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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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    • marion wheaton
      Are Lindt chocolate balls gluten free?

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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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