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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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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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okay, I recently posted a thread that I've been sick for a couple of weeks and can't figure out why. I just happened to think of my shampoo when I was showering and sure enough both had hydrolyzed wheat protein in them. They are fairly new bottles but I can't remember when I switched from Panteen to them? I have always been part of the camp that has believed that as long as you don't swallow it then its okay. So now I am back to Pantene to see if it will help because I'm willing to try anything to be back to my old self again. I have been itchy at the base of my neck but no breakouts.

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Interesting. I was just going to post a question about if products with gluten are only harmful if swallowed. Good to know...sorry you are having a problem though.

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okay, I recently posted a thread that I've been sick for a couple of weeks and can't figure out why. I just happened to think of my shampoo when I was showering and sure enough both had hydrolyzed wheat protein in them. They are fairly new bottles but I can't remember when I switched from Panteen to them? I have always been part of the camp that has believed that as long as you don't swallow it then its okay. So now I am back to Pantene to see if it will help because I'm willing to try anything to be back to my old self again. I have been itchy at the base of my neck but no breakouts.

Wheat is only harmful if swallowed and that's medical fact. So, you are either ingesting shampoo while you shower and you are sensitive/allergic to another ingredient in the product. If this is a topical reaction, you may have a wheat allergy on top of Celiac or an allergy to another ingredient. Celiacs have a tendency to have other allergy's/intolerance's also, as evidenced by many on this board. It can become very tricky to figure it all out. It may not be a wheat problem at all.

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Wheat is only harmful if swallowed and that's medical fact. So, you are either ingesting shampoo while you shower and you are sensitive/allergic to another ingredient in the product. If this is a topical reaction, you may have a wheat allergy on top of Celiac or an allergy to another ingredient. Celiacs have a tendency to have other allergy's/intolerance's also, as evidenced by many on this board. It can become very tricky to figure it all out. It may not be a wheat problem at all.

Yes, this is what I always believed to be true, just getting desperate I guess. I am feeling better today, so maybe whatever it is may be finally working its way out of my system.

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Many of us avoid gluten ingredients in shampoos, lotions, makeup etc. Anything you put on your body has the capacity to get into your mouth or contact mucous membranes. While gluten is not absorbed through intact skin it can also enter the bloodsteam through broken skin. Some of us do have an allergy as well as an intolerance which would lead to itching and rashes that are different from DH. You are wise in my opinion to avoid gluten in your topicals since you are still having issues. Some of us can use them with no problem but there are lots of us here who do avoid gluten in topicals.

There are companies that will label well for gluten ingredients and you can find cosmetics and shampoos etc that are labeled gluten free. Dove, Suave and Garneir are good companies for labeling. For organics Giovanni was one of my favs until I developed a soy allergy, Shikai has a couple products, Burts Bees has good labeling policies and I recently came across a company called Himalaya Organique that has a wonderful conditioner that is labeled gluten free and I will be trying their shampoo as soon as I run out of Shikai. Always read the ingredients as some companies have some products that are safe and some that are not.

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You have long hair and I 100% guarantee that shampoo and conditioner are getting into your mouth. You would have to hold your head back and then rinse like crazy to get all the gluten out of your hair. Then wash all the gluten off your hands before you eat or touch your mouth. Shampoo runs down your face and it gets onto your lips.

I do not use any beauty products with gluten because I know at some point it will be on my hands and end up in my mouth when I grab food, or touch my straw or rub my face or whatever.

Matrix and Enjoy have some great products that don't have gluten. They don't label gluten free because of liability issues and morons who would sue over stupid stuff like that, but you can look at the ingredients.

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I can't use any shampoo or condition with wheat in it, because my scalp gets red and inflamed and itchy and my hair falls out. Never experienced any intestinal problems from shampoo though (that I know of).

I would switch to a wheat-free shampoo and conditioner to be safe. I make my own using pure glycerine and olive oil for condition. There are quite a few brands online that also sell wheat-free cosmetic products. Good luck!

