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Confused And Frustrated

Canadian Girl

By Canadian Girl
in Coping with Celiac Disease

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Canadian Girl Apprentice
Canadian Girl
Posted

Hey everyone, I'm new to this website, and just diagnosed as Celiac a few weeks ago. I had a positive blood test and positive endoscopy, so I think I must be pretty severe... I have had symptoms like bloating and thinning hair for the past few years, but don't think I've actually been Celiac for too long. I have been researching and reading everything, and although some things become clear, some just get more confusing. My main question that I cannot seem to get an answer for is about Artifical colours and flavours.... What are they?! If something has artificial colours and or flavours in them does that mean that it could contain gluten, but they don't have to disclose it? I've been told that colours are okay, but now I'm not sure! As well, as far as the makeup/lotions/shampoos etc... I read that the gluten molecules in skincare products are too large to pass thru the skin barrier and so I don't need to worry about reading ingredients in those.. but now I don't even know about that! Pls help me, I am so confused and getting frustrated about everything... :unsure: thanks in advance!

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YoloGx Rookie
YoloGx
Posted

Hey everyone, I'm new to this website, and just diagnosed as Celiac a few weeks ago. I had a positive blood test and positive endoscopy, so I think I must be pretty severe... I have had symptoms like bloating and thinning hair for the past few years, but don't think I've actually been Celiac for too long. I have been researching and reading everything, and although some things become clear, some just get more confusing. My main question that I cannot seem to get an answer for is about Artifical colours and flavours.... What are they?! If something has artificial colours and or flavours in them does that mean that it could contain gluten, but they don't have to disclose it? I've been told that colours are okay, but now I'm not sure! As well, as far as the makeup/lotions/shampoos etc... I read that the gluten molecules in skincare products are too large to pass thru the skin barrier and so I don't need to worry about reading ingredients in those.. but now I don't even know about that! Pls help me, I am so confused and getting frustrated about everything... :unsure: thanks in advance!

Welcome to the forum!

My hair by the way has gotten thicker and wavier since I went off all trace gluten. My nails have gotten stronger too, as well as my bones and teeth. This took around a year... I still have to take mineral supplements however to support stronger joints and connective tissue. Unlike you, I have had celiac most of my life.

I avoid shampoos and soaps with gluten in them since its easy to get trace amounts in my mouth while washing or even afterward. Makeup even more so. Honestly.

Its Natural flavors you have to worry about--they often have gluten in them, being extracted using alcohol that usually has gluten in it.

Of course replace your wooden boards and spoons and bakeware that has baked in gluten. You can put iron pans and pots in a self cleaning oven for an hour (600 degrees) to burn off the imbedded gluten. This cleans your oven too. Get a new toaster and toaster oven. Clean out your kitchen drawers, cabinets and fridge etc.

Just bite the bullet and make the changes. It takes a little while tracking things down but its worth it.

Canadian Girl Apprentice
Canadian Girl
Posted
  • Author

thanks so much, by the way.. i just realized that i spelled frustrated wrong in the title... i'm at work and was in a rush! lol. so that does help.. but I am still confused about the artificial flavours. Are they okay for us to have???

psawyer Proficient
psawyer
Posted

There are ingredients that are always gluten-free, for example "corn starch." There are ingredients that always contain gluten, such as "barley malt." And there are many ingredients in which gluten can be hidden. It is possible for gluten to hide in flavoring, but it almost never does.

Shelley Case, RD, in her book Gluten-Free Diet: A Comprehensive Resource Guide says,

It would be rare to find a "natural or artificial flavoring" containing gluten because: (a) hydrolyzed wheat protein cannot be hidden under the term "flavor," and (B) barley malt extract or barley malt flavoring is almost always declared as "barley malt extract" or "barley malt flavoring." For this reason, most experts do not restrict natural and artificial flavorings in the gluten-free diet.

For other ingredients which may or may not contain gluten, such as "modified food starch" you may need to contact the manufacturer to see if it is a gluten-containing starch (wheat will be labeled, but barley or rye need not be). There is a long list of companies and brands that you don't need to call because their policy is to always explicitly declare gluten sources by naming the grain in the ingredients list. The list includes Kraft, Unilever, General Mills and others. Open Original Shared Link In every case, these companies have the same disclosure policy in Canada as in the US.

Canadian Girl Apprentice
Canadian Girl
Posted
  • Author

There are ingredients that are always gluten-free, for example "corn starch." There are ingredients that always contain gluten, such as "barley malt." And there are many ingredients in which gluten can be hidden. It is possible for gluten to hide in flavoring, but it almost never does.

