Beware Country Life Vitamins! May Contain Wheat Germ Oil!

[Zloduska]

I have been a lurker on this forum for quite some time, however I am so upset by my recent discovery that I had to share. Apologies in advance for the length.

 

I have been diagnosed with celiac disease since early 2007 after life-long symptoms. I am unfortunately "super sensitive" to trace amounts, have DH skin issues, and react severely to any kind of oats (oats should not be allowed EVER in certified gluten-free products IMO, but that's another story.)  My symptoms are up and down and I have continued to suffer these last few years from inflammatory arthritis, allergies/asthma, and extreme insomnia/fatigue.  I have been trying so hard to be as strict as possible and investigate every single product I come in contact with, but it's nonstop madness and frustration and often feel like I'm going in circles. 

 

To me it seems like ever since the whole gluten-free thing (and the accompanying backlash) has gotten more popular, my suffering has gotten worse and I feel glutened more often.  I basically can't trust anything labeled gluten-free anymore, especially not certified gluten-free, as oats are now insidious, and I keep finding suspect practices at various companies.  Frankly, I feel worse off now with explosion of (usually faux) gluten-free products and gluten-free menus than I did several years ago with less products, less research required and less disbelief and sabotage from restaurant staff.

 

Here is another great example that enraged me today.  Y'all should be mad too, because I see plenty of people recommending Country Life Vitamins to others. I was a big supporter as well and kept buying more and more of their products, because they go to great lengths to advertise how safe their products are for celiacs.  Well, I was a fan until I saw this:

 

Open Original Shared Link

 

They are marketing a wheat germ oil supplement as gluten-free.  I really don't care about any song and dance of lies they may have concocted regarding how their wheat germ oil is magically made gluten-free, because I don't believe it for a second.  If I had a dollar for every time I got sick from something with the gluten-free certified label I could buy a yacht, sail away from this nonsense to a deserted island paradise, and live off coconuts relaxing on the beach with my monkey and dolphin BFFs.

 

As many of us know, recent scientific studies have proven that celiacs react to more proteins than just the gluten in wheat.   There are other proteins as well as cross-reactivity and cross-contamination that are an issue.  Do you feel safe eating actual wheat germ oil, or other vitamins made on the same equipment? I sure do not.

 

I contacted Country Life Vitamins and they basically did not care at all, simply giving me a canned response about how they are sorry I was not happy with their products and info on the return and exchange process, and failed to answer any of my direct questions about the use of wheat germ oil in their facility.  I also sent a complaint email to the GFCO that supposedly certified this as being gluten-free.  That email is: Open Original Shared Link

 

On that note, has anyone noticed an adverse reaction to Country Life? It's hard for me to tell since I often feel crappy.  I take a lot of supplements and am looking to source from the safest companies possible.  What about these other brands, any experiences either way? - Twinlab, Vitacost, Now Foods, Organic India?  Any input is appreciated!

[Gemini]

I have been a lurker on this forum for quite some time, however I am so upset by my recent discovery that I had to share. Apologies in advance for the length.

 

I have been diagnosed with celiac disease since early 2007 after life-long symptoms. I am unfortunately "super sensitive" to trace amounts, have DH skin issues, and react severely to any kind of oats (oats should not be allowed EVER in certified gluten-free products IMO, but that's another story.)  My symptoms are up and down and I have continued to suffer these last few years from inflammatory arthritis, allergies/asthma, and extreme insomnia/fatigue.  I have been trying so hard to be as strict as possible and investigate every single product I come in contact with, but it's nonstop madness and frustration and often feel like I'm going in circles. 

 

Oats are safe for many Celiacs and even for some of us sensitive ones.  Certified gluten free oats, of course. 

 

I am sorry you are not feeling well and have had a rough time of it lately. It sounds like you are having trouble adjusting to and understanding the many concepts of gluten free living because after 8 years gluten-free, you should not be having these ups and downs if you have no underlying conditions or more food sensitivities.  You certainly sound frustrated by it all, as we all have been in the beginning.....but this isn't the beginning for you.  Have you looked into underlying problems that may be causing your grief? 

 

To me it seems like ever since the whole gluten-free thing (and the accompanying backlash) has gotten more popular, my suffering has gotten worse and I feel glutened more often.  I basically can't trust anything labeled gluten-free anymore, especially not certified gluten-free, as oats are now insidious, and I keep finding suspect practices at various companies.  Frankly, I feel worse off now with explosion of (usually faux) gluten-free products and gluten-free menus than I did several years ago with less products, less research required and less disbelief and sabotage from restaurant staff.

