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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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MeghanEileenReilly

Severe Itching And No Rash

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Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! :lol:

Meghan Reilly

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Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! :lol:

Meghan Reilly

Hi, Meghan, and welcome.

Don't be discouraged quite yet, five days is a very short time. Give it another week or two and if it still persists I would start suspecting another food culprit. For me, it was potatoes. Soy also gave me the itchies, but I had a rash with that. But no rash with potatoes. Everyone reacts differently to different things, though, so for you it could be something else, although most likely one of the major allergens.

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I used to scratch until I bled- seriously, I had bruises shaped like scratches. It was so bad, especially on my thighs and torso. It's mostly gone away since going gluten free, but it took a couple of months. My doc says its normal with Celiac. He suggested coating myself with Eucerin Calming Cream while still wet after showering, then drying off. It really has helped.

Before going gluten free I had every allergy test known to man, and I was not allergic to anything <_<

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I know what you mean. I have dry skin but this is a different, almost burning or stinging kind of itch. I saw something that said that some women in menopause get this. I know you are too young but your hormones could be out of whack. I thought that might be why I was having them. I was found to be extremely anemic. After I had been taking massive doses of iron for 4-5 weeks, the itching has gone away. Something to get checked if you haven't.

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I know what you mean. I have dry skin but this is a different, almost burning or stinging kind of itch. I saw something that said that some women in menopause get this. I know you are too young but your hormones could be out of whack. I thought that might be why I was having them. I was found to be extremely anemic. After I had been taking massive doses of iron for 4-5 weeks, the itching has gone away. Something to get checked if you haven't.

Hi Kareng,

I had my hormones checked because after a lot of research, I found that hormonal imbalances can cause itching - my cortisol was low so I am going on cortisol in the next few days when it arrives from the doctor.

Also, I think I was anemic as a child and wondering what kind of iron you are taking and what dosage & where to get it?? Please let me know, I'd like to try everything!

Hope you have a nice day :P

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Soy in all it's forms is in almost all processed foods........And if you are consuming soy lecithin, or msg, soybean oil, etc.... THAT can Definately cause severe ITCHING! It always did for me........every time........to where now, I cannot consume any form of soy or any legume without having the severe itch with no rash! No Doctor every found it either....I discovered it myself after keeping a food journal and finding the common denominator; culprit! Good luck. I wish there were more foods that kept the soy out! Gluten free is easy compared to finding foods 'sans' the soy! Soy is dangerous anyway...it was way over touted and people are just now realizing this. Some celiacs can tolerate soy....but I am severely allergic to any and all forms of it. Hope this helps.

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Like someone suggested, I would say give it more time gluten free to see if it gets better. I know that's a hard thing to hear. I know how frustrating non-stop itching can be, I went through that for quite some time. I tend to react to things I'm allergic to by itching. It took a while to weed out all the things that were causing it as there were multiple allergies in my case.

I'm not a big fan of allergy testing, but have you tried that? Allergy testing can be hit and miss with many people, providing both false positives and false negatives. Much as some doctors would like you to believe, allergy testing doesn't always work.

Also consider that if you are itching all the time then you could well be allergic to a substance that is either in something you eat everyday, or is an ingredient in many things. I am allergic to anything sunflower, so when I gave up potato and corn chips which all invariably use some amount of sunflower oil a lot of the itching stopped. When I gave up soy which is in a WIDE VARIETY of pre-packaged foods the occasional itching stopped. So it could be one specific food that you love and eat every day. Or it could be an ingredient like soy or corn or safflower or canola or lactose or peanuts that shows up in a lot of pre-packaged foods.

You might consider taking you diet to the basics for a few days and eating nothing but a simple whole food diet; say plain chicken and rice, to see if that helps. If it does you can then start adding things one at a time back to your diet until you add something back that makes you itch. That's basically an elimination diet. But you've got to try something because I know how the itching can make you crazy. If doctors won't or can't help then you've got to help yourself and diet modification is the first logical step.

Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! :lol:

Meghan Reilly

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It took me 5 months on gluten free diet before the itching got any better, so don't give up. I used to scratch my legs and scalp until there was literally no skin left. But at least I could scratch it. The itching in my feet, palms and worst of all inside my nose/ears/mouth, where no scratching was possible/effective was driving me nuts.

As someone else suggested, you might also try the elimination diet. I'm now getting the terrible itchy feet again, and suspecting soy oil as the culprit.

And maybe look for other possible causes beside your pantry. I wasn't able to use any laundry soap except the real 'no-residue' ones you can buy in sport/outdoors stores (Nikwax or what's the name). Now it seems a bit better, but still have to be very cautious with all these household chemicals, including things like scented toilet paper.

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I know this one condition, I believed this is caused by formication. it is form of paresthesia, you might have gotten it from your previous disease/sickness. I'm pretty sure it's not permanent, i hope.

