5 Years Gluten Free- Encouragement For The Newbies

[sandsurfgirl]

Without taking this thread too far off course, I want to say this: You do not need to get gluten free makeup, shampoo and conditioner unless you have a wheat allergy on top of celiac.

 

The only thing you need to scrutinize is lip stick and possibly any facial creams that may end up in your mouth that you will swallow.

I have never seen a toothpaste with gluten in it, BTW

 

Read this please

 

Open Original Shared Link

 

get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler 

 

and welcome to the celiac family!! You're going to be okay.

 

Ha ha we have had many go rounds on this topic! For me, I wasn't getting better and my last holdout was my beauty products. If you have short hair, maybe you can get away with it, but long hair just gets it in your mouth. The hair brushes on your face, you push your hair back with your hand and somehow that gluten gets you. Well it does me. My hairdresser has celiac and is usually so careful about products. She used a new spray thingy on me the last appointment. I went home and had awful D and was so sick. Had not been glutened in ages. Sure enough, wheat in her new spray. She didnt read it carefully. I do not have a wheat allergy. When something sprays into the air, it is going to get on your lips and all you need is trace gluten to feel sick.

 

When you shower if there is wheat in your hair products you will be surprised at how easily it gets in your mouth as it washes down your face. And it will stay on your hands. Gluten is sticky binding stuff. 

 

So... if you are still having symptoms after going gluten free, give the products thing a try. I saw many people on here who were adamant that they did not, needed not, would not change their beauty products, but they were constantly whining about lingering symptoms. I remember one guy in particular, he who will not be named, who was miserable, and complaining every single day about how nothing he did would make him feel better. But he would not, no never, get rid of his favorite wheat containing shampoo. Last I saw him, he was still sick and still loving his soft silky wheat filled hair. 

 

Most products won't claim gluten free but the wheat is clearly labeled. It's very easy to spot the word wheat on the label and run for the hills. 

 

Redken, Biolage, Enjoy all have many gluten free products. Again it will NOT say this on the label. You need to read. 

I've never seen gluten in any Bath and Body Works so far.

Bare Minerals, Benefit and Tarte have many make up options.

I use H2O Plus on my face and I've never seen gluten in anything in 15 years of using their stuff. I always double check though since they revamp their lines often.

Be careful with "organic" and "natural" brands. Frequently they are wheat monsters. 

Suave is good for cheaper stuff. 

 

My husband also uses gluten free products. He washes his face and puts on his manly dude lotion. Then I kiss his cheek and whammo... big D, if there is wheat in there. Or he washes his hair with gluten shampoo and conditioner, then lays next to me on the pillow. His hair brushes past my face and there you go... big D again. 

 

Unless you are totally free of symptoms, feel amazing and are 100% certain you are doing great in your gut, you are playing with fire using products that contain gluten (just about always in the form of wheat this or that from what I've found.) 

 

I don't care what some guide says or a book says. They aren't you. They don't have to spend hours on the toilet with you or deal with the gut pain. Tread carefully with the products because it just might be the difference between better and great for you. Celiacs have been given bad advice from doctors and experts since the dawn of time, so do what you need to do in order to be well. It is worth an hour of your time in an Ulta reading labels or a couple of hours in the aisles at Walmart for your well being. 

 

As you can tell this is a passionate issue for me. I want my celiac friends to THRIVE!!! 

[Georgia-guy]

he who will not be named

Sorry, but I'm bald right now, and make-up has never really been my thing, but this one line here i just can't resist it....Voldemort has celiac?

[notme]

Sorry, but I'm bald right now, and make-up has never really been my thing, but this one line here i just can't resist it....Voldemort has celiac?

nah, that's:  he who *shall* not be named (voldemort) lolz, too funny, gg  

[nvsmom]

LOL

[ConnieT]

I was diagnosed in March-and some days are good, others not so much. My TTG levels were through the roof-but in a very short time I have brought them to normal.  I am learning that I cannot eat several dairy products right now, that beans are not a good idea at the moment (it seems that any food that is hard for non-celiacs to digest is impossible for me right now) and the challenge is that you do not know it will bother you until it is too late...