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Wheat is only harmful if swallowed and that's medical fact. So, you are either ingesting shampoo while you shower and you are sensitive/allergic to another ingredient in the product. If this is a topical reaction, you may have a wheat allergy on top of Celiac or an allergy to another ingredient. Celiacs have a tendency to have other allergy's/intolerance's also, as evidenced by many on this board. It can become very tricky to figure it all out. It may not be a wheat problem at all.

____________

I continue to be mystified by this fantasy that one can put wheat filled hair conditioner on one's hair, which is designed to leave a persistent oil based residue, even when rinsed, use a towel on the hair to blot dry it, then rub the towel all over the body and not be coating one's self with gluten. Then touch any food products afterwards, and spread it further, every time you use that towel. The same with moisturizer lotion, which I can prove has gotten me from second hand cross contamination, when my spouse used it, and then bare handed food and ice cubes while preparing a meal.

Fortunately I have a pretty good sense of smell. If I can smell it on you, you're contaminated with it. I don't see very many people who don't touch their hair constantly without realizing it, even when doing things in the kitchen. Or at the keyboard. The steering wheel. Door handles. Say my spouse blobs suntan lotion on himself and then drives my car. It had better be safe lotion, because it's now on the steering wheel.

Cosmetics are also putting a lot of oats (sativa) in their stuff, and of course the oats are cross contaminated, also.

You are, of course, free to use whatever sort of goo you wish on yourself. Good luck pretending none of it ever ends up in your mouth.

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Are there any mainstream shampoos and cosmetics that are gluten free? I know about Sauve but that's about it. I use Elizabeth Arden cosmetics and love them but no idea if they have gluten.

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You have long hair and I 100% guarantee that shampoo and conditioner are getting into your mouth. You would have to hold your head back and then rinse like crazy to get all the gluten out of your hair. Then wash all the gluten off your hands before you eat or touch your mouth. Shampoo runs down your face and it gets onto your lips.

Lol...need to update my avatar, I got a little crazy last month and chopped it all of to just below my ears! You are right though I paid attention when I last showered and its hard to keep it out of my face and yes it pooled around my lips. If I need to stay away from tiny crumbs then it makes sense to use wheat free toiletries that could accidentally end up in my mouth.

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____________

I continue to be mystified by people who reject how Celiac Disease actually works and continue their fantasy that everyone who comes into contact with gluten topically thinks they are being slowly killed by gluten. If you learn how the disease actually works and how not to CC yourself, you should not have a problem.

I am lucky in that I am extremely serio-positive so can actually see if I am ingesting gluten on a regular basis. My latest blood work came back with the lowest antibody levels my doctor had yet seen in a patient. So I know that I am doing things the right way because I took the time to learn. I have also learned that if you use good quality shampoo (that can mean expensive) it almost never contains anything with wheat/gluten because they are considered cheap fillers.

The only topical products that anyone needs to be wary of are lipstick and hand lotion. Body lotion can be washed off the hands after applying and unless you are licking your skin on a regular basis like a cat, it shouldn't be a problem.

I find it pretty gross that someone would lather up with suntan lotion and then not wash their hands.....even if they did not have celiac disease. Leaving a slimy residue on my steering wheel or door knobs for that matter would not happen a second time but it has little to do with gluten. The thought of touching a door knob and then putting my hands in my mouth just would not happen but I'm more concerned with dirty hands and bacteria than anything else. I think if you read most reputable articles on Celiac Disease, unless you put that doorknob directly in your mouth after someone has touched it after ingesting a sandwich, you won't become glutened. I think Dr. Green even touched on this issue by saying people should not be making this diet any more difficult than it already is for some and not to

become paranoid about it. I think some of people's thoughts on how they may become sick are unfounded and create a lot of fear where there doesn't need to be any. Education is paramount to success with living gluten free.

I don't eat my make-up so it's a non-issue. You are also free to make your life as difficult as possible but you shouldn't criticize those who have it figured out and are doing exceptionally well on the diet. Anyone can learn to live gluten-free successfully without living in fear of shampoo and conditioner. If I were eating my products over the last 5 years, I wouldn't have the bloodwork I do and I wouldn't be as well as I am.