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Meghan

My horrible itching had no rash or even redness until I started scratching. Then it changed and I started getting tiny blisters in some places, but only as the itch was well under way. And even then only in a few places at first, especially hands. It is Dermatitis Herpetiformis. I noticed improvement after 2 weeks gluten free.

Please try a bit longer. If it's from Celiac you will be so glad you did. Also, as is the case with many DH celiacs, I had much less intestinal trouble tan others did. (I have none now!)

Whatever it is, I wish you recovery. You are not a head case. :-)

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I get itching (no rash) from soy and dairy. If you give gluten free a good try and have no luck, it's definitely worth doing an elimination diet to see if there's something else.

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Meghan,

Word for word, your story and mine are the same. I have called the rash free yet severe , head to toe itching that I've been suffering with "the itchies". They wake me up at night, and keep me up. They are miserable. Ive gone to doctors, and was so mislead up until recently. My sister is also celiac, and she also insisted that Gluten was the cause of my suffering. A few weeks ago, I finally went to her doctor, who advised me to remove all gluten from my diet.

At first, I still would have "the itchies"... But as I learn more and more, I'm discovering that gluten is in WAY more than we realize. Wheat, malt, barley, rye...those are all ingredients used in things that we'd never expect - like the guacamole at Moe's! Salad dressings, tomatoe sauces, corn flake cereal, and the list continues.

So as I eliminated All of those ingredients and became the crazy girl who interviews the chef at every restaurant and now researches EVERY ingredient that I eat/cook with, the itchies have gone away... I'm left rejoicing and so much nicer now that I'm not so sleep deprived.

But then, much to my dismay, I had a few nights of the itchies, despite the fact that id been crazily gluten free, to a T, ....so I believed.

After researching and breaking down everything I'd eaten the previous day, the only thing that I'd consumed that I hadn't confirmed was gluten-free were my vodka drinks.

Being a girl who likes her occasional (or sometimes frequent :-) vodka drink(s), I was also shocked to discover that There are many liquors that are fermented with celiac-UNfriendly grains, such as our arch enemy, wheat.

Now there are two very contrasting schools of thought regarding alcohol and whether or not they are ok for us Celiac-freaks.

celiac groups and doctors alike insist that the distillation process COMPLETELY removes the glutinous protein from liquor, thus being a-okay for us celiacs. The other half of the celiac groups and doctors have the complete polar opposite perspective, declaring that these alcohols fermented with glutinous grains are NOT ok.

My heart sank when I heard that I potentially may have to say good bye to not only my beloved pizzas, croissants , and cakes, but ALSO most liquors and alcohols. But if that was the way to stop my itchies, then by golly I'll do it...

And guess what?

They stopped. Totally.

That is, until I decided that ONE vodka drink would be just fine....(up until recently, I didn't know that vodka didn't only and always use potatoes to ferment...in fact, usually it uses grains). But knowing that the drink I was consuming MAY or may not have at one time been exposed to grains, I thought I'd take the risk and just have the drink.. I go to bed, and 3am hit and then bam, I was jolted awake by the miserable itchies.

the next day I do the research, which confirmed that the type of vodka I drank Was in fact fermented with/in grain.

Over the past week and a half, i have unfortunately subjected myself to my personal study of whether or not g

Alchohols that were fermented in glutinous grains caused my gluten symptoms... And the results have been quite telling.

I am 100% positive that such alcohols should be eliminated from a celiac patient's diet. I'll have a tiny bit of vodka (TINY), and I'll make sure that I do not know if it was distiller with grain or potatoes. Every time I get the itchies, I find out that the vodka I drank was fermented with grains. Every time.

Now I beg of you not to subject yourself to the misery that I hahavoc using yourself as a guinea pig in your own personal gluten study. But I do hope that you maybe take something from my story.

So my point is this: You're probably celiac. I bet if you eliminated absolutely EVERYTHING glutinous, then your itchies will go away. You just need to be psychotically careful and aware. Do your research. Make sure that you're not unintentionally and unknowingly eating gluten. I really wish you so much luck. Best

Brook

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The reason that the experts are fifty/fifty on the grain alcohols is that probably fifty/fifty of celiacs do or do not react to them. You cannot generalize from yourself as to the way others will react. I have just finished a vodka martini to which I have absolutely no reaction, and I do not tolerate potato or wheat, so for me, enough of whatever has been distilled out to suit my body. I am sorry to hear that your body does not react the same as mine. But you really cannot tell other people how they will react - everyone is different and tolerates different levels.

My itchies were soy and potatoes. :)

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I know this is an old post but I too get this sometimes. At one point I thought it was a new shower wash that I had tried. Twice I itched all over from using it. But I had used it one time prior and it was fine. I have since used it and had no problems. So... Maybe it was something my daughter used in the shower prior? I did this to her once. Used oats in the bath. Thought I cleaned the tub out well but, no. In her case there was not only itching but a rash. Sometimes I also think there could be something in the air. Maybe pollen or something.

