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Jane Anderson

Is It A Real Reaction To Tiny Amounts of Gluten? Or Is It All In Your Head?

By April 18, 2011

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I got an email the other day from a reader who questioned whether some of us really are "super-sensitive" and react to trace gluten in some foods, even those foods labeled or certified gluten-free. Many or most of our perceived reactions could be psychosomatic, this writer said.

The reader also questioned whether I was perhaps doing a disservice to the celiac/gluten intolerant community by suggesting that some of us can't tolerate 20 parts per million or even 10 parts per million of gluten. Options are limited enough as it is, the argument went, and I shouldn't make it more difficult for people.

I'm sorry, but I don't agree that providing information on PPMs below 20ppm (the current proposed FDA standard) or even 10ppm (the level to which many manufacturers are testing) is misleading. I hear all the time from readers who are grateful to me for pointing out that their "gluten-free" foods may still contain some gluten and may be causing them symptoms. In many cases, they eliminate those products (usually grain products, but not always) and finally feel better.

Accusing those of us with very real symptoms from those minute amounts of gluten of being "psychosomatic" doesn't help at all. But unfortunately, the "it's all in your head" theme ("If I don't react to it, then you must be imagining your own reaction") seems fairly prevalent in some parts of the celiac/gluten intolerant world.

Of course, I get my back up when people say things like this. I didn't expect to have problems with so many "gluten-free"-labeled foods, but I had them anyway, and found that I needed to remove most of them in order to finally heal.

Of course, we all know it's quite possible to psych yourself into gut symptoms -- ever hear the term "nervous stomach"? But many of us who react to gluten have a series of symptoms that occurs every time. In my case, those symptoms include dermatitis herpetiformis -- which I'd be surprised if I could psych myself into (it's possible, but I'd have to see a study on it to believe it).

I also don't think you're psyching yourself into symptoms if you're not expecting them in the first place. Yes, some symptoms could represent another problem (the stomach flu, something you ate, etc. etc.). But getting the exact same constellation of symptoms time and time again when you eat a particular food tends to indicate gluten exposure -- especially if it's the identical set of symptoms you get with known gluten exposure.

When I first was diagnosed and went gluten-free, I happily ate all sorts of foods, especially gluten-free grain products. Because of the mantra that "gluten-free means 100% safe," it took me several years to figure out why I wasn't healing and still felt terrible -- after all, I was eating "gluten-free," right?

Of course, labeling has come a long way since then (I started in late 2003), but the assumption has stayed the same: if it's labeled gluten-free, or there's no gluten in the ingredients, it's got to be safe. If you react, you're reacting to something else. But that's just not true: gluten-free doesn't mean "absolutely no gluten," and foods that appear gluten-free by ingredients list still can contain some gluten from facility cross contamination.

The word from many of the leaders in the celiac community is that "most" can tolerate 20ppm in foods eaten every day. But researchers also acknowledge that sensitivity represents a spectrum, and some of us (sadly for us!) are found on the very sensitive end of that spectrum.

Personally, I think it's likely that many or most of us can tolerate 10ppm of gluten in the foods we eat, as the studies seem to indicate. However, there's a significant minority who cannot eat even those foods without symptoms (whether or not we get actual physical damage from them). Could these very low levels of gluten in "gluten-free" foods be the reason why so many celiacs don't heal, even five years after adopting the gluten-free diet? Perhaps, but plenty more research is needed.

In the meantime, rather than telling those of us who are super-sensitive that "it's all in your head" (didn't we get enough of that from our doctors as we looked for a diagnosis?), wouldn't it be better for the celiac community to embrace the concept that we're all different, and some of us may react to far lower levels of gluten than others? That's certainly a vision I can embrace.

Comments
April 19, 2011 at 1:21 am
(1) Shauna says:

Thank you for this. It’s hard enough getting diagnosed with this disease in the first place; we don’t need to be doubting another celiac’s experience simply because it doesn’t match our own.