According to my specialist, my nutritionist, and everyone else who knows this disease, I live in the best Canadian city if I am a celiac. We have tons of dedicated restaurants, bakeries, and products available to us. I get tired of everyone here telling me that I should go buy this and go eat here-Celiac is a challenging disease when you have a tight budget. I gave up on baking-and I do not need to eat dried up bread that costs three times that of a normal loaf. I have had those days where this is simply overwhelming, and I have cried at the loss of cinnamon scones in my life. I am hoping that I will get to a point where most days feel good-but I am reminding myself every bad day that I am in the beginning of my recovery and I have to patiently hope it will get better. It sucks to be so intimately familiar with every detail of my bathroom because of time spent....you know. Thank you to all of you for being out here and helping the rest of us figure out this weird world that we now live in, this is far more helpful to me than sitting through yet another celiac workshop where they say "if you have to have a disease, this is the best one to get"....and to keep explaining to people that this is not a trendy diet for me, this is my life, my reality, and if you ask me how my diet is going one more time I am going to punch you......

 

Connie

[Gemini]

When you shower if there is wheat in your hair products you will be surprised at how easily it gets in your mouth as it washes down your face. And it will stay on your hands. Gluten is sticky binding stuff. 

 

You are right....we could go round and round with this subject but Irishheart is correct.  Unless you have a wheat allergy, on top of celiac, or are extremely careless about drinking your products, there is no need to use gluten-free skin and hair products.  You cannot argue with science and common sense.  However, if it makes you feel more comfortable doing so, then by all means use gluten-free everything. That way, you can have your shampoo and drink it too!  ;  )    An added note......gluten will not stay on your hands if you wash them and rinse well.  If what you say were true, we would never heal and have to live in a bubble. This is the type of talk that keeps newbies afraid and celiac myths alive, when they should have died a natural death.

 

So... if you are still having symptoms after going gluten free, give the products thing a try. I saw many people on here who were adamant that they did not, needed not, would not change their beauty products, but they were constantly whining about lingering symptoms. I remember one guy in particular, he who will not be named, who was miserable, and complaining every single day about how nothing he did would make him feel better. But he would not, no never, get rid of his favorite wheat containing shampoo. Last I saw him, he was still sick and still loving his soft silky wheat filled hair. 

 

Your friend could be still symptomatic for many reasons so don't assume it's his shampoo.

 

My husband also uses gluten free products. He washes his face and puts on his manly dude lotion. Then I kiss his cheek and whammo... big D, if there is wheat in there. Or he washes his hair with gluten shampoo and conditioner, then lays next to me on the pillow. His hair brushes past my face and there you go... big D again. 

 

I'm sorry but this is a big eye roll moment.     You become glutened by your husband's hair brushing past your face???????  Does he not rinse his hair after washing? 

 

Unless you are totally free of symptoms, feel amazing and are 100% certain you are doing great in your gut, you are playing with fire using products that contain gluten (just about always in the form of wheat this or that from what I've found.) 

 

This is how I am doing after 9 years gluten-free and I do not screen anything except hand lotion and lipstick.  I am about as sensitive as a celiac can get and suffer horribly when glutened so I guess I am the miracle woman in that I have survived and flourished on the gluten-free diet for so long, without becoming paranoid about wheat everywhere.

 

I don't care what some guide says or a book says. They aren't you. They don't have to spend hours on the toilet with you or deal with the gut pain. Tread carefully with the products because it just might be the difference between better and great for you. Celiacs have been given bad advice from doctors and experts since the dawn of time, so do what you need to do in order to be well. It is worth an hour of your time in an Ulta reading labels or a couple of hours in the aisles at Walmart for your well being. 

 

It's hard for me to be critical because I am so happy you are doing so well.  But in order for a person to feel drastically better after eliminating personal care products, they would have had to be ingesting them into their guts for a Celiac reaction to take place and that is established science.  Do you really want to be eating your shampoo and conditioner?  I would be more concerned about eating shampoo long term. The guidelines that are given are good science and not bad advice from doctors. I would agree with your advice if you are the person who stands in the shower and lets soapy water run down your face all the time but many poeple do not do this so the risk is almost zero if you don't.  I just do not want people to get the wrong idea and think you will not heal and be well again if using shampoo with a wheat componenet to it because that is just not true.  Those things are not meant to be ingested and it isn't all because of gluten.