 

You sound angry.  Many of us, and I am one who is very sensitive to small amounts, have not had too much trouble finding a number of gluten-free products that agree with us just fine.  Of course, Celiac's should stress a whole foods diet with a few gluten-free products thrown into the mix.  Have you been eating too many of these to heal properly?  Have you another sensitivity to an ingredient in  them you are not aware of?  It should not take this long to feel better and you should not be glutening yourself on a regular basis if you have learned the ropesof this lifestyle correctly.  I am not being harsh but much of what you say is not true and I will explain further.

 

Here is another great example that enraged me today.  Y'all should be mad too, because I see plenty of people recommending Country Life Vitamins to others. I was a big supporter as well and kept buying more and more of their products, because they go to great lengths to advertise how safe their products are for celiacs.  Well, I was a fan until I saw this:

 

Open Original Shared Link

 

They are marketing a wheat germ oil supplement as gluten-free.  I really don't care about any song and dance of lies they may have concocted regarding how their wheat germ oil is magically made gluten-free, because I don't believe it for a second.  If I had a dollar for every time I got sick from something with the gluten-free certified label I could buy a yacht, sail away from this nonsense to a deserted island paradise, and live off coconuts relaxing on the beach with my monkey and dolphin BFFs.

 

I have never seen this product before and the one thing that comes to mind is whether the product is so highly processed, it renders it gluten free.  It is labeled as certified to it must have been tested down to a certain level?  Did you get that number from Country Life?  I am in no way saying that I would take the product but it could technically be gluten free due to processing. The same process makes tocopherols, derived from gluten containing sources, to be gluten free. This is backed up Celiac Disease organizations, who I doubt would steer the Celiac community wrong.  I think more information on this would be needed to make any assumption on its gluten free status.

 

As many of us know, recent scientific studies have proven that celiacs react to more proteins than just the gluten in wheat.   There are other proteins as well as cross-reactivity and cross-contamination that are an issue.  Do you feel safe eating actual wheat germ oil, or other vitamins made on the same equipment? I sure do not.

 

Cross reactivity is not based on real science, period.  It has no validity at all.  I don't feel safe eating actual wheat germ oil but that is entirely different than eating something which is so highly refined, it renders it gluten free.  This is all science....just like distillation. And no.....I am not going to open that can of worms right now. 

 

I contacted Country Life Vitamins and they basically did not care at all, simply giving me a canned response about how they are sorry I was not happy with their products and info on the return and exchange process, and failed to answer any of my direct questions about the use of wheat germ oil in their facility.  I also sent a complaint email to the GFCO that supposedly certified this as being gluten-free.  That email is: Open Original Shared Link

 

On that note, has anyone noticed an adverse reaction to Country Life? It's hard for me to tell since I often feel crappy.  I take a lot of supplements and am looking to source from the safest companies possible.  What about these other brands, any experiences either way? - Twinlab, Vitacost, Now Foods, Organic India?  Any input is appreciated!

 

You take many supplements and often feel crappy?  I think you have answered your own question here.  Stop taking so many supplements and get your nutrition from real food or take supplements prescribed by a doctor.  These tend to be higher dosed and work better.  You can also have infusions, if your levels are that bad that you need to take lots of supplements. That will bypass your gut and solve a lot of problems.

 

I think you need to see a doctor to find out why, after so many years, you still feel crappy and don't seem to be healing all that well.  You need to do this so you won't be so angry because that is not helping you get better.  And, to answer your question about Country Life, I do know Celiac's who use them, are sensitive, and have no problems with them.

 

I really hope you can find the cause of your ill health but I think you need to include a doctor in the mix.  And yes, I know it can be very difficult to find a good one who listens.  It took me years to find a good doctor but they come in really handy when you hit a wall with your health.  Good luck!

