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Should I Only Eat Products Labeled gluten-free?

LoriG

By LoriG
in Coping with Celiac Disease

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LoriG Contributor
LoriG
Posted

Hi all,

I have been gluten-free 4-1/2 months and CF 2-1/2 months. My symptoms before enterolab results were chronic fatigue, insomnia, constipation, irritability, and depression. Since going gluten-free, insomnia and constipation are better, but I am learning the fatigue is the worst. I just drag through life. I also am hypothyroid.

Anyway, I have not purposely eaten any gluten so far. I'm not even sure if I'd know I got glutened or anything because everyday I feel the same crappy way. No energy, blah, and irritable which leads to depression because I have been sick for years.

In thinking about being glutened, I started to think maybe I need to be only eating whole foods or those actually "labeled" gluten free or call the company on everything I eat. Right now I look at the ingredients and if there are no gluten or casein ingredients, I eat it. Do I need to be that careful? For instance, I eat Frito corn chips or Garden of Eatin tortilla chips. Those bags don't say gluten free. One time I ate Xylitol tortilla chips that ARE labeled gluten-free and was nauseous for hours. Not sure what that was about?! <_< Was I glutened that one time or not? The problem is, unlike many of you, I don't know if I've been glutened - there is nothing obvious to me.

I am in such despair with the fatigue not getting better and I've spent thousands going around and around particularly with trying supplements to help this go faster. Just recently, I started l-glutamine to see if that will help at all. I am a mom of 3 kids, missing out on life because I am soooo tired.

Thank you so much for your help!

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Gemini Experienced
Gemini
Posted
Hi all,

I have been gluten-free 4-1/2 months and CF 2-1/2 months. My symptoms before enterolab results were chronic fatigue, insomnia, constipation, irritability, and depression. Since going gluten-free, insomnia and constipation are better, but I am learning the fatigue is the worst. I just drag through life. I also am hypothyroid.

Anyway, I have not purposely eaten any gluten so far. I'm not even sure if I'd know I got glutened or anything because everyday I feel the same crappy way. No energy, blah, and irritable which leads to depression because I have been sick for years.

In thinking about being glutened, I started to think maybe I need to be only eating whole foods or those actually "labeled" gluten free or call the company on everything I eat. Right now I look at the ingredients and if there are no gluten or casein ingredients, I eat it. Do I need to be that careful? For instance, I eat Frito corn chips or Garden of Eatin tortilla chips. Those bags don't say gluten free. One time I ate Xylitol tortilla chips that ARE labeled gluten-free and was nauseous for hours. Not sure what that was about?! <_< Was I glutened that one time or not? The problem is, unlike many of you, I don't know if I've been glutened - there is nothing obvious to me.

I am in such despair with the fatigue not getting better and I've spent thousands going around and around particularly with trying supplements to help this go faster. Just recently, I started l-glutamine to see if that will help at all. I am a mom of 3 kids, missing out on life because I am soooo tired.

Thank you so much for your help!

Don't get hung up on whether or not a product is labeled gluten-free or not. While that certainly makes things easier, all you need to do to remain gluten-free/CF successfully is learn your ingredients well and check labels on the things you eat. I only have called manufacturers two or three times in 3 years to verify gluten-free status because of questionable ingredients I really wasn't sure of. Some people feel they need to do this all the time but I found I didn't have to and have had wonderful success with the diet. No need in making things difficult and with time, it will become second nature for you.

As far as your fatigue is concerned, make sure you have a really good physician who will do COMPLETE thyroid panels on you and ask how you feel with each dose change. Most doctors do not treat thyroid correctly and their patients walk around with subclinical low thyroid and they will tell you every thing is fine....when it's not. Also, give the diet a little while longer if you are anemic as it may take a bit to recover from that. I suspect your thyroid is the culprit, though, with your fatigue. I have Hashimoto's myself and remember the fatigue until I found a doctor who knew what she was doing with that.

Hope you feel better soon!

kbtoyssni Contributor
kbtoyssni
Posted

I don't eat only products labeled gluten-free. This diet would be super expensive that way! I've learned the safe brands and by reading threads on this site frequently you'll learn if mainstream brands have CC issues. A good example are Quaker rice cakes and Frito Lay products (expect for Stax). It seems that many people have trouble with those two.

LoriG Contributor
LoriG
Posted
  • Author

Gemini,

Thanks for your reply. Trust me - I have been around and around w/ my thyroid this past 6 years and have educated myself. I know now to test tsh, free t3, free t4. I think because of the gluten, I wasn't able to get my thyroid regulated or something.

I was initially on levoxyl 6 years ago, and then in 2006 went to a natural doctor who tested correctly and that's when I realized my thyroid was bad. At that time, my ft4 was too high, and ft3 too low. Since then I've tried many different combo's of meds and doctors and the fatigue was still terrible. Then I went to enterolab and figured out the gluten issue. Currently, I am on armour at 3 grains, waiting for the next blood draw. My free t3 at last draw was 3.3 - I think the range is 2.3 - 4.3 I told this new doc that I want it to the top of the range to see if that helps with the fatigue. So sick of it all really!! Everyone keeps telling me that 4-1/2 months gluten-free is no time at all especially eliminating the fatigue. I see a ND now and he says malabsorption is my issue. Who knows? I think I may just stop eating everything!!! :o

mamaw Community Regular
mamaw
Posted

hI

I would guess your thyroid is not correct. Remember the thyroid runs the whole body so it can play havoc on everything. I almost died because of doctors not treating my thyroid correctly. I'm still not back to normal & I ended up taking Ra to kill off my thyroid in may 07 & use synthroid now but I don't feel good. I have a doctor who hates armour.. and I don't care for the doctor !!!! I'm still on a roller coaster most days......

Good luck

mamaw

cattriona Newbie
cattriona
Posted

Hi LoriG

You have to be careful with some foods that are labelled 'gluten free'. I find that some things may say that they are gluten-free, but they contain things like soy sauce which most of the time has gluten in it. I guess you also have to be careful where the product comes from, as some countries' standards on what's acceptable as gluten-free aren't the same as in countries like America.

I find that a lot of products that aren't labelled gluten-free don't necessarily contain gluten and are fine to eat.

I hope that everything gets better for you!

hathor Contributor
hathor
Posted

Things that are naturally gluten-free cannot (yet) be labeled that way in the US. So you unnecessarily restrict yourself if you want a gluten-free label first.

I find that I can figure out the gluten-free status (or reputation for possible CC) most of the time by googling on the name of the product plus the word "gluten." I've only had to contact manufacturers a very few times.

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LoriG Contributor
LoriG
Posted
  • Author

Thank you for everyone's reply. I will try the google thing!!

kylesmom1112 Newbie
kylesmom1112
Posted

are your medications gluten-free/CF? just a thought..

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