance I am going to get glutened from using this?" It is an individual risk. Like eating out or trying a new product with "natural flavors."

So go ahead and use any shampoo you like. It is a free country. But please remember that there does need to be a place for people who feel it is important for them to talk about gluten-free toiletries and list safe products. Please respect their opinions because you can never know what someone else has experienced. And there are certainly many, many things out there that medicine does not understand.

We need to keep open minds and open dialogues. We have all been through quite enough pain without picking at each other and when that happens it here it makes me really sad.

Lisa

Tallforagirl Rookie
Excuse me but when did I say you can have gluten without being poisoned?

No, you didn't say that, but you did say: "Unless an asymptomatic person is in constant heavy contact, for example, who say's they'd be exposed enough to get glutened?" Maybe you need to define what you mean by "constant" and "heavy"

I said different people have different tolerances levels - that statement applying to both symptoms and autoimmune responses.

And I say that the severity of your symptoms will not tell you how much of an autoimmune response you are having.

When I said they are related somehow, I meant the symptoms, in those who have them, are caused by the autoimmune, thus, related. I never said the levels of reaction were related. It was a "stating the obvious" joke.

Your symptoms are related to the fact you ingested gluten, yes, but I wouldn't agree that they're directly related to how severe your autoimmune response is.

And point to the obvious.. what about DH? There are otherwise-asymptomatic celiacs with DH, and many people with DH cannot touch gluten. If gluten cannot effect your autoimmune system topically, how could that be true?

People often use this as an example to "prove" that you can get "glutened" through topical application of gluten. I say the same applies to celiacs with DH as to all other celiacs, and as to the general population. If you react to gluten topically, it's an alllergic reaction, not an autoimmune response.

Tallforagirl Rookie
It is astonishing to me how deep the feelings run on this issue. Why do you care what toiletries another person uses?

I don't care what toiletries another person uses, I do care when someone peddles misinformation about celiac disease. I think it fuels paranoia and unnecessary worry. We celiacs have enough to worry about already, without worrying that we may get "glutened" from touching a door handle (which someone may have previously touched after handling a bread roll), or using the wrong brand of shampoo. If someone has an adverse reaction to a topically applied product, then obviously they should not continue using it, but they shouldn't have to worry that they have also provoked an autoimmune reaction because they're celiac.

We have all been through quite enough pain without picking at each other and when that happens it here it makes me really sad.

I feel very badly for those who are highly symptomatic to gluten ingestion. It cannot be very easy at all. If you have a reaction to topical gluten, then by all means you need to avoid that product. But to worry yourself silly that you've been or are going to get "glutened" (and by that I mean you have set off an autoimmune response) by simply touching something that's touched gluten or contains gluten, is not going to help.

raisin Enthusiast

3 things.

1. I already explained what I meant in that phrase you defensively took out of context, though you conveniently didn't quote that part. I've repeatedly stated that I never said sensitivity levels relate to autoimmune reaction levels.

2. I have been glutened by touching a surface that another person had touched after handling a wheat product when I wiped my hands in staid of washing them and proceeded to eat a fruit. Many people have been glutened by shampoo, including myself. Moreover, being cautious does not hurt anyone, but being nonchalant can. There is no scientific proof your opinion is not the misinformation, yet you conveniently ignore that fact and push your opinion while scolding us for stating ours. Is that really productive or logical?

3. DH is a specific type of bump/mark, defined through biopsy, that is known to appear either via consumption, or contact. It doesn't magically convert to being labeled an allergy when attained through contact if it is genuinely DH.

When a person says "I experience this first hand" why jump in and say "No you don't." Especially if you're claiming to want to avoid adding more stress to celiac's lives, why call a chunk of them liars?

Tallforagirl Rookie
3 things.

1. I already explained what I meant in that phrase you defensively took out of context, though you conveniently didn't quote that part. I've repeatedly stated that I never said sensitivity levels relate to autoimmune reaction levels.

Good.

2. I have been glutened by touching a surface that another person had touched after handling a wheat product when I wiped my hands in staid of washing them and proceeded to eat a fruit.

I sympathise with you. But as you said yourself, people who get this sort of reaction don't also need to worry that they've been badly "glutened" because symptom level does not equal autoimmmune response. You may have a very bad symptomatic response, but very little or no autoimmune response.

...being cautious does not hurt anyone, but being nonchalant can. There is no scientific proof your opinion is not the misinformation, yet you conveniently ignore that fact and push your opinion while scolding us for stating ours. Is that really productive or logical?

There's a difference, though, between "cautious" and paranoid. As far as anyone knows, all celiacs are on the same level playing field, as far as gluten ingestion and autoimmune response goes, regardless of symptoms. That means that either we all have to concern ourselves with the ingestion of gluten via skin contact, or we all don't. Going by current expert opinion, we don't.

3. DH is a specific type of bump/mark, defined through biopsy, that is known to appear either via consumption, or contact. It doesn't magically convert to being labeled an allergy when attained through contact if it is genuinely DH.

DH is a symptom of celiac disease, the same as any other symptom of celiac disease. You ingest something with gluten, your DH gets worse. Some celiacs get DH, some don't, some get nausea, some don't.

A topical substance (e.g. gluten) can make DH worse. That does not mean that it is being absorbed through the skin into the gut to provoke an autoimmune response.

When a person says "I experience this first hand" why jump in and say "No you don't." Especially if you're claiming to want to avoid adding more stress to celiac's lives, why call a chunk of them liars?

I don't say "no you don't", I only dispute the whys and wherefores of it. I dispute that the extreme symptomatic response you experience directly equates to an extreme (or possibly even a small) autoimmune response. As I said, if you react to something topical, then don't use it any more. But don't worry yourself crazy thinking you've been "glutened".

Lisa16 Collaborator

The anger in this thread is palpable. I am very sorry about that.

I have heard it said that at the root of all anger lies fear.

But we are not alone. Look how many of us are here. And we are all afraid. We have celiac disease. We have all lost a measure of control over our lives. We are all grasping for security and absolute answers. It is terrifying to hit the limits of the known.

In this world all we really have is each other. Our best resource is our collective experience. It can give us strength and power. But passing judgement one way or another can divide and isolate us. That judgement is not ours to make.

I am happy to find other people who have shared my experience and I can learn a lot from them. I am grateful for this board.

Perhaps, if a certain kind of thread upsets us, we can simply skip reading them.

ravenwoodglass Mentor
I dispute that the extreme symptomatic response you experience directly equates to an extreme (or possibly even a small) autoimmune response. As I said, if you react to something topical, then don't use it any more. But don't worry yourself crazy thinking you've been "glutened".

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.

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      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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