[Zloduska]

 

 

 

Gemini-

 

You sure make a lot of assumptions, and they are all wrong.  I have been seeing a highly-qualified naturopathic doctor and have had plenty of tests done.  I believe my gut has mostly healed because my vitamin levels are now at least normal or high, and so I am absorbing nutrients.  You have no idea what supplements I am taking, what brands, or for what conditions, so you are not in a position to judge whether or not I should be taking them.  I have actually had positive results for other conditions from taking supplements and would be far worse off without them. I know they are a common culprit and 'stop taking supplements' is the usual advice, but I have 'tested' all of my long term supplements and do not react. While I have had improvements in many areas compared to pre-diagnosis, I am beginning to think that besides the inflammatory arthritis, I have another autoimmune disease thanks to the celiac.  My thyroid is fine, but test show inconclusive autoimmune activity and I'm worried I may have lupus.

 

My health problems mainly stem from other issues caused by having celiac disease, and I am very symptomatic from cross-contamination and oat-contamination that is so prevalent and impossible to avoid these days- symptoms that result even from supposedly certified gluten free products. Unfortunately I have developed other "allergies" (put that in quotes because some are expressed as true allergies and others as intolerances) to many other foods that in the past did not bother me.  The general consensus that I've seen from other celiacs and medical articles is that many of us do eventually develop other intolerances besides gluten- in fact it seems pretty common as many also avoid dairy/soy/corn/etc. 

 

If you really think that celiacs who cannot tolerate oats don't exist, and do not "believe" in cross-reactivity, then you are either willfully ignorant or foolishly mistaken.  How do you not understand that just because you do not experience a negative reaction or intolerance to a certain type of food, that the same cannot possibly be true for someone else? If you only have to avoid gluten and have no other dietary restrictions, then consider yourself lucky.  That is not the reality for many others.  Just because I can eat sweet corn on the cob without a reaction, I have enough sense to understand and sympathize with those who have to eliminate all corn from their diet.  I have tested gluten-free oats dozens of times because I did not want to be forced to avoid them, but each time I get the same horrible symptoms that take weeks to recover from.  This is a fact, that is my reality, and it cannot be denied.

 

I still stand by my complaints about Country Life Vitamins. I think it is highly irresponsible and disrespectful to market wheat germ products to celiacs specifically, and is indicative of a wider problem thanks to the popularity (and accompanying backlash) of the diet in the public realm of opinion.  Besides that, the company still refuses to answer my direct questions as to how they handle processing raw wheat germ into the oil in their supplements without cross-contaminating the gluten-free items.

 

The typical advice that I should eat a "whole foods diet" and that will magically cure everything does not work for me.  I *do* try to do that, but it has been literally impossible to source truly gluten and oat free basic foods like legumes, nuts, seeds and gluten-free grains that need to be a staple of my diet besides copious amounts of fruit and vegetables.  I do juice fasts on occasion and feel better, but one can live on only produce for so long.  Besides trying to avoid dairy which exacerbates my symptoms, I cannot eat meat and have reactions to many nuts, so I cannot do the typical paleo diet that seems to work well for others. 

 

Clearly you do not understand just how impossible it is to avoid oats and oat contamination in gluten-free labeled goods.  I've done the research. All major manufacturers in the U.S. such as Udi's, Bob's Red Mill, Amy's and the like run oats on the same production lines as their dedicated gluten-free products.  These same products are used in restaurants so that makes eating out more difficult. The same is true for grain & legume manufacturers who specialize in gluten-free and go as far as maintaining separate warehouses and facilities, but still process oats on the same lines as all gluten-free labeled products.  I have managed to find a few products here and there which seem to be safe, but since the overwhelming majority of gluten-free goods available in stores are oat-contaminated, it makes finding even basic items much more difficult and frustrating.

 

While some of your words may seem encouraging and friendly, which I normally try to be receptive to, when you tell me that my real life experiences are not valid because you don't believe in it, you come off as very smug and self-absorbed.  You cannot argue with the hives on my face when I eat certain foods, and you cannot deny the joint pain that bring me to tears after eating oats.  If you do that, you are no better than the media pundits that say that gluten-free diets are bogus and celiac disease is "baloney".  There is plenty of science to back up cross-reactivity.

 

Open Original Shared Link

[Zloduska]

Also, since you seem to imply that my oat intolerance is completely made up and all in my head (Gee, where have I heard that before?), here are some articles linking to experts and scientific studies that support my reality:

 

Open Original Shared Link

 

Excerpt: "To make things even more complicated, a small percentage of people with Open Original Shared Link and non-celiac Open Original Shared Link also react to avenin, the protein found in oats, which means they need to add oats to their list of prohibited grains.

It's not clear how many people with celiac disease also react to oats — some estimates are in the range of 10% to 15%, but research is ongoing. In addition, there's evidence that Open Original Shared Link."

