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.

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."

I switched to using all Alaffia products.  Their entire line is gluten-free, and I believe organic and fair-trade as well.  Since I began using their face wash and lotion, my skin has been a lot clearer, even after accidental gluten exposure, which typically results in a serious acne outbreak.  Their shea multipurpose cream with neem and other botanicals also helped a lot with a bout of DH I was dealing with.  I am super chemically sensitive and react to many things, but I tolerate their products very well and find them soothing to inflamed skin.  The other thing that helped my acne was taking Nordic Naturals purified fish oil supplement, since I was low in omega-3s.  Not sure if you take fish oil or not.

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

I don't know if I am just unlucky, or it has to due with oat-contamination or how sensitive  I am, but I am sure that after my huge Aldi's spree when they first debuted their gluten-free product line last May, I can say unequivocally that Aldi's gluten-free products make me sick, very sick.  It seems that I can maybe tolerate having one of their products once in a great while, but when I started having their various pastas/pizzas/etc a few days in a row, I started feeling awful and experiences weeks of moderate symptoms such as inflammatory arthritis. It seems to be the case that when I get 'glutened' from gluten-free products, the symptoms are not as severe, but more tenacious and pernicious in that the depression, anxiety, joint pain and other issues linger for a long time, and the higher volume of these gluten-free processed products that I eat, the worse and more prolonged the reaction is.

It surprises me that no one else has complained of adverse reactions to Aldi's.  I know that at least one of these new products contains oats, so it could be oat-contamination or a cumulative effect of regular cross contamination that is the culprit.  I have the same problem with anything from Trader's Joe's, can't touch any of their stuff, so it does not surprise me one bit if they are manufactured together.  How sad. The aldi's gluten-free boon was so convenient while it lasted.

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!