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I know I am new to this but I think people sometimes react stronger than others to gluten so it is an individual thing. I know though because I don't like having to wash my hands everytime I put something on my face that I am going to change companies for makeup. A company called Beauty Control that sells on line has makeup and cleansers labeled gluten free. I haven't looked for shampoo yet with this company.

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The National Institute of health has this on their info page about celiac disease. The statement that I have bolded is what I consider most pertinent to this discussion. People are free to choose to be as strict as they like and should not be put down for it. Some of us are more sensitive than others and clearly react to gluten in topicals. They should not be ridiculed for it.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac_ez/index.htm

Points to Remember

People with celiac disease cant eat foods or use items with gluten in them.

Celiac disease harms the small intestine.

People with untreated celiac disease can't get needed nutrients.

Without treatment, people with celiac disease can develop other health problems.

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I find it pretty gross that someone would lather up with suntan lotion and then not wash their hands.....even if they did not have celiac disease. Leaving a slimy residue on my steering wheel or door knobs for that matter would not happen a second time but it has little to do with gluten. The thought of touching a door knob and then putting my hands in my mouth just would not happen but I'm more concerned with dirty hands and bacteria than anything else. I think if you read most reputable articles on Celiac Disease, unless you put that doorknob directly in your mouth after someone has touched it after ingesting a sandwich, you won't become glutened. I think Dr. Green even touched on this issue by saying people should not be making this diet any more difficult than it already is for some and not to

become paranoid about it. I think some of people's thoughts on how they may become sick are unfounded and create a lot of fear where there doesn't need to be any. Education is paramount to success with living gluten free.

I don't eat my make-up so it's a non-issue. You are also free to make your life as difficult as possible but you shouldn't criticize those who have it figured out and are doing exceptionally well on the diet. Anyone can learn to live gluten-free successfully without living in fear of shampoo and conditioner. If I were eating my products over the last 5 years, I wouldn't have the bloodwork I do and I wouldn't be as well as I am.

________________________

It's a good idea not to give people bad advice that will result in their getting cross contaminated.

Repeat: Oil residue is extremely hard to remove from most surfaces without a thorough washing. Hair conditioner does NOT wash out. Suntan lotions are designed to stay on with water exposure, and sweating, for several hours. Apply suntan lotion, wash your hands, and then lick them, if you dare, and tell us you can't taste it. If you use a gluten filled product, you're literally wearing wheat. And your scalp and skin dander gets everywhere, because humans SHED this constantly. Besides shedding their hair. Yes, you are smearing this stuff on your pillowcases and breathing it in, too. Do your lips ever touch the pillowcase when you sleep ?

Amusing that in the "Restaurants and Dining" section there are many, many descriptions of people who got cross contaminated at otherwise supposedly "safe" chain restaurants when ordering what was supposed to be "gluten free" foods. They observed that the food preparers, in spite of wearing plastic gloves, were constantly touching gluten filled breads or tortilla wraps, and then the supposedly gluten free foods, and using the same spoon on both, or using the same gloved hand to grab handfulls of lettuce, cheese, and then touching regular buns, etc.

Nobody questions that they have gotten legitimately sick, just from having a spoon or tongs used from one pot of gluten free food to having had it wiped across a slice of bread. Or having a plastic glove touch both bread and lettuce. It doesn't take VISIBLE amounts of gluten streaks to cross contaminate anyone. Yet should they be thought of as making it up ? People never touch their hair ? Ridiculous.

I'm assuming you're never done restaurant cooking, nor worked in any sort of health care facility or had any sort of serious hand washing training. Once you have, you easily see the different ways restaurant attendants and food prep cooks can mess this up. You see it when you order a gluten free meal in a restaurant with a gluten free menu with a waitperson you thought was pretty understanding, and then they come back to the table with your salad,....... and a plate of bread. Which they attempt to plunk down in front of you. Before they get The Look :ph34r: The bread has a little bowl of butter with it. Where has the knife, that is now stuck in the bread you told them you couldn't eat and didn't want, been ? What scooped the butter ?