 

Open Original Shared Link

 

Excerpt: "The consumption of cross-reactive foods as well as gluten-contaminated foods may be responsible for the continuing symptoms presented by a subgroup of patients with coeliac disease. The lack of response of some celiac disease patients may also be due to antibody cross-reactivity with non-gliadin foods. These should then be treated as gluten-like peptides and should also be excluded from the diet when the GFD seems to fail."

[bartfull]

Wow Zloduska, you DO seem very angry!

 

First of all, Gemini never said she didn't believe oats could be a problem. She said certified gluten-free oats are safe for MANY celiacs. She never said they were safe for ALL celiacs.

 

And as far as the cross-reactivity baloney, croos-reactivity in ALLERGIES is a real thing, but NOT in intolerances. The website you linked to is questionable at best - Open Original Shared Link

 

But this info from the University of Chicago Celiac Center is reliable. They are in the forefront of celiac research:

 

Home / FAQs / What’s with all the talk about certain types of food causing “cross-reactivity?”

AAA

 

What’s with all the talk about certain types of food causing “cross-reactivity?”

There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.

[Gemini]

Gemini-

 

You sure make a lot of assumptions, and they are all wrong.  I have been seeing a highly-qualified naturopathic doctor and have had plenty of tests done.  I believe my gut has mostly healed because my vitamin levels are now at least normal or high, and so I am absorbing nutrients.  You have no idea what supplements I am taking, what brands, or for what conditions, so you are not in a position to judge whether or not I should be taking them.  I have actually had positive results for other conditions from taking supplements and would be far worse off without them. I know they are a common culprit and 'stop taking supplements' is the usual advice, but I have 'tested' all of my long term supplements and do not react. While I have had improvements in many areas compared to pre-diagnosis, I am beginning to think that besides the inflammatory arthritis, I have another autoimmune disease thanks to the celiac.  My thyroid is fine, but test show inconclusive autoimmune activity and I'm worried I may have lupus.

 

I know you are angry but the need to correct erroneous information about what I said is needed here. 

 

I never said Celiac's do not react to oats because I do know a small minority do.  That's basic Celiac 101 information.  Many of us very sensitive ones do tolerate them very well and I am one of them. It is not hard at all to avoid oats in gluten-free products if you know how to read a label. The people on this forum who do not tolerate oats don't seem to have a problem so you should not either.  It's a simple matter of education and experience, over time. 

 

So, I was correct that you may have underlying issues from Celiac because guess what?  So do I and thousands of other people with celiac disease.  I have 4 autoimmune diseases in total and have been doing this for 10 years with the Celiac and many more years with the other 3 so my experience level is high and I never offer information that I am not sure of.  Again, it might be prudent for you to see a real doctor instead of a naturopath because you might actually get the help you need to feel better.  I offered no judgement of your taking supplements.  Many people end up taking too many, on the advice of "doctors" who make a lot of money selling them and they do nothing but make them sick for other reasons.  I am sure some help but many do not.

 

My health problems mainly stem from other issues caused by having celiac disease, and I am very symptomatic from cross-contamination and oat-contamination that is so prevalent and impossible to avoid these days- symptoms that result even from supposedly certified gluten free products. Unfortunately I have developed other "allergies" (put that in quotes because some are expressed as true allergies and others as intolerances) to many other foods that in the past did not bother me.  The general consensus that I've seen from other celiacs and medical articles is that many of us do eventually develop other intolerances besides gluten- in fact it seems pretty common as many also avoid dairy/soy/corn/etc. 

 

I will repeat this again in case you missed it the first time......you should not be cc'ing yourself continually after this long on the gluten-free diet after diagnosis. To continually insist that companies cc their product and they are not safe is completely untrue.  There are many great companies with good manufacturing practices who provide safe gluten-free products for Celiac Nation.  If this were not true, then no one would heal and move on. Your issues sound like you do have additional food intolerances/allergies so eating anything processed may not be right for you. You may also have a histamine intolerance, which can be common for us and this has been discussed at length here.  You might want to look into that as an option if you really want to find out what is going on.  You sometimes have to dig deep.

 

BTW.....I am also lactose intolerant but after healing, can tolerate small amounts of dairy.

