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Rhobhan

Are Supplements Labled "gluten Free" Really Safe?

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Perhaps not.

 

A month ago I started experiencing the worst gluten reaction I have had since being diagnosed in 2007. A visit to the gastroenterologist revealed a "high" reaction on the celiac blood panel. I had been glutened, and the possible suspect was a frozen pre-basted turkey my family had eaten, and I had had several helpings of leftovers.

 

After the weight loss and diarrhea remain unrelenting, I began to suspect that perhaps I was havign such a severe, long-lasting reaction due to increased hypersensitivity due to my increasing age.

 

I had switched to taking an array of supplement from Country Life, including a probiotic, for several months. They market themselves as a "completely gluten free facility," and all products are gluten free. Suspicious after  a recent news article revealed celiacs who take probiotics still continue to manifest symptoms compared to those who do not, and perhaps probiotics contain trace amounts of gluten.

 

i called Country Life and asked about their gluten and certified gluten free claims. Their definition, as the rep read to me verbatim, is "gluten free levels that fall BELOW 10ppm"—a stricter standard than the government standard of 20ppm, BUT THAT MEANS THEIR PRODUCTS MAY STILL CONTAIN GLUTEN!

 

So if I am and have been ingesting nine capsules of supplements per day, I am and have been getting a steady trickle of gluten for a long time!

 

I am quitting all supplements. Maybe another gastroenterologist I went to was right a couple years ago. He insisted ALL supplements contained gluten despite their claims and when I pointed out several supplement makers touted their gluten free lines, he didn't relent. I guess he was right.

 

Now, with osteoporosis, how will I manage to get the 1200mg of calcium per day?

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Once again, I think you don't understand the concept of gluten testing. There is no test that can say 0. Less than 10 ppm could mean 9 ppm ( an incredibly small number) or 0 ppm.

If your Celiac blood antibodies are very high, that is not likely from 1 or 2 servings of turkey with gluten.

You might want to check out the Fasano diet for people who are not responding to the regular gluten-free diet. This means little to no processed foods at all. I'll look for the link and post it here.

Here is a good explanation

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/


 

 

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I hear you! I just purchased some probiotics for my kid (she can eat gluten) after a course of antibiotics. The brand states that it is gluten free, but let's face it, supplements are not regulated by the FDA. Like you said, if you take higher doses (like my doctor would recommend) you may have a higher risk of accumulating gluten beyond what our bodies can handle.

I stopped all supplements when I discovered that I was not processing the folic acid and b-12 in my multi-vitamin about six months ago (extremely high blood levels and I was checked for cancer and liver issues). I vowed to get my nutrients from foods. My B-12 and folate levels have come down and I had to make sure that even processed foods (like my soymilk) were not being supplemented by the manufacturer. I have healed form celiac disease and I no longer have a lactose intolerance, so I am getting my calcium from dairy sources. I eat sautéed greens and other calcium-rich greens and that includes breakfast! I eat canned wild-caught salmon often and sardines. The bones are good sources of calcium. Finally, I am back on HRT to build bone and allow me to get restorative sleep (insomnia and severe hot flashes). I go for a bone scan in July and I am hoping that my food and exercise plan (running, swimming, riding) is working. I already have had some fractures doing nothing! I think it is working as I no longer have hip or rib pain when sleeping. Yeah!

As a diabetic, I am on a low carb, high fat diet. By reducing carbs, I have avoided many proceesed foods like gluten free grains. I eat them as an occasional treat. I feel much better eating this way which is basically just whole foods!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I hear you! After reading the article about probiotics testing positive for gluten I got scared. What if my probiotic has gluten? What about my thyroid med or D3? What if all 3 are under 20 ppm..but are each at 15. Would taking 3 things a day with that much gluten do something to me? I just don't know...but I don't like being scared.

I eat a really healthy whole foods diet. I still can't do large amounts of dairy so I don't know if I get enough D or calcium without supplements. I'm hoping I can get to a place like cyclinglady where I can do it all with food.


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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The supplements I take saved my life. Because I had celiac for a long time I'm sure I wasn't absorbing much of anything from my food. And because for the longest time I was also intolerant to corn I couldn't take any supplements.

 

It got to the point where I truly felt like I was dying. It wasn't just fatigue, and it's hard to explain but it felt like the light or flame of life inside me, whatever you want to call it, was growing so dim. When I found these vitamins and supplements that had no gluten or corn or soy, I was relieved. I started taking LOTS of them and eventually the "flame" grew stronger. And I really do think that the reason I got over the corn and soy intolerances is because my vitamin deficiencies went away so my immune system got stronger.

 

I still take 17 pills a day. Most are vitamins but I do also take glucosamine/chondroitin and my grape seed extract. It scared me too when I saw all the negative reports about a lot of supplements not containing what they claim to contain. The glusocamine may be helping a LITTLE. It's hard to tell. But I am 100% sure the vitamins are working, and the grape seed extract - I know I've mentioned it before , but it has been a Godsend. The jaw pain and swelling that has plagued me for years is GONE. I will continue taking it for as long as they keep making it.  