Avoiding daily applications of gluten containing topical products is really quite simple: don't buy and use them. Use one of the many fine products that don't have gluten in them. Then you don't have to worry about whether they're "getting" you. Especially if you have a good thick head of hair now after it grows back in.

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This topic has been debated many times here, and I'm sure it will be again. People's reactions and sensitivity levels differ, so it seems that there really isn't a definitive one size fits all answer that works for everyone.

I hope we can discuss and at the same time respect that some of us are more sensitive to topicals than others.

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Having just read through this, and discovering after initial cynicism, that I am ridiculously reactive to gluten, using topicals is DEFINITELY an issue that is relative to a person's sensitivity. Thank you, Patti.

My experience is not yours nor yours mine. Perhaps by sharing we find similarities between various and unique answers that aid us and hence this board works its magic. Just as I think all those with cancer do not experience the disease in the same manner, nor do those diagnosed with celiac or those with gluten intolerance. "Tolerance" is good to contemplate.

lisa

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I get frustrated when we can't except the fact that we all react different. For years I had to change deodorant, laundry soap, shampoo, fabric softener. I would get itchy and break out in hives. Baking soda baths were my best friend for my teenage years. My journey began in January and continues.

I wish we could all just read and be thankful for the support as some of us don't get the support from our doctors. I am fortunate to have the support of my family and co workers.

I am thankful for this site and the comfort that I get from knowing that I am not the only one.

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Thank you Patti and Lisa, I didn't mean for this thread to get so heated.

You asked an honest question and there is nothing wrong with doing so. It is not your fault that the debate got a bit heated. In the end we all need to do what is best for us as an individual. The topical issue seems it will always have those who are for avoidance and those for whom it isn't an issue. You have nothing to feel bad about.

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Thank you Patti and Lisa, I didn't mean for this thread to get so heated.

No worries, Kathy :) It helps so much to share our experiences--you never know what will strike a chord with someone.

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I'm not sure I have ever had DH but suspect I have and it was misdiagnosed as shingles. I'm also prone to random hives, psoriasis, kp (chicken skin) and general redness. When I went gluten free I changed all my hair and body products and cosmetics. I now rarely have hives or psoriasis and my kp is slowly going away. So for me I know there was a connection. I figured it was a simple change and would eliminate any worries of getting glutened/CC'd. It didn't make my life anymore difficult. If anything it made it easier by eliminating potential suspects.

Are there any mainstream shampoos and cosmetics that are gluten free? I know about Sauve but that's about it.

Suave, Dove, Pantene, Cover Girl, Burt's Bees, Avon, Tressemme, Desert Organics, California Baby are all good places to start. Just heck labels as all products may not be gluten-free and call the 800 # if you're unsure. I use or have used all of the above products and are happy with them.

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At first I thought changing hair products was overkill, but then I realized that I touch my hair ALL THE TIME and I often eat finger foods and touch my lips with my fingers.

As others have mentioned, anything you wear can end up in your mouth, and I think a lot depends on your personal habits.

My eye make-up, for example, I'm not too worried about... I don't touch my eyes often, if at all-- if I do, it's with the back of my hand, not my fingertips. Lipstick, however, is definitely a big issue for anyone with celiac OR gluten allergy/sensitivity.

If you do use beauty products that contain wheat, then I'd assume taking extra precautions in food handling and preparation might help to keep from contaminating yourself. Not eating with your bare hands, using gluten-free hand sanitizer before cooking, etc.

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________________________

It's a good idea not to give people bad advice that will result in their getting cross contaminated.

Repeat: Oil residue is extremely hard to remove from most surfaces without a thorough washing. Hair conditioner does NOT wash out. Suntan lotions are designed to stay on with water exposure, and sweating, for several hours. Apply suntan lotion, wash your hands, and then lick them, if you dare, and tell us you can't taste it. If you use a gluten filled product, you're literally wearing wheat. And your scalp and skin dander gets everywhere, because humans SHED this constantly. Besides shedding their hair. Yes, you are smearing this stuff on your pillowcases and breathing it in, too. Do your lips ever touch the pillowcase when you sleep ?