Shelley Case, RD, in her book Gluten-Free Diet: A Comprehensive Resource Guide says,

For other ingredients which may or may not contain gluten, such as "modified food starch" you may need to contact the manufacturer to see if it is a gluten-containing starch (wheat will be labeled, but barley or rye need not be). There is a long list of companies and brands that you don't need to call because their policy is to always explicitly declare gluten sources by naming the grain in the ingredients list. The list includes Kraft, Unilever, General Mills and others. Open Original Shared Link In every case, these companies have the same disclosure policy in Canada as in the US.

Ok thanks that helps a lot.. but in the first response it says we have to worry about natural flavours???? I don't understand that b/c isn't natural flavour okay??? how do i know if some gluten is hiding in artificial flavours or colours tho?? or natural ones?? I'm confused :( for instance, lots of chocolate and candy has artificial colours/flavours in them... how can i know???

psawyer Proficient
psawyer
Posted

I have never worried about colours.

I try to buy from the companies with a clear disclosure policy. But, based on Shelley's advice, I don't worry about flavours.

In theory, barley malt could be listed as natural flavour, but companies don't do that because it is a relatively expensive flavour so they want you to know that it is in there.

GFinDC Veteran
GFinDC
Posted

Ok thanks that helps a lot.. but in the first response it says we have to worry about natural flavours???? I don't understand that b/c isn't natural flavour okay??? how do i know if some gluten is hiding in artificial flavours or colours tho?? or natural ones?? I'm confused :( for instance, lots of chocolate and candy has artificial colours/flavours in them... how can i know???

You can check the manufacturer website for gluten info. Many of them have a page listing their products gluten free status. You can also purchase a shopping guide or search this site for info other people have found. Like Peter said, some companies always list gluten ingredients. For the others you would have to check them out.

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Reba32 Rookie
Reba32
Posted

When in doubt, don't eat it. Contact the food manufacturer and ask them specifically if the product has any wheat, barley or rye in it.

Canadian Girl Apprentice
Canadian Girl
Posted
  • Author

When in doubt, don't eat it. Contact the food manufacturer and ask them specifically if the product has any wheat, barley or rye in it.

Do i have to check for EVERYTHING that i eat tho?! :o as well i've read that i have to becareful of my bf's lip chap and all that, so does that mean that if he has a beer and kisses me i could get a reaction from that??? this is crazy! i have so much support which is making this a bit easier but i'm just more shocked each day when i learn something new... btw thanks for all the info you guys are great! :D

GFinDC Veteran
GFinDC
Posted

Do i have to check for EVERYTHING that i eat tho?! :o as well i've read that i have to be careful of my bf's lip chap and all that, so does that mean that if he has a beer and kisses me i could get a reaction from that??? this is crazy! i have so much support which is making this a bit easier but i'm just more shocked each day when i learn something new... btw thanks for all the info you guys are great! :D

You have to eliminate gluten (wheat, barley, rye, oats) from your diet. There are ways to do that without spending lots of time checking with companies and reading labels. A simple whole foods diet is a good way. Whole potatoes don't have a list of ingredients to check, they are just potatoes. Same with whole veggies of any kind. Most meats are safe, but you do have to watch out for ones that have injected flavorings or sauces basted on. People often say they avoid deli meats because of possible cross contamination from the slicer. But some stores will wipe the slicer clean for you or cut your meat order first thing in the morning before other use also. Just have to ask them.

Your BF could gluten you by kissing. Think about it. He has gluten in his mouth and there is contact so transfer is going to happen. Celiac is an autoimmune disease. Your immune system reacts to tiny things like bacteria and viruses right? So it does notice and take action when small microscopic amounts of antigens are ingested. Some of us are more sensitive and others are less sensitive to minute amounts of gluten. There are threads here on kissing and er, sex too. :blink: If you like reading that kind of stuff ;-). People manage to do those things without problems so you might want to check the threads for pointers.

The toaster is another gotcha item, and shared peanut butter or condiments containers where you use a knife to get them out. You will learn all this stuff as you go along. This is a great place to learn from other doing the same diet. Maybe BF could try some gluten-free beer?

Squirrelflight Rookie
Squirrelflight
Posted

Do i have to check for EVERYTHING that i eat tho?! :o as well i've read that i have to becareful of my bf's lip chap and all that, so does that mean that if he has a beer and kisses me i could get a reaction from that??? this is crazy! i have so much support which is making this a bit easier but i'm just more shocked each day when i learn something new... btw thanks for all the info you guys are great! :D

Yes. You have to check everything that you eat and be aware of what you are putting in your body. And yes.. the chapstick. I kissed dh last night after he put on chapstick and it got me. I believe burts bees is safe so pick both of you up some. :) And yes.. if he eats/drinks something with gluten and kisses you, you will probably react.

I am struggling with it too. It is a commitment to yourself and your health but it is not 'easy'.

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