 

If you really think that celiacs who cannot tolerate oats don't exist, and do not "believe" in cross-reactivity, then you are either willfully ignorant or foolishly mistaken.  How do you not understand that just because you do not experience a negative reaction or intolerance to a certain type of food, that the same cannot possibly be true for someone else? If you only have to avoid gluten and have no other dietary restrictions, then consider yourself lucky.  That is not the reality for many others.  Just because I can eat sweet corn on the cob without a reaction, I have enough sense to understand and sympathize with those who have to eliminate all corn from their diet.  I have tested gluten-free oats dozens of times because I did not want to be forced to avoid them, but each time I get the same horrible symptoms that take weeks to recover from.  This is a fact, that is my reality, and it cannot be denied.

 

I am not going to argue cross reactivity as that has been done enough here but it is not medically valid and has no basis in real science.  Read reputable data for information on that and you might see that this is true.

 

I still stand by my complaints about Country Life Vitamins. I think it is highly irresponsible and disrespectful to market wheat germ products to celiacs specifically, and is indicative of a wider problem thanks to the popularity (and accompanying backlash) of the diet in the public realm of opinion.  Besides that, the company still refuses to answer my direct questions as to how they handle processing raw wheat germ into the oil in their supplements without cross-contaminating the gluten-free items.

 

If you don't like the product, you don't have to buy it.  It has nothing to do with backlash or those who go gluten-free for reasons other than a real gluten problem. Why are you so upset over what other people eat?  None of that should matter to you...just concentrate on yourself and let the anger go. If you are not happy with a company response, then don't buy their product. 

 

The typical advice that I should eat a "whole foods diet" and that will magically cure everything does not work for me.  I *do* try to do that, but it has been literally impossible to source truly gluten and oat free basic foods like legumes, nuts, seeds and gluten-free grains that need to be a staple of my diet besides copious amounts of fruit and vegetables.  I do juice fasts on occasion and feel better, but one can live on only produce for so long.  Besides trying to avoid dairy which exacerbates my symptoms, I cannot eat meat and have reactions to many nuts, so I cannot do the typical paleo diet that seems to work well for others. 

 

I did not say that a whole foods diet will magically cure your problems but it's a good starting point. However, you seem to think that everything is contaminated and it most certainly is not....especially whole foods. I have never had a problem sourcing uncontaminated whole foods to eat so why are you?  There are blog sites out there who instill all kinds of fear in people about that and most of it is pure nonsense.  There are many safe options for us and all you have to do is ask for reputable gluten-free sources.

 

Clearly you do not understand just how impossible it is to avoid oats and oat contamination in gluten-free labeled goods.  I've done the research. All major manufacturers in the U.S. such as Udi's, Bob's Red Mill, Amy's and the like run oats on the same production lines as their dedicated gluten-free products.  These same products are used in restaurants so that makes eating out more difficult. The same is true for grain & legume manufacturers who specialize in gluten-free and go as far as maintaining separate warehouses and facilities, but still process oats on the same lines as all gluten-free labeled products.  I have managed to find a few products here and there which seem to be safe, but since the overwhelming majority of gluten-free goods available in stores are oat-contaminated, it makes finding even basic items much more difficult and frustrating.

 

I am not going to go into this anymore because your information is false. Companies that produce certified gluten-free products do not ALL run oats on the same lines, period.  There are a few that use oats in their products but that does not mean they are contaminated.  Many others do not use oats at all.  I do not know where you have gotten this information or maybe you misunderstood company reps but what you stated in this paragragh is not true to a high degree.  Sorry....but that's reality.

 

 

While some of your words may seem encouraging and friendly, which I normally try to be receptive to, when you tell me that my real life experiences are not valid because you don't believe in it, you come off as very smug and self-absorbed.  You cannot argue with the hives on my face when I eat certain foods, and you cannot deny the joint pain that bring me to tears after eating oats.  If you do that, you are no better than the media pundits that say that gluten-free diets are bogus and celiac disease is "baloney".  There is plenty of science to back up cross-reactivity.

 

Open Original Shared Link

 

 I realize I will not be able to help you because you are too angry right now at everything. I am sure not feeling well isn't helping either.  Smug and self absorbed I am not.  What I did do is learn the correct information on this disease and it seemed to do the trick because I manage 4 AI diseases quite well and am not sick all the time.  I have recovered to a point I never thought possible and I bet I am much older than you.  This is possible for anyone, if they get the right help.