Amusing that in the "Restaurants and Dining" section there are many, many descriptions of people who got cross contaminated at otherwise supposedly "safe" chain restaurants when ordering what was supposed to be "gluten free" foods. They observed that the food preparers, in spite of wearing plastic gloves, were constantly touching gluten filled breads or tortilla wraps, and then the supposedly gluten free foods, and using the same spoon on both, or using the same gloved hand to grab handfulls of lettuce, cheese, and then touching regular buns, etc.

Nobody questions that they have gotten legitimately sick, just from having a spoon or tongs used from one pot of gluten free food to having had it wiped across a slice of bread. Or having a plastic glove touch both bread and lettuce. It doesn't take VISIBLE amounts of gluten streaks to cross contaminate anyone. Yet should they be thought of as making it up ? People never touch their hair ? Ridiculous.

I'm assuming you're never done restaurant cooking, nor worked in any sort of health care facility or had any sort of serious hand washing training. Once you have, you easily see the different ways restaurant attendants and food prep cooks can mess this up. You see it when you order a gluten free meal in a restaurant with a gluten free menu with a waitperson you thought was pretty understanding, and then they come back to the table with your salad,....... and a plate of bread. Which they attempt to plunk down in front of you. Before they get The Look :ph34r: The bread has a little bowl of butter with it. Where has the knife, that is now stuck in the bread you told them you couldn't eat and didn't want, been ? What scooped the butter ?

Avoiding daily applications of gluten containing topical products is really quite simple: don't buy and use them. Use one of the many fine products that don't have gluten in them. Then you don't have to worry about whether they're "getting" you. Especially if you have a good thick head of hair now after it grows back in.

My advice is in no way bad advice and every publication I have ever read pertaining to this subject states emphatically that, unless you are eating your products, you do not have to worry about exposure from topical products. These would be medical literature books on celiac disease so I guess the whole medical community are dopes and have it wrong? I don't think so. If your scenario's on CC, which are a stretch to begin with, are such a huge problem for Celiacs, the Celiac Foundation and all publications would be warning people not to use any gluten containing, topical products....but they don't. It's called common sense and I think that's what is missing here.

Do I touch my hair during the day? On occasion but for the most part, I do not primp the day away. I can pretty much guarantee that I do not make a habit of ever putting my hands in or around my mouth without washing them first because that's just plain gross. It's a dirty world out there and you need to learn to wash your hands a lot. I figure that's the reason I never get colds or have ever had the flu either.....common sense. I have suggested before that everyone diagnosed with Celiac should read Dr. Peter Green's book because he covers this subject well and it's a must read for all newly diagnosed or those who may not understand CC well.

The restaurant dilemma has not been a problem for me. I eat at high end places only where the chef will have had formal training on food so knows what gluten and CC mean. I have taken the time to develop a relationship with the places I eat out at so they know what they have to do for a Celiac not to become sick. I also do not dine out all that often...no where near as often as some on this forum have stated. You just cannot eat out as much as the general public does without risking getting sick. The chain restaurant food I do not care for so avoid them. Will sustaining a gluten hit happen on occasion? If you eat out, it certainly may but the vast majority of us get through it and pick up and move on. I have been lucky in that I live in an extremely aware part of the country so it's easier for me to go out and eat safely, when I choose to do so.

I have had nurses training but chose not to go into that field so I am highly versed in CC....it's one of the first things they teach you in nursing school. Hope that answers your question on my supposed lack of understanding of CC. I also was near death at time of diagnosis...really. One more week, the doc said, and I would be having a feeding tube installed. I am about as sensitive as a person gets so this may explain why I took the time to really learn about Celiac and how the disease works. I am in no way criticizing anyone who makes the choice to go completely gluten-free with everything but am critical of incorrect information being given out on a Celiac forum. It really is a choice issue depending on how careful you are or whether you are dealing with small children on a daily basis. For adults with a working brain and careful habits which are easy to learn and incorporate into daily life, you can use some products containing gluten and have absolutely no problems, as long as you do not ingest them in enough quantity. The quantity is small but there is an established quantity for a reaction. Referencing back to your first paragraph of potential CC risks, none of them are backed up by any medical literature as they are just too far of a stretch. Washing your hands will remove gluten and this is also contained in the book but hey, what does the leading researcher and physician know? The bottom line is that you have to ingest a certain amount of gluten for a reaction to occur and it was somewhere around a 1/4 of a teaspoon. I think I would know if I were ingesting that much suntan lotion. One of my favorite lines from his book is this:

Understand that it is very difficult, if not impossible, to avoid all gluten at all times. Be diligent, but realistic. Excellent advice.