 

 

[Brian Jackson]

I was diagnosed in March-and some days are good, others not so much. My TTG levels were through the roof-but in a very short time I have brought them to normal.  I am learning that I cannot eat several dairy products right now, that beans are not a good idea at the moment (it seems that any food that is hard for non-celiacs to digest is impossible for me right now) and the challenge is that you do not know it will bother you until it is too late...

According to my specialist, my nutritionist, and everyone else who knows this disease, I live in the best Canadian city if I am a celiac. We have tons of dedicated restaurants, bakeries, and products available to us. I get tired of everyone here telling me that I should go buy this and go eat here-Celiac is a challenging disease when you have a tight budget. I gave up on baking-and I do not need to eat dried up bread that costs three times that of a normal loaf. I have had those days where this is simply overwhelming, and I have cried at the loss of cinnamon scones in my life. I am hoping that I will get to a point where most days feel good-but I am reminding myself every bad day that I am in the beginning of my recovery and I have to patiently hope it will get better. It sucks to be so intimately familiar with every detail of my bathroom because of time spent....you know. Thank you to all of you for being out here and helping the rest of us figure out this weird world that we now live in, this is far more helpful to me than sitting through yet another celiac workshop where they say "if you have to have a disease, this is the best one to get"....and to keep explaining to people that this is not a trendy diet for me, this is my life, my reality, and if you ask me how my diet is going one more time I am going to punch you......

 

Connie

 

Thank you for posting this Connie, sometimes we need reminders that it takes a while to heal I was diagnosed in early July with celiac and I have more bad days than good days right now. As you can tell I am impatient... I just have to keep telling myself it takes a while to heal. I am 100% gluten-free and have been since my diagnosis. Hopefully we will both be feeling better soon! I know one thing though, being gluten-free has made me a lot healthier, even though I don't feel better yet. I eat a lot more fruits and veggies, cut out the soda, etc... Down the road I am sure I will be glad I did this

[J3C]

I used to post here all the time. I don't have time anymore, so I come on once in a great while. I just wanted to share where I am at 5 years into being gluten free as encouragement for the newbies.

 

I was diagnosed at the age of 40. Extremely ill at diagnosis. It took me a full 6 months gluten free to have one symptom free day. I had horrible withdrawals from gluten. I highly suggest that newbies use the search function on here and read all the old threads about withdrawals and the healing period so you know it is normal.

 

I was so overwhelmed when I found out I had celiac that on my first shopping trip after diagnosis, I had a massive panic attack. I left an entire cart full of groceries in the line at Sprouts, ran to my car hyperventiliating, barely made it home because I felt like I was going to pass out and cried hysterically on my couch for over an hour. 

 

But I got used to it. My little boy was diagnosed after me so our whole house went gluten free. I got a gluten-free bread maker and learned to make my own bread. I found plenty of safe restaurants in our area we can eat at.

I learned to bake cookies and cakes that will knock your socks off. As a matter of fact we went to a campout with some other families. One guy made peach cobbler in his dutch oven, so I made us a gluten-free version in my dutch oven so we wouldn't be left out. A couple of friends tried mine and secretly told me my gluten free on was way better, no comparison.

 

My son used to have a hard time feeling left out with snacks and things. I always bring him matching alternatives to what is being served at gatherings and parties. But eventually he came to realize he is healthier because of it and he is happy being gluten free.

 

I was intolerant to soy, dairy and night shades at first. Now I eat dairy all the time with zero issues and love my night shades. Soy still gives me a stomach ache so I avoid that one, but it's livable. 

 

Parties and pot lucks are a bit more difficult for me but they are no longer stressful. My friends have actually started making gluten free stuff for me at get togethers without me even asking.

 

I came here to write up a review of a great restaurant that is nearly all gluten free, and then I thought I would like to share with others. I know when I was new to celiac I was a total wreck. I was so sick, so miserable and I felt like I would never get better, that my suffering would never end. I'm Italian and I cried my eyes out over pasta and raviolis. Then I learned how to make gluten free pasta taste amazing. Whatever you are going through now WILL get better. Some of us still have other intolerances like me with soy, but you deal with it and you learn to make things less about food. I am okay going to a party and letting it be about the friends and not about the food. 

