Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Shampoo And Conditioner


ksymonds84

Recommended Posts

ksymonds84 Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



srall Contributor

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.

Gemini Experienced

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.

ksymonds84 Enthusiast

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.

ravenwoodglass Mentor

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.

sandsurfgirl Collaborator

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.

naiiad Apprentice

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

My hair gets into my mouth when I'm sleeping too, or when it's wet it whips across my face.

Takala Enthusiast

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.

mommyto3 Contributor

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.

ksymonds84 Enthusiast

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.

Gemini Experienced

____________

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.

bincongo Contributor

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.

ravenwoodglass Mentor

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.

Open Original Shared Link

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.

Takala Enthusiast

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.

jerseyangel Proficient

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.

oceangirl Collaborator

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

ksymonds84 Enthusiast

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

sandiz Apprentice

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.

ravenwoodglass Mentor

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.

jerseyangel Proficient

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.

kayo Explorer

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.

Fey Rookie

At first I thought changing hair products was overkill, but then I realized that I touch my hair Open Original Shared Link 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.

Gemini Experienced

________________________

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.

sandsurfgirl Collaborator

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,252
    • Most Online (within 30 mins)
      7,748

    MI-Hoosier
    Newest Member
    MI-Hoosier
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Sunshine4
      Many apologies for somehow changing your first name Scott! 
    • Sunshine4
      Mark, do you have suggestions as to celiac centers that could be helpful? Oklahoma/Texas neurologists have only offered me the “eat gluten free” advice and then when I ask about the hands or muscle twitching they said they just don’t know. I appreciate your great information on supplements, thank you for your help!  Scott, do you have suggestions as to celiac centers that could be helpful? Oklahoma/Texas neurologists have only offered me the “eat gluten free” advice and then when I ask about the hands or muscle twitching they said they just don’t know. I appreciate your great information on supplements, thank you for your help! 
    • Scott Adams
      It sounds like you’ve been through a challenging journey since your celiac diagnosis, especially with the unexpected neurologic symptoms like muscle twitching and hand tremors. While celiac disease is primarily known for gastrointestinal issues, it’s important to recognize that it can also manifest in non-GI ways, including neurological symptoms. Research has shown that celiac disease can sometimes be linked to conditions like gluten ataxia, peripheral neuropathy, or even myoclonus (involuntary muscle twitching), which might explain what you’re experiencing. The fact that your symptoms have fluctuated with dietary changes suggests a possible connection, even if it’s not yet fully understood by your local neurologists. It might be worth seeking out a specialist who has experience with celiac-related neurological issues or consulting with a celiac-focused research center. In the meantime, staying strict with your gluten-free diet is a good step, as even small amounts of gluten can trigger immune responses that may contribute to these symptoms. You’re not alone in this—many with celiac report similar struggles, and connecting with online communities or support groups could provide additional insights and reassurance. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Sunshine4
      I was initially diagnosed with celiac in June 2024. I had no G.I. issues but got chest and pelvic pain. I changed my diet – although I was not great at watching cross-contamination – and had no problems until the end of October 2024 when I started getting headaches. At the end of December 2024 the headaches ended but I started having twitching throughout my body. Not long-term twitching just a fast burst twitch. In addition, I had tremors start in both of my hands. Sometimes it is stronger in one hand than the other and sometimes it seems to die off and then comes back. This has gone on for two months and the twitching has gradually lessened although sometimes it comes back with a vengeance. I have been really strict about  my diet and cross contamination so I feel these symptoms are related to my celiac disease although I’m not certain and I’m unsure that the strict diet is what has helped. I’ve been tested for everything -  MS, lupus, ALS and a variety of other things which were all negative. I can only relate these symptoms to my celiac but no neurologist in my area seems to know anything about celiac causing anything other than gastric issues. I’m so frustrated and just looking for others that have had similar symptoms and doctors that are more knowledgeable about celiac and neuro issues. Thank you! 
    • LookingForAnswers101
      I can't tell yet because it's only been a few days and the issue occurs every 2/3 months!
×
×
  • Create New...