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Round 2 In gluten-free Product Realizations


carriecraig

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carriecraig Enthusiast

Well, after being almost 6 months gluten-free, I'm feeling much better, but not completely well yet. In the beginning I was so good with my eating - only had 1 slip up, and within weeks I felt great. So, after posting about BMs and gas, I realized that there are a lot of products that I'm still using that are not gluten-free. For instance: Beano, Rolaids soft chews, Aveda shampoo/conditioner, some make-up. Uuuggghhh - this is really frustrating!

Did anyone else go through this?

Looks like I'm starting from scratch - including removing dairy from my diet, and updating all of my products.


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KaitiUSA Enthusiast

Yep, I did not change my products at first because I really had no clue. I was improving but not really like I should have been. I then found out about my products and all that stuff and it all started to come together. I got all gluten free products from perfumes to hairsprays to makeup to cleaners and more...I can't tell you how much improvement I have made since then and how much I wish I would have found out about that sooner...it helps to know everything I use is gluten free so I don't have to have that worry in the back of my head like when you are in the store walking down the bread isle hoping the bread doesn't attack you :blink:

Rachel--24 Collaborator
it helps to know everything I use is gluten free so I don't have to have that worry in the back of my head like when you are in the store walking down the bread isle hoping the bread doesn't attack you :blink:

:lol::lol:

That made me laugh!

Whenever I walk down the bakery aisle at work I'm kind of sketchy like that. I find myself holding my breath when I walk past the flour....like its gonna *get* me. :lol:

carriecraig Enthusiast

Ha, my husband teases me all of the time about bread. He loves to ask if I want any when we are in a restaurant or at the store. So glad he can get a laugh. :lol:

jerseyangel Proficient

Kaiti--Thats what happened with me. I started out with the diet and didn't know about the other stuff. My Dr. (who I like) basically said "gluten free, dairy free diet, see you in 2 months". I learned a lot right here about the products. I got rid of everything w/gluten listed and lined up everything else and began making phone calls. At that point, I was better, but not great. Once all the gluten was out, I really started to see steady improvement. Not eating out is also a huge help for me to stay well.

elonwy Enthusiast

Totally OT

OMG carriecraig the little kitten is so cute I could just die! <squeak>

rub the little belly ( on the cat please) for me would you.

love kittens

Elonwy

Carriefaith Enthusiast
I got all gluten free products from perfumes to hairsprays to makeup to cleaners and more...
What perfumes have you found to be gluten free?

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carriecraig Enthusiast

elonwy - I wish I could say that we still had the kitten. We were just foster mommy and daddy to him for 2 months. We got him when we was 3-4 weeks old - so cute! He grew and changed so much, and learned a lot while we had him, but he wasn't getting along with our other cat, so we returned him. I'm happy to say that he was adopted less then a week later.

jenvan Collaborator

Carrie- sorry you don't have the kitty anymore :( you are not alone! i thought i was gluten-free in the beginning...b/c no doctor or dietician brought to light cking my products etc. i found a few items like a MAC lip conditioner that were not gluten-free. you will get there--there is a learning curve for all of us!

lovegrov Collaborator

Beano has essentially a CYA warning, which is standard for GlaxoSmithKline. It's been tested to the lowest possible level and is negative. I know that all of this copmpany prescription drugs are gluten-free.

I went in the opposite direction of what you're talking about -- I eliminated things I later discovered were gluten-free and could be eaten. If it wasn't absolutely confirmed gluten-free it didn't go in my mouth or on my body. I was so sick I took no chances whatsoever. So although I've certainly made my share of mistakes, I can't think of anything I suddenly discovered that I was still eating had gluten.

richard

jerseyangel Proficient

Hi--A quick, stupid question: What does CYA mean?

floridanative Community Regular

cover your a--

jerseyangel Proficient

Thanks :)

eeyor-fan Contributor
Well, after being almost 6 months gluten-free, I'm feeling much better, but not completely well yet. In the beginning I was so good with my eating - only had 1 slip up, and within weeks I felt great. So, after posting about BMs and gas, I realized that there are a lot of products that I'm still using that are not gluten-free. For instance: Beano, Rolaids soft chews, Aveda shampoo/conditioner, some make-up. Uuuggghhh - this is really frustrating!

Did anyone else go through this?

Looks like I'm starting from scratch - including removing dairy from my diet, and updating all of my products.

Its an ongoing war...I'm still fighting it.

Guest kim07
Its an ongoing war...I'm still fighting it.

Eeyor fan-

Hey, don't knock yourself! It sounds like your doing great! :) I think everyone, who has the challenge of going on this diet, changing their entire lifestyle when it comes to what you eat, how you look at food, realizing gluten is in almost everything from shampoo to make up, we all go through what you are now! I still am, it is so frustrating!!!! <_<

I mean It was amazing to me to find out the products that contained gluten, that had nothing to do with food? And it is sooooooooooo over whelming at first. But you are on the right track, and you need to stick to it, and everyday you will gain more knowledge about certain products you can and can't use, and everyday (most importantly of all) your health will improve, and you will feel better. It is worth it, even though its frustrating as hell sometimes.

You do need to make sure, that what you bathe with is gluten free. (For example, for the longest time I was using Aveeno soap), that has oatmeal in it, and I couldn't figure out why my skin was so itchy after baths, duh!, I now use purpose, I don't inch anymore! I use Triple Moistrue Daily Deep Neutrogena Shampoo and Conditioner, I realized the shampoo and conditioner I was using before had gluten in it, most Neutrogena products are safe, but I don't think all are. You need to make sure your toothpaste is safe. The sunscreen and moisturizer you use on your skin are safe.

Make sure the hand dishwashing liquid you use to do the dishes are safe, your dishwashing liquid, your laundry soap, literally almost everything you can think of that you come in contact with.