 

So hang in there newbies! If you feel sick and horrible, pamper yourself. Spend lots of time in bed. REST. SLEEP. Eat clean until your body feels better. Eating clean and going off almost all grains is a gift you can give yourself now. 

 

I just ate the most scrumptious homemade gluten free cherry cupcakes with creamy homemade gluten free ice cream. And my tummy is stuffed but it is not sick.

 

Blessings to all of you! 

Sandsurfgirl

Thank you for this post.  This has been the most awful, exhausting, heart sickening period of my life.  I am just at the beginning of the journey you've been on for 5 years, and I have no idea how I'm going to do this for the rest of my life.  But this glimpse into the future is very encouraging.  Thank you for that. 

[Andirubes]

I'm also struggling as a newbie, and your post is giving me some hope. I'm struggling, not with the food itself, as I enjoy my fruits, veggies, and clean meats, but with wondering why I'm not getting better after almost a month of my strict gluten free diet, and carefulness against cc. I'm not giving up, but I'm frustrated, (as I type this from a bed on my vacation due to an unknown cause of another random stomach attack). I was doing well with accepting that I can't eat the boardwalk deliciousness, but more depressed that I'm still not well after wing so careful! What a struggle! Thank your for your encouraging post! I hope to be a success story on here someday as well!

[alesusy]

Hi there everybody.

I want to thank Sandsurfgirl...

I am Italian too and I am gluten-free since December 2012. it's been a long road and I am still sick - not all the time, but often enough to bring me to my knees, or rather to have a feeling of malaise, even if my antibodies have long been in the normal range.  My gut is very delicate (I was a 3B marsh, dx at 47, after years of suffering). Just now I am struggling with lingering symptoms from a restaurant meal where gluten found a way into a steak and roast potatoes (don't exactly know how). It's been ten days and while, thankfully for me, I can function when glutened after the first bout of D, I am still fighting gut pain, tiredness, brain fog etc.

Actually I came here today to ask whether TEN DAYS of lingering symptoms is normal!

The good thing is that when I am well, I have energy as I didn't remember having in... decades.

 

A word about beauty stuff etc. Of course you do not absorb gluten through your skin. But personally I tend to be wary. Cream goes on hands, hands get washed imperfectly, fingers find their way into my mouth. Hair spray in on my hair, hair spray is on my pillow, my mouth is on the pillow. Actually, CAT FOOD is theoretically a problem too - or maybe not theoretically. I have two (cats), old and ailing and cranky about food. Food with unspecified "cereals" goes into dish and splashes on my fingers. Ok, so i wash very well my hand after feeding them. But cat eats food, cat licks himself clean, cat walks all over the kitchen looking for more food (yes, try to teach a cat NOT to walk over kitchen counters) or sleeps on couch or sleeps on bed... Is it implausible that some of those 'cereals' find their way into my gut? I don't think so.

 

Bottom line is, it takes TIME. More than I supposed when I started. I though in six months I'd be OK. Now I know that six months is just the time you need to placate your antibodies (more or less, everyone is different, of course). Then your villis have to grow up again. And your gut reacts from anything which might be of difficult digestion for 'normal' people.

[cyclinglady]

Hi there everybody.

I want to thank Sandsurfgirl...

I am Italian too and I am gluten-free since December 2012. it's been a long road and I am still sick - not all the time, but often enough to bring me to my knees, or rather to have a feeling of malaise, even if my antibodies have long been in the normal range.  My gut is very delicate (I was a 3B marsh, dx at 47, after years of suffering). Just now I am struggling with lingering symptoms from a restaurant meal where gluten found a way into a steak and roast potatoes (don't exactly know how). It's been ten days and while, thankfully for me, I can function when glutened after the first bout of D, I am still fighting gut pain, tiredness, brain fog etc.

Actually I came here today to ask whether TEN DAYS of lingering symptoms is normal!

The good thing is that when I am well, I have energy as I didn't remember having in... decades.