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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You have mentioned it before bart and your story has inspired me! The stories make me feel conflicted. Would you be willing to share the brand you are using safely?


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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Shopko Naturals. Shopko is a discount department store here in the midwest. Last time I checked they didn't sell vitamins and supplements online but I just checked again and now they do! I don't see the grape seed extract there, but lots of other stuff. Here's the link: http://www.shopko.com/category/Health-Beauty/Health/Vitamins-Supplements/pc/12/pc1/34/2893.uts


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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While there may be "no test that can say 0," the fact and question remains: there is and why is there gluten in foods and supplements that are supposed to be gluten free? How is it getting there? Cross-contamination from processing facilities that also run wheat products in their facility? Carelessness? The attitude that 10-20ppm is good enough?

 

I too doubted whether my sustained reaction to gluten was caused solely by several helping over the course of a week of suspect turkey, but if trace amounts of gluten was in the supplements that I was taking certainly couldn't have helped.

 

While I am better now, I have, without knowledge of the Fusano diet, put myself on a no-processed food diet. And no grains except brown rice. I will gradually add them back in and wait to see how I react.

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While there may be "no test that can say 0," the fact and question remains: there is and why is there gluten in foods and supplements that are supposed to be gluten free? How is it getting there? Cross-contamination from processing facilities that also run wheat products in their facility? Carelessness? The attitude that 10-20ppm is good enough?

 

I too doubted whether my sustained reaction to gluten was caused solely by several helping over the course of a week of suspect turkey, but if trace amounts of gluten was in the supplements that I was taking certainly couldn't have helped.

 

While I am better now, I have, without knowledge of the Fusano diet, put myself on a no-processed food diet. And no grains except brown rice. I will gradually add them back in and wait to see how I react.

But , testing for under 20 or 10 ppm doesn't mean there is any gluten, it's just the limits of the tests we currently have. If you used these same tests on the inside of an apple or potato, it would be the same result < 10 ppm or < 20 ppm ( depending on the test).


 

 

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I'm so sorry you're not feeling well. Yes, stop taking the Country Life. I got glutened from them 5 years ago. I was taking them for about 3 months and I was feeling worse. Once I stopped taking them I felt so much better. I now only trust Kirkman Labs. I am really sensitive and I've been taking the multi vitamin, Calicum and vitamin C for about 4 years now without issues. I hope you feel better soon!


Lisa

Infertility since 1995/Endometriosis

Hasimoto Thyroid disease 1998

Enlarged Abdominal Lymph nodes since 2003 - Stable

Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008

Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet

Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet

Celiac disease - positive upper endoscopy & Blood Test 9-2009

Undiagnosed celiac for 20 years - Gluten free since 9-13-09

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Probiotic supplements - kiefer (near yogurts), yogurt, kimchi (look in refrigerated items by frutis and veggies) , sauerkraut, pickles from the refrigerated section, soy bean paste (miso), hard apple ciders, kombucha...

Of course all of these are better if you make them yourself. Most are fairly easy. 

 

http://ecosalon.com/20-common-fermented-foods/

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What?? Country life isn't safe? Oh man. I have a ton of their products,

I bought them after getting glutened from a now brand supplement they claimed was gluten free.

Has anyone else gotten sick from country life?

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Perhaps not.

 

A month ago I started experiencing the worst gluten reaction I have had since being diagnosed in 2007. A visit to the gastroenterologist revealed a "high" reaction on the celiac blood panel. I had been glutened, and the possible suspect was a frozen pre-basted turkey my family had eaten, and I had had several helpings of leftovers.

 

After the weight loss and diarrhea remain unrelenting, I began to suspect that perhaps I was havign such a severe, long-lasting reaction due to increased hypersensitivity due to my increasing age.

 

I had switched to taking an array of supplement from Country Life, including a probiotic, for several months. They market themselves as a "completely gluten free facility," and all products are gluten free. Suspicious after  a recent news article revealed celiacs who take probiotics still continue to manifest symptoms compared to those who do not, and perhaps probiotics contain trace amounts of gluten.

 

i called Country Life and asked about their gluten and certified gluten free claims. Their definition, as the rep read to me verbatim, is "gluten free levels that fall BELOW 10ppm"—a stricter standard than the government standard of 20ppm, BUT THAT MEANS THEIR PRODUCTS MAY STILL CONTAIN GLUTEN!

 

So if I am and have been ingesting nine capsules of supplements per day, I am and have been getting a steady trickle of gluten for a long time!

 

I am quitting all supplements. Maybe another gastroenterologist I went to was right a couple years ago. He insisted ALL supplements contained gluten despite their claims and when I pointed out several supplement makers touted their gluten free lines, he didn't relent. I guess he was right.

 

Now, with osteoporosis, how will I manage to get the 1200mg of calcium per day?

Have you had a Dexa scan or anything to let you know you are osteopenic or indeed need to take all that supplemental calcium? Are you low on calcium (blood tests)? What about Vitamin D?

 

EDIT: Oh, sorry. I see you say you have osteoporosis. Ok, I'm not sure what to say here. Sorry for missing that the first time.

Edited by plumbago

Diagnosed with Celiac in 2010. Diagnosed with sleep apnea 2018.

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