 

FYI....hives sound very much like a histamine intolerance and there are some experts on that on this forum. That is a real condition, with medical tests that can diagnose it.  Cross reactivity is nonsense but you can believe what you want.  All I can say is you have been gluten-free a long time and still are having some very real problems so what you are doing isn't helping much, is it?

[Zloduska]

Um, it sure seemed pretty cut and dry to me.  I said that I react severely to oats, even gluten-certified free ones, and have had great difficulty in trying to avoid oat cross-contamination.   Gemini later said, "Cross reactivity is not based on real science, period.  It has no validity at all."  So she pretty much invalidated my life experience and said my pain isn't valid.  As a long time celiac, I'm sure many others would take offense to that as well, since we've heard it so often from doctors, family members, and others.

 

Seriously, if you propose that cross-reactivity in general is bogus, than how is it possible that experts have admitted and studies have shown that a minority of celiacs react adversely to the protein in oats because it is similar to wheat protein? That does not compute. I've tested the oat thing so many times in different ways, hoping against hope, but I always ended up with the same reaction, and now it is true for oat CC'd products as well.  I absolutely cross-react to oats much like gluten.  I don't get the severe nausea that comes with wheat exposure, but I do get prolonged arthritis flares, acne, fatigue, and other symptoms.

BTW, I do have cross-reactivity as far as true allergies, which sucks. The latex-fruit one I know for sure applies to me. It seems to have gotten temporarily better and then worse since my celiac disease diagnosis. It's very odd and I have not heard much from other celiacs on the topic, but my allergic symptoms (hives, wheezing, swelling) seems to increase after bad accidental exposures, but it's also random, and I can handle certain things as pasteurized or cooked, but not raw and whole.  As in, one time I will eat nuts or a certain fruit and be fine or have only mild symptoms, and then out of the blue the next time my face will swell up and it's hard to breathe.  It's extremely frustrating.  My chemical sensitivity in general seems to have gone up since a few very severe exposures in the last few years, as with other problems. I suspect these very severe 'gluten-ings' (where I was basically tricked into eating large amounts of gluten, I swear) had a chain reaction effect that caused my immune system to self-destruct and created all sorts of new issues. There was a stretch for a year where I could not eat eggs without severe gut pain, but now I can tolerate them again, for instance.  I may have histamine intolerance too, I dunno.

 

Well I actually do appreciate the contributions of the celiac community here and elsewhere-- you are right, I am really angry.  Sorry if I misplace that on anyone here, but it's true, I've been super p*ssed off from my experiences these last few years.  I don't know if I'm just that unlucky, but my experiences are not what others seem to describe. I'm sure the oat intolerance thing is a large part of that, because it really sucks to have all of these products shoved in your face every day that are advertised as safe, but I can't actually have (like gluten-free pizza that is not home-made.) 

 

Every time I hear someone on the diet (especially if they don't have celiac and are doing it for shallow reasons like weight loss) exclaim, "Eating gluten-free is so easy, teehee!" my blood boils.  I feel like all of the progress I made over the years from when I began this diet has been erased by both the popularity of the gluten-free diet as well as the tremendous backlash that has real world consequences.  I go online a lot to do research, read relevant celiac articles, get advice/info from other celiacs, and in doing so I inadvertently constantly feel under attack from the nonstop onslaught of criticism hurled at the gluten-free diet, all the misinformation, pundit idiot celebs saying our disease is total b.s., hundreds of articles from all sorts of media outlets/mags with provocative headlines exclaiming our diet is total b.s., idiots who troll every article I try to read and point out how much they love gluten, not being able to go to a comedy show which used to be one of my favorite activities without being the butt of a joke literally every single time for the last two years, not being taken seriously at restaurants, taking untold time to tediously emphasize the seriousness of my needs only to have them completely disregarded, having wait staff and managers lie to my face about their food prep details & gluten-free menus, having servers put something visibly with wheat in front of my face and then lie and say it's gluten-free when I can clearly see it's not, and then have previously trusted restaurants with separate kitchens intentionally or accidentally trick me into eating large portions of regular pasta or bread, which has ruined just about every birthday, holiday, anniversary or special event I can remember for the last few years, not to mention the nightmare that is having to travel and bring ALL of your own food with you, or the opposite, when you count on a certain gluten-free-friendly restaurant to be open or food to be available, only to discover it is not, so you starve or end up violently ill, still having to call manufacturers to find out the status for every new item I want to buy, then usually finding out it's not safe, or spending a fortune on certified gluten-free items that still make you sick so they are donated or thrown away... the list goes on and on.