I don't know what other way a person would have of being able to measure their gluten exposure or possible ingestion other than blood work, for those who are lucky enough to be serio-positive like myself.....extremely serio-positive. I was one step away from a zero reading. That may not happen every time but I have been consistently in that area for the past 5 years. That doesn't come from being careless. If you feel you cannot use a topical product without CC'ing yourself, then by all means go entirely gluten-free but do not criticize those who have been able to accomplish this successfully. It's the most up to date, medical information out there and people should hear the correct information so they can make an informed decision.

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I find it pretty gross that someone would lather up with suntan lotion and then not wash their hands.....even if they did not have celiac disease. Leaving a slimy residue on my steering wheel or door knobs for that matter would not happen a second time but it has little to do with gluten. The thought of touching a door knob and then putting my hands in my mouth just would not happen but I'm more concerned with dirty hands and bacteria than anything else. I think if you read most reputable articles on Celiac Disease, unless you put that doorknob directly in your mouth after someone has touched it after ingesting a sandwich, you won't become glutened. I think Dr. Green even touched on this issue by saying people should not be making this diet any more difficult than it already is for some and not to

become paranoid about it. I think some of people's thoughts on how they may become sick are unfounded and create a lot of fear where there doesn't need to be any. Education is paramount to success with living gluten free.

I don't eat my make-up so it's a non-issue. You are also free to make your life as difficult as possible but you shouldn't criticize those who have it figured out and are doing exceptionally well on the diet. Anyone can learn to live gluten-free successfully without living in fear of shampoo and conditioner. If I were eating my products over the last 5 years, I wouldn't have the bloodwork I do and I wouldn't be as well as I am.

Gemini that is absolutely NOT true that good quality shampoos do not contain wheat. I am a total products snob and I have literally like 10 bottles of products in my shower. Nearly EVERY high quality salon product contains wheat because if you're not celiac it's good for your hair. Redken, Aveda, ABBA, Paul Mitchell, Purology the most expensive high quality producct around, the list goes on- ALL of them contain wheat in some form. I spent TWO HOURS reading shampoo and conditioner labels and taking notes at a beauty supply. My hairdresser of 15 years and I spent a ton of time while my color was processing looking at everything. Wheat wheat wheat is in it all.

The only salon quality hair products that have a large choice of shampoo and conditioners that don't contain wheat are Enjoy and Biolage by Matrix. There is only ONE Redken line that has no wheat. I literally cried over Redken Blonde Glam because I love it so much. Redkens' new anti aging line has no wheat or gluten.

I don't see how you can say people don't get how this works if they avoid wheat and gluten containing beauty products. It gets in your mouth. Period. You cannot shower without it running down your face and getting to your lips. It's not paranoia. It's a fact. Try putting food coloring in your shampoo and see where it ends up. Conditioner is meant to stay on the hair and not all rinse out. It stays on the skin. Lotions get on your food and all over your house.

It's just a fact.

Believe me I was SO resistant to this idea. I am a ridiculous product queen. I had to throw out about $200 worth of product and/or give it away. My bathroom looks like a mini Ulta. I know my beauty products! LOL

Bare Minerals and Benefit are good make up choices. H2O Plus is great! I have great skin and I've been using it for 10 years. I haven't found anything with wheat or other gluten ingredients in H2O Plus yet. I swear by it. I'm 40 and I owe my skin to those products.

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    • Yes I eliminated high glycemic foods. Eating only small amounts of carbs. No fruits, added sugars, starchy grains. Eating lots of fibrous veggies. Eating olive oil, as I don’t seem to tolerate the saturated fats or MCT oil. Allergic to nuts and seeds unfortunately.
    • Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
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