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Need Advice From The Seasoned gluten-free Folks


pixespirit

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pixespirit Rookie

Hola,

I've been on a gluten-free diet since January---the day I was diagnosed. It took 4 months for my yucky symptoms to go away. I still get contaminated from time to time when I'm out to lunch---Symptoms are severe bloating and lethargy. I am a full time professional, mother, wife, and graduate student. I took a medical leave of absence for a year because after 2 years of working (what felt like 3 full time jobs), I felt that I really needed more time to get my health back in order. I've become a great cook--but I still come home exhausted every day to the point of needing to rest.

I thought I read somewhere that the healthier you get (with becoming gluten-free) the MORE sensitive you become. Is this true? For instance, I have patches on my face from sun exposure (which I've never had in my life). It takes for ever for scrapes and bruises to heal. When preparing green chilies for the grill last night, I started coughing from the vapors and even after washing my hands with soap, I rubbed my nose and cheeks which burned for two hours there after from the green Chile vapors. Seriously? I would love some feedback on this. I don't need any more sensitivities in my life.

Also, the whole strand on make up, shampoo/conditioner was quite confusing. The last person who posted made more sense. So, if my eye shadow has wheat in it, it's probably safe to use because I don't lick my eyes. It's more of lipsticks. And the hair thing----I'm a product elitist---I'd like to know what higher end products do not have gluten in them. Any information would be appreciated.

Many thanks,

Alissa


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scarlett77 Apprentice

Hola,

I've been on a gluten-free diet since January---the day I was diagnosed. It took 4 months for my yucky symptoms to go away. I still get contaminated from time to time when I'm out to lunch---Symptoms are severe bloating and lethargy. I am a full time professional, mother, wife, and graduate student. I took a medical leave of absence for a year because after 2 years of working (what felt like 3 full time jobs), I felt that I really needed more time to get my health back in order. I've become a great cook--but I still come home exhausted every day to the point of needing to rest.

I thought I read somewhere that the healthier you get (with becoming gluten-free) the MORE sensitive you become. Is this true? For instance, I have patches on my face from sun exposure (which I've never had in my life). It takes for ever for scrapes and bruises to heal. When preparing green chilies for the grill last night, I started coughing from the vapors and even after washing my hands with soap, I rubbed my nose and cheeks which burned for two hours there after from the green Chile vapors. Seriously? I would love some feedback on this. I don't need any more sensitivities in my life.

Also, the whole strand on make up, shampoo/conditioner was quite confusing. The last person who posted made more sense. So, if my eye shadow has wheat in it, it's probably safe to use because I don't lick my eyes. It's more of lipsticks. And the hair thing----I'm a product elitist---I'd like to know what higher end products do not have gluten in them. Any information would be appreciated.

Many thanks,

Alissa

I would check that you aren't getting gutened somewhere because some of those things (like the healing time) may be a vitamin deficiency. I personally am not Celiac (my son is) so I can't really answer the question about becoming more sensitive, but I too have read that many Celiacs do seem to have more acute reactions after being gluten-free for a long period of time. I could see how that would make sense though.

As I see it if it can be ingested in any way then you could have a reaction to it...so that goes for lotions, foundation, lip products, hair products, perfumes, and detergents. I personally don't worry too much about the eye makeup but that is mostly because I am not Celiac and my Celaic son is not going to be kissing my eyes. I only have 1 Karastasse product at home right now and that is gluten-free. I've been kind of broke the last year so I haven't had the opportunity to check out the other items in the line. I would love to hear if anyone has anything to say about hairspray (besides Paul Mitchell). I have Sebastien Shaper 0g but have been afraid to use it because I have not been able to verify the tocopheryl source or get any kind of answer on whether it is gluten-free or not.

luvs2eat Collaborator

I was gluten-free for about a year when I couldn't take baking awesome bread for others... and scarfed down a huge slice of homamade challah bread, slathered it w/ butter ... WITH NO REPURCUSSIONS!!

I had visions of scheduling a monthly "cheat" ... pizza one month and french bread the next.

I never got to test the theory. The next time I accidentally ingested gluten... I was sick as a dog. Those days of the idea of "scheduled cheats" are long gone. I've become very sensitive and would never purposely ingest gluten!!

sandsurfgirl Collaborator

Alissa you are a girl after my own heart. Let's talk products girlfriend! I have never found barley or rye in anything. Just wheat galore. Somebody posted that only cheaper products have wheat. SOOO not true. I spent 2 hours in a beauty supply and all the good stuff is wheat laden except a few.

Enjoy and Biolage by Matrix are gluten free, but read the labels to make sure just in case I missed one they snuck wheat into.

Redken is full of wheat but they have a new anti aging line that does not have it and it's wonderful!

Biosilk clear leave in treatment is great. NO wheat. I think their shampoo and conditioner do have wheat.

H2O Plus is the BEST skincare I've ever used. They sell it online and at Ulta. I started on it at 30 and I'm not kidding, now at 40 my skin looks better and younger. I swear! I have not found one thing with gluten in their products.

I haven't found any gluten in Bath and Body works but do read just in case for different scents.