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Hi there,

I will add another layer: lectins. We have a wonderful little girl who is about to turn 6 who had itching (no rashes) and joint/muscle pain 2-3 times a week. Eventually she was diagnosed Celiac. We took her off gluten and her itching/joint/muscle pain went from 8-12 times a month to about once a month. I mentioned this to my cardiologist this week and he advised us to remove lectins from her diet as well. I have no data yet to report, but thought that might provide another avenue to consider.

Hang in there!!!

Thinking of you!

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I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering.

I, too, suffered steadily-worsening itching without rash for years. I just wrote it off to generic eczema until I finally stumbled across celiac/gluten intolerance as a possible culprit for many of the symptoms I had been suffering. Since going gluten-free earlier this year, the uncontrollable itching has mostly resolved itself - but it took awhile. I didn't really suffer any visible signs of rash other than when I scratched so much that I irritated my skin, although the last few months before I went gluten-free I did develop dermagraphia where I could basically write on my own skin by lightly pressing on it. You can imagine how red and bumpy my skin looked whenever I had an itching fit!

At any rate, just offering my own experience to encourage you to stick with it for now. You can't really judge if it's truly helping you for a couple of weeks at least, from everything I've read. For some people it takes even longer.

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I ended up giving up ALL alcohol in the end, but vodka was the worst for me. I once came out in hives head to toe within 3 minutes of drinking melon vodka.

Wish I had worked it out then instead of 15 years later.

I am now looking forward to being psychotically vigilent.

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\I mentioned this to my cardiologist this week and he advised us to remove lectins from her diet as well. I have no data yet to report, but thought that might provide another avenue to consider.

Put me firmly in the lectin problem camp. They are a bigger problem for me than gluten. And responsible for itches which gluten wasn't.

ETA: You can learn more about lectins here:

http://www.marksdailyapple.com/lectins/#axzz27V82GF5M

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I would wonder if this itching is neurologic? and we know that the neuro issues tend to be the last to clear.

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I have diagnosed DH, the skin's form of celiac. I get the bug under my skin itching sometimes with no rash. There was a while that I got it all the time. I too have hormone imbalance and am being treated for it now. Did you have all of your hormones checked, or just your cortisol? Was it saliva testing, as that is the gold standard? If not I recomend it!

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I have diagnosed DH, the skin's form of celiac. I get the bug under my skin itching sometimes with no rash. There was a while that I got it all the time. I too have hormone imbalance and am being treated for it now. Did you have all of your hormones checked, or just your cortisol? Was it saliva testing, as that is the gold standard? If not I recomend it!

The itching has been so bad for me between the itching with no rash and the DH, that at times I have scratched with a sarrated steak knife, ahhhhhhhhhhhhhhh! :(

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Hey guys,

It has been a while since the last post, but seeing that nobody has come to any conclusion I figured I'd breathe new life into this thread. 

I'm also suffering from this horrible itchiness, and I am on a strict elimination diet (fodmap) because I don't seem to get all the way well after years of poor dietary decisions. 
As some of you mentioned soy can be the culprit for many, and I'm currently using creamed soy as a fat source... I'm guessing that is the case for me. 

I'm still interested in hearing how you guys are. If you have found any solution to this, or if you are still plagued with it. I wake up many times every night and some night I just can't sleep for hours. Feels like there is an anthill in my bed.

 

Hope to hear from you guys!

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Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! laugh.gif

Meghan Reilly

I wouldn't get discouraged yet.  Five days--thats early.  I would give yourself a month or so to see if you have improvement.  Try lotioning BEFORE you get in the shower--your entire body.  Instead of a hot shower, take a warm one and keep it short.  Pat your skin dry instead of rubbing it.  Use shaving oil before applying your foam.  Use foam instead of gel.  Shave a little less often (if possible) Eat frozen blueberries and raspberries in place of your evening dessert/ice cream.  Stick with softer textures for your tops and pants when possible.  You could also have other food intolerances beside gluten.  You could have them in addition to gluten.  

 

Are any of your medications actually causing the itchiness???  We are in your corner.  Keep us posted.

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Just noticed this is an old thread.  Never hurts to re-visit a topic when necessary!

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For me, I had the lucky timing of getting what I believe is formication related to perimenopause (yes, look it up :-) it's like bugs crawling on your skin) at the same time I had intense all-over itchiness from undiagnosed Celiac (with no rash and only intermittent hives).  

 

Once the other perimenopause symptoms went away and I'd been gluten free for a few months, the itching subsided greatly.  Still happens once in a while, but I thought I was going crazy!!!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
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