I'm a huge make up fan, and I am still calling some of the make up companies, to see if I can use some of the make up products that I had originally, it just take lots of patience and time. Almost all of MAC products are gluten free, and that is what I switched to. Not all, so you really need to go to the MAC webpage, and call the company, but they are really nice. Bare essentuals is another company to try, they suppossedly have a lot of gluten free products as well.

This is what I have done. I find a product, usually one I already am using, like for example Cascade. Look up cascade on the internet, find the number, call the company, make sure its okay, and stay with that product. It's a lot of work, but its important for your health.

Go to the delphiforums list for a general overview of different mainstream products, that has been helpful to me.

Don't give up! You can do it! I'm brand new at it too! I'm only 3 weeks gluten free, and still calling companies about products I have questions about, I probably always will, (annoying drawbacks are holding, and listening to really bad MUSAC (music playing the commercials of the product your trying to find information about), like for example, "Have a coke and a smile, makes you feel good........!" It drives me CRAZY! You just kind of have to laugh about it.

Anyways you are doing fine, just keep it up,

that's what I'm doing, learning every day like you..

Kim

Eeyor fan-

Hey, don't knock yourself! It sounds like your doing great! :) I think everyone, who has the challenge of going on this diet, changing their entire lifestyle when it comes to what you eat, how you look at food, realizing gluten is in almost everything from shampoo to make up, we all go through what you are now! I still am, it is so frustrating!!!! <_<

I mean It was amazing to me to find out the products that contained gluten, that had nothing to do with food? And it is sooooooooooo over whelming at first. But you are on the right track, and you need to stick to it, and everyday you will gain more knowledge about certain products you can and can't use, and everyday (most importantly of all) your health will improve, and you will feel better. It is worth it, even though its frustrating as hell sometimes.

You do need to make sure, that what you bathe with is gluten free. (For example, for the longest time I was using Aveeno soap), that has oatmeal in it, and I couldn't figure out why my skin was so itchy after baths, duh!, I now use purpose, I don't inch anymore! I use Triple Moistrue Daily Deep Neutrogena Shampoo and Conditioner, I realized the shampoo and conditioner I was using before had gluten in it, most Neutrogena products are safe, but I don't think all are. You need to make sure your toothpaste is safe. The sunscreen and moisturizer you use on your skin are safe.

Make sure the hand dishwashing liquid you use to do the dishes are safe, your dishwashing liquid, your laundry soap, literally almost everything you can think of that you come in contact with.

I'm a huge make up fan, and I am still calling some of the make up companies, to see if I can use some of the make up products that I had originally, it just take lots of patience and time. Almost all of MAC products are gluten free, and that is what I switched to. Not all, so you really need to go to the MAC webpage, and call the company, but they are really nice. Bare essentuals is another company to try, they suppossedly have a lot of gluten free products as well.

This is what I have done. I find a product, usually one I already am using, like for example Cascade. Look up cascade on the internet, find the number, call the company, make sure its okay, and stay with that product. It's a lot of work, but its important for your health.

Go to the delphiforums list for a general overview of different mainstream products, that has been helpful to me.

Don't give up! You can do it! I'm brand new at it too! I'm only 3 weeks gluten free, and still calling companies about products I have questions about, I probably always will, (annoying drawbacks are holding, and listening to really bad MUSAC (music playing the commercials of the product your trying to find information about), like for example, "Have a coke and a smile, makes you feel good........!" It drives me CRAZY! You just kind of have to laugh about it.

Anyways you are doing fine, just keep it up,

that's what I'm doing, learning every day like you..

Kim

UGH, I'm SO SORRY THIS WAS FOR CARRY CRAIG

teebs in WV Apprentice

I was just recently diagnosed.....first with Dermatitis Herpetiformis by my dermatologist, and then confirmed with Celiac Disease by GI spec. I have been attempting gluten-free for 2 months, but I too keep encountering new things that are not gluten-free that I had not even thought of. My derm. prescribed Dapsone for the DH, and also gave me Doryx (form of tetracycline) for acne. I have been taking both for about 2 months. Yesterday it occurred to me that I had not checked if either of these were gluten-free. I asked the pharmacist who informed me that both were gluten-free. Not sure why, but I checked the mfr. websites and found that the Doryx contains wheat starch and is NOT gluten-free! It seems that I find something new each day!

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    • trents
      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
    • shell504
      Hello. I apologize. I didn't know there wasn't a standard.  The standard listed  for the IGA is normal range 47-310.  The others were all listed as <15.0 u/l is antibody not detected and 15> antibody is detected.  And the negative one the standard is negative.  It is a normal PCP dr. I do have a second opinion appt scheduled with a GI specialist in 2 weeks. Honestly, I haven't cut out gluten at all. I just switched to whole fibers and everything has been getting better. She wanted to do the test just to check, which I was fine with. We'll see what the GI dr says. Thank you for commenting. 
    • trents
      It is also possible that since eating the fries you have been glutened again during the week. I would double check the food in your cupboard and reread the ingredient lists. Food companies can and do change their formulations from time to time such that something that used to be gluten free is no more. What I am saying is, don't assume the distress you are experiencing comes from one incident of glutening. There could, coincidentally, be another one on it's heels. 
    • trents
      Welcome to the forum, @shell504! The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy. Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs. Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 
    • shell504
      I apologize i can't figure out how to get the picture on here.  Results were: IGA 401mg/dl Deamidated Gliadin IGG. <1.0 Deamidated Gliadin IGA. <1.0 Tissue Transglutaminase IGA AB. <1.0 Endomysial IGA. Negative.  Is she just going based off of the IGA alone? And because that is elevated, it's positive? The test states: "Results do not support a diagnosis of celiac disease." 
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