I use Mac, Bare Minerals and Benefit make up.

So here's the deal. Shampoo and conditioner run down your face and into your mouth in the shower. Lipstick and base make up obviously will get in your mouth. Soaps and lotions stay on your hands and then you eat, scratch your face etc. I don't worry about eyeshadow, blush, or mascara, etc. But everything else I am careful with.

NO decent products label themselves gluten free. They are afraid of the morons who file lawsuits. So you have to read the labels for wheat, etc.

pixespirit Rookie

Alissa you are a girl after my own heart. Let's talk products girlfriend! I have never found barley or rye in anything. Just wheat galore. Somebody posted that only cheaper products have wheat. SOOO not true. I spent 2 hours in a beauty supply and all the good stuff is wheat laden except a few.

Enjoy and Biolage by Matrix are gluten free, but read the labels to make sure just in case I missed one they snuck wheat into.

Redken is full of wheat but they have a new anti aging line that does not have it and it's wonderful!

Biosilk clear leave in treatment is great. NO wheat. I think their shampoo and conditioner do have wheat.

H2O Plus is the BEST skincare I've ever used. They sell it online and at Ulta. I started on it at 30 and I'm not kidding, now at 40 my skin looks better and younger. I swear! I have not found one thing with gluten in their products.

I haven't found any gluten in Bath and Body works but do read just in case for different scents.

I use Mac, Bare Minerals and Benefit make up.

So here's the deal. Shampoo and conditioner run down your face and into your mouth in the shower. Lipstick and base make up obviously will get in your mouth. Soaps and lotions stay on your hands and then you eat, scratch your face etc. I don't worry about eyeshadow, blush, or mascara, etc. But everything else I am careful with.

NO decent products label themselves gluten free. They are afraid of the morons who file lawsuits. So you have to read the labels for wheat, etc.

Dear Sandsurf Girl---

Thank you for your informative post. It has given me some great ideas. I wish ingredients were more obvious! It's so frustrating for my kids to shop with me as I have to read EVERYTHING! Ugh. I went to Ulta w/ the intent of getting Bare Minerals, but they said they had some people with sensitive skin come in and say that it bothered their skin. So, I bought Pur Minerals. I went from Este Lauder (used all the products religiously for 5 years) to using the Pur Minerals as a base. I really like it a lot. I just sweat it off sometimes (living to AZ). Este's Doubleware lasted forever. I wrote Este and realized I could still use some of the products, but the moisturizer had to go--which led me to Exuberance. Those two products are gluten-free, BUT, they are made with tools that used to have gluten---so I'm fuzzy on wear to draw the line.

As far as hair products, my allergist suggested I get a dandruff shampoo which was offensive at first, but he said it would be helpful to use once per week.

What about alcohol? Ever since I was dx, I stick to red wines. I had vodka the other night and it didn't seem to bother me. I'm just curious if you have any other research I can benefit from. Also, have you had any reactions to suntan lotion or sunscreen? Or do you have any recommendations?

Thanks again for your recommendations. Now I need to see if my Origins perfume has gluten in it. I'll be very sad if it does---~A

pixespirit Rookie

I was gluten-free for about a year when I couldn't take baking awesome bread for others... and scarfed down a huge slice of homamade challah bread, slathered it w/ butter ... WITH NO REPURCUSSIONS!!

I had visions of scheduling a monthly "cheat" ... pizza one month and french bread the next.

I never got to test the theory. The next time I accidentally ingested gluten... I was sick as a dog. Those days of the idea of "scheduled cheats" are long gone. I've become very sensitive and would never purposely ingest gluten!!

Honestly, I don't intentionally cheat. It's not worth it. I live in a place where there is the BEST mexican food. Carne Asada tacos and Calde De Queso---both should be fine, but I believe some of the places I used to eat used some kind of marinade that had gluten. So, now, i just sit in my office and eat whatever food I bring. It's a bit depressing---but it is what it is...

sandsurfgirl Collaborator

Honestly, I don't intentionally cheat. It's not worth it. I live in a place where there is the BEST mexican food. Carne Asada tacos and Calde De Queso---both should be fine, but I believe some of the places I used to eat used some kind of marinade that had gluten. So, now, i just sit in my office and eat whatever food I bring. It's a bit depressing---but it is what it is...

Take one restaurant at a time. Go in there when it's not busy and speak to the owner or manager. Find out what you can eat there. Usually asada is fine but one place dipped theirs in the enchilada sauce which contains wheat flour. I have a great little family owned place near the beach where the owners know me and know my issues. They take care of me so well. We eat there literally once a week or sometimes twice and I have never ever gotten glutened by them. So it is possible.

Bare Minerals is great. I have no idea why she steered you away from it. You can always return it. But... Benefit has a powder make up that I love even more than Bare Minerals. It's called Hello Flawless and it does make your skin look flawless and stays on all day long and in the heat.


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dilettantesteph Collaborator

I got much more sensitive over time. It's been almost three years now and I am on a whole foods diet. I even have to peel peaches. It seems like pesticides might bother me. On the positive side, I get over glutening much faster now.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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