 

A word about beauty stuff etc. Of course you do not absorb gluten through your skin. But personally I tend to be wary. Cream goes on hands, hands get washed imperfectly, fingers find their way into my mouth. Hair spray in on my hair, hair spray is on my pillow, my mouth is on the pillow. Actually, CAT FOOD is theoretically a problem too - or maybe not theoretically. I have two (cats), old and ailing and cranky about food. Food with unspecified "cereals" goes into dish and splashes on my fingers. Ok, so i wash very well my hand after feeding them. But cat eats food, cat licks himself clean, cat walks all over the kitchen looking for more food (yes, try to teach a cat NOT to walk over kitchen counters) or sleeps on couch or sleeps on bed... Is it implausible that some of those 'cereals' find their way into my gut? I don't think so.

 

Bottom line is, it takes TIME. More than I supposed when I started. I though in six months I'd be OK. Now I know that six months is just the time you need to placate your antibodies (more or less, everyone is different, of course). Then your villis have to grow up again. And your gut reacts from anything which might be of difficult digestion for 'normal' people.

10 days after a glutening is normal, to me at least! Hope you feel better soon!

[BarryC]

Thanks for the great words of encouragement. After finally realising that gluten was my problem, a month into mostly gluten free I am much better. The big belly has gone down a full belt notch and the joint pains and mental symptoms are gone.   I say mostly gluten free  because unlike  a full blown Celiac, God Bless them,  I don't have to be super observant about what I eat-for me its basicly anything containing flour. 

Question: Someone gave me a 'spudnut' the other day-they assured me it was made from potato flour. My bloating and nausea returned in an hour. They later admitted it  was made with wheat flour. How much will this set back my gains?

[GottaSki]

Thanks for the great words of encouragement. After finally realising that gluten was my problem, a month into mostly gluten free I am much better. The big belly has gone down a full belt notch and the joint pains and mental symptoms are gone.   I say mostly gluten free  because unlike  a full blown Celiac, God Bless them,  I don't have to be super observant about what I eat-for me its basicly anything containing flour. 

Question: Someone gave me a 'spudnut' the other day-they assured me it was made from potato flour. My bloating and nausea returned in an hour. They later admitted it  was made with wheat flour. How much will this set back my gains?

How do you know you don't have celiac disease? A reaction like that certainly sounds familiar to this full blown celiac....and her children that were difficult to diagnose celiacs.

[BlessedMommy]

Ditto to the above. Have you tested for celiac and ruled it out? It's possible to have celiac and not have visible outward symptoms when cross contaminated with gluten.

[blueshades]

Thank you for posting this encouragement

I have a wheat allergy and have been struggling with the lingering symptoms now and then.

I was diagnosed with wheat allergy around 2.5 years ago by my gastro specialist. When i went back to my GP with the results and told her i think i might try going off wheat to see if i feel improvements she was very discouraging of that saying i should just keep coming back to see her and maybe run more tests. I did not go back to her at all after that because she was a waste of my time and just wanted to make money off me by getting me to show up to useless visits without helping me! Even till this day i can't believe she thought it was ok for me to not cut out wheat even after i was diagnosed allergic!

 

I was on my own so i went off wheat and noticed the intense pain i felt every morning was gone and continued from there. It has been tough learning everything but these forums have been my support. Every time i felt sick i would come here and read other people's struggles and feel i'm not alone and it will get better if i keep trying.

Late last year i started going through my skincare and make up. I am wheat allergic and use to get hives all over my body. I later realised it was during the time i used a body lotion with wheat germ oil that i would react. I am still testing a lot of products at the moment and still trying to figure out what is safe for me. At the moment i am still struggling but just recently i had a glimpse of what it feels like to feel OK. It only lasted a few days but i felt like i could do anything if i felt this good the rest of my life. Everything i held back on and was too afraid to do seemed slightly more possible.

I hope to feel good and better consistently for a long long time that i don't feel like this is a struggle anymore. It is easier now but i still slip up now and then by accident. I hope everyone keeps posting all their experiences here as it has been so helpful to me and others.

 

Thanks everyone

[JennyD]

Thanks for the encouraging words, I have been struggling with frustration of being sick, feeling "left out" at parties and get togethers... just learning to re-live life in a healthy positive light. this really is helpful, thank you.