 

If I actually felt healthy most of the time, I am sure I could take all of the above in stride.  But I don't feel healthy, I have a lot of other problems that get me down, and so coupled with the anxiety and depression that rears its head as symptoms, I find it very difficult to cope and not be angry all the time in general.  All of this is like a huge weight that has buried me.  I miss the simple times back when there were a handful of companies I got my gluten-free products from and did not have to question their safety, and when I ate out at restaurants, when I told the staff I had a serious 'allergy'/celiac it was taken seriously and I did not get sick 99% of the time.  Now that at least 30% of Americans say they are 'going gluten-free', no one takes it seriously anymore or has a clue, so I'm basically screwed and always on the defense.

[Gemini]

Zloduska......this is my last reply because you are too hard to communicate with, due to your anger.  It is blinding you from seeing the truth. 

 

You are comparing apples and oranges and don't seem to understand that a reaction to oats in some Celiac's is not due to cross reactivity.... which does not exist and is not medically valid. The protein is so similar to wheat that some Celiac's will react to it, but many do not.  Your life has not been invalidated by anyone except yourself.  You seem to be your own worst enemy right now and I am sure it is because you are still not well.  I hope that changes for you and you can find the cause of your grief, both mental and physical.  Your last paragraph spoke volumes about what is bothering you and if you took this post to a counselor to read, they may be able to get you past your anger and resentment.  That will be a big part of healing for you.  Trust me...been there, done that and anger will kill you faster than gluten. But please...go talk to someone!

[StephanieL]

As in, one time I will eat nuts or a certain fruit and be fine or have only mild symptoms, and then out of the blue the next time my face will swell up and it's hard to breathe.  It's extremely frustrating.  My chemical sensitivity in general seems to have gone up since a few very severe exposures in the last few years, as with other problems. I suspect these very severe 'gluten-ings' (where I was basically tricked into eating large amounts of gluten, I swear) had a chain reaction effect that caused my immune system to self-destruct and created all sorts of new issues. There was a stretch for a year where I could not eat eggs without severe gut pain, but now I can tolerate them again, for instance.  I may have histamine intolerance too, I dunno.

 

 

I hope you have Epi pens and I most certainly hope you don't keep playing life threatening games with foods like this.  If you are so careful with your gluten intake, perhaps taking as much care with allergens (with the knowledge that reactions can and often do progress from one to the other most times getting worse) would help you out too.  Perhaps you should check out MAST cell issues if you are up and down so frequently with your issues.  It may help explain some of that.

 

Good luck!

[Spring Bloom]

If wheat germ oil is highly refined it doesn’t appear to contain much in the way of residual protein- and remember that's where the GLUten in.. remember According to the Institute of Shortening and Edible Oils, the vast preponderance of edible oils consumed in the U.S. are highly refined and processed to the extent that allergenic proteins are not present in detectable amounts. Scientific studies indicate that refined oils are safe for the food-allergic population to consume.

I take many Country Life products and others that are GFCO certified.. if you have to depend on an agency to protect us and others.. and not depend on our own it's the BEST.. they are WAY more stringent than the FDA.. by 1/2 the amount they require for ppm (FDA is 20 and GFCO is 10) and they have to be made in a DEDICATED gluten-free facility.. (and Country Life is one).. so, it's safe..

[Gemini]

If wheat germ oil is highly refined it doesn’t appear to contain much in the way of residual protein- and remember that's where the GLUten in.. remember According to the Institute of Shortening and Edible Oils, the vast preponderance of edible oils consumed in the U.S. are highly refined and processed to the extent that allergenic proteins are not present in detectable amounts. Scientific studies indicate that refined oils are safe for the food-allergic population to consume.

I take many Country Life products and others that are GFCO certified.. if you have to depend on an agency to protect us and others.. and not depend on our own it's the BEST.. they are WAY more stringent than the FDA.. by 1/2 the amount they require for ppm (FDA is 20 and GFCO is 10) and they have to be made in a DEDICATED gluten-free facility.. (and Country Life is one).. so, it's safe..

You've done your homework! Good job!

There is just too much fear and misunderstanding in the Celiac community when all you have to do is read the science. If something is tested to contain negligible or no gluten content after processing, then there is no gluten, period. It will not make you sick from a gluten point of view.