I’m fine if someone is skeptical and asks questions, but usually, it seems to be assumed that people who claim to be sensitive started out ‘hysterical’ and blamed gluten for everything. When in reality, most people I know in this situation struggled and looked at a lot of other issues before they realized that their gluten free food was the problem.

I am a really sensitive celiac, too, and my daughter has turned out to be one as well. That was what finally clued us in – both my daughter and I, who don’t have the same food issues outside of Celiac Disease, and have quite different reactions to gluten besides, would both have our gluten reaction to the gluten free foods we were trying to eat.

However, it took over a year, unable to get better, before we figured it out. I wish there were posts like yours up when we first started looking for help. It might have saved us months of ill health!

April 19, 2011 at 2:03 am
(2) Nikki says:

I couldn’t have said it better myself. :)

Thank you.

April 19, 2011 at 9:05 am
(3) Jane Anderson says:

@Shauna — I have a daughter too, and her reactions helped to clue me in at the beginning of this journey. Perhaps *I* might be able to conjure symptoms from nothing, but I don’t think my then-five-year-old was doing so. Since we both reacted to the same foods, it was clear something was going on.

I wish someone had told me about low levels of gluten in the beginning, too … which is why I’m writing this now.

@Nikki — Thank you! I think this is a really important issue for us.

Jane Anderson, About.com Guide to Celiac Disease

April 19, 2011 at 9:26 pm
(4) NoGlutenEver says:

If you are a member of this significant minority, there’s plenty of support over at the glutenzap forum.

May 12, 2011 at 10:01 pm
(5) Lisa says:

I just wanted to say thank-you for this article! After being gluten free for 6 months back in 2009, I still couldn’t figure out why I wasn’t getting any better. I talked to my GI doctor and a dietitian who looked at my food journals, but I was still sick. My dietitian reassured me that I was eating gluten free, but maybe I had another intolerance. I did elimination diets and then I thought maybe I have another disease. It wasn’t until after I read that some celiacs are more sensitive than others and I had to give up a lot of the processed gluten free foods did I start to get better. Just reading this article makes me feel like I’m not going crazy! :) And hopefully it will help others from making the same mistake I did. It took me a good year to feel 100% when it probably shouldn’t have took that long.
Thanks!

August 12, 2011 at 10:22 pm
(6) Laura says:

The way to figure out what’s causing your food problems is to do a elimination diet and food challenges. The food challenges should be with a pure, unprocessed food. That way you aren’t testing a lot of ingredients at once, or running a risk of contamination with gluten.
Many of the people who think they’re getting sick from super-tiny amounts of gluten, actually have sensitivities to other foods. Once you know you’re sensitive to gluten, you tend to interpret all reactions as being from gluten – who wants to have other food sensitivities too! But other foods can cause reactions that are similar to a gluten reaction.
Any food that’s labelled gluten-free is suspect, because it’s a processed food and processed foods usually have other allergens like corn and soy. So if you eliminate “gluten-free” processed foods and feel better, that doesn’t mean there was still gluten in the “gluten-free” food.
Many celiacs ARE very sensitive to gluten. I’d likely get sick from 20 ppm of gluten. I eat almost no processed food, and I’ve gotten sick from cross-contamination only once in 8 years gluten-free.

October 7, 2011 at 7:01 am
(7) Clare says:

Thank you for this article, it’s really good that someone is out there saying this. I’ve only recently been diagnosed, and everytime I think I’ve got it right, stumble on something that I react to – I appear to be of the very sensitive category. My main stumble so far was with coca-cola, which is supposedly ‘gluten-free’ – this could not have been psychosomatic, as I thought it was okay! Until shortly afterwards :( I then looked up various forums and found out that very many people have an issue with Coke because of the caramel colouring. I won’t be drinking that again! So it’s really not psychosomatic, who would want these symptoms, unless they have some other psychological problems? I think most of us stumble when we ingest something accidentally. But we keep on trying! Thanks again for the article :)

May 2, 2012 at 12:05 pm
(8) Jane says:

I am so grateful to have read this. I am recently diagnosed as celiac and have not yet consumed any “gluten-free” food. Though, I did just buy a few products yesterday. I plan to be extremely careful now and I may not eat them at all.

Whew. I’m trying not to be overwhelmed by all of this.

June 24, 2012 at 12:00 am
(9) Shauna says:

@ Laura – Id agree with your first statement re: food challenges. However, most super-sensitives do elimination diets and food challenges.

I think there is some misunderstanding of the process due to how we super-sensitives tend talk about our personal discovery stories. While we frequently mention one instance, an ‘a-ha’ moment, where we ‘figured out’ super-sensitivity (which frequently involves a processed food), that doesn’t typically mean we had that moment and then stopped looking for answers.

We’ve been down that road too often before, where we learned information and investigated it only to run into a dead end. We KNOW there are dozens and dozens of problems that can cause people to react, because we’ve usually checked out some of them already.

So when we think we’ve figured it out, we use that information to focus our testing, and then, we test. An elimination diet follows, food trials, notes on symptoms, medical tests on other problems to see if they have resolved, whatever we know will test our theory to see if we COULD have super-sensitivity or if we should continue to look for answers elsewhere. We consider that one ‘a-ha’ incident simply as the trigger that enabled us to find the answers, not as the answer itself.

July 31, 2013 at 4:05 am
(10) naomia says:

My sister is intolerant. Every year we have a gathering of friends some who are celiac. We make sure that there is no cross contamination between the GF food and whatever else is brought. However there is a female in our group who has confessed to many that she believes that this disorder is all in the head. This year she decided to prove this theory. She baked some soda bread and claimed it was GF. Unbeknownst to the GF friends they all ate it believing it safe as they would never do such a devious thing. Not but 5 minutes into the feast all of our GF friends started having symptoms. Two of which ended up in the hospital. She then confessed to her dishonesty. But for her stubbornness she still believes that they all knew that she had done half rice four and half barley flour. She is still welcome to all of our gathering but is no longer trusted in what she brings.

September 4, 2013 at 10:11 pm
(11) DeWayne says:

I find the sensitivity of my decease totally unbelievable myself! I have continually been hit by my wife’s cooking of gluten free meals. We have finally traced my hits to a few pans that she also uses to cook breads or dumplings. They are totally clean and even if I hand scrub them I will still get hit. Finally bought a new set of pots and pans.
Cross contamination is always a problem and a concern. I have been hit by salads where the cook also handles breads.

September 22, 2013 at 9:15 pm
(12) Natalie says:

I am 12 and currently suffering from gluten I accidentally ate in Kellogs cornflakes. People tell me my allergy is in my head all the time . . . but how do you explain the fact that I am sitting here with a 100.3 fever?!?! I am also congested and have the chills, nausea, a migraine, and mucus dripping down the back of my throat. I haven’t slept since the night before last night due to being so uncomfortable, and I feel as if I am about to pass out. Frankly, I am offended that this ignorant person would actually accuse me or anyone of their gluten allergy being psychological!

December 9, 2013 at 11:17 am
(13) Msk says:

Well, my problem is that I’m not super sensitive but my family has the gene that suggests that I could have complications in the future. My dad and his two brothers have intolerances and different diseases as a result. My dad has sarcoidosis and one of his brothers has granuloma something or other. I’ve told my friends that I need to be gluten free but because they know that my body doesn’t react negatively to gluten they don’t believe me. I think the only way to prove it to them is to be tested and share the results.

December 16, 2013 at 12:44 pm
(14) Jessica says:

What a good article. My son is 5 and he has severe sensitivities to gluten. If he eats a small amount of gluten he has a reaction. Usually smaller amounts result in the bones of his feet hurting. For a while he was complaining of this very thing happening and we couldn’t figure out what he was eating. Then we noticed the chocolate hazelnut spread changed their labeling and added “may contain traces of wheat”. We excluded that from his diet and the pains in his feet were gone two days later. He is five, he cannot possibly be having “in his head” pains. There are very real reactions people have!

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