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Some celiacs cannot tolerate oatmeal!
6 Replies
January - May 22

When you are on a gluten free (or celiac) diet, the cereal grains you must avoid are wheat, barley, and rye and all products made from them. They contain a protein called GLIADIN which causes an inflammation in the small intestine.

There is controversy about whether celiacs can tolerate other kinds of cereal grains like quinoa and amaranth (which are more ancient grains). I have had trouble with quinoa.

There is ongoing controversy about oatmeal also. Oatmeal is often contaminated with wheat at the processing factory. Since going strictly gluten free, I have several times tried "gluten free" oatmeal - and every time it makes me very sick. It's been six weeks now, and I am still recovering from eating some "gluten free" oatmeal cookies - it affects my brain, my energy level, my skin and my immunity - and I feel rotten. I called the company to complain, but they insist their oats are gluten free. So I did a little research and came across this from celiac disease:

Gluten-Free Oatmeal May Not Agree With You If You Have Celiac Disease

To make things even more complicated, a small percentage of people with celiac disease and gluten sensitivity 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 some types of oats are more toxic than others to people with celiac disease.

If you have celiac or gluten sensitivity, the only way for you to determine if you react to oatmeal is to try some (start with just a couple of spoonfuls) in its pure, gluten-free form — there is some anecdotal evidence that people who are more sensitive to gluten also react more frequently to oats, but there's no research to prove it (see more on sensitivity levels in my article How Much Gluten Can Make Me Sick?).

Therefore, if you're a diagnosed celiac, you should consult your physician first and then proceed very cautiously when adding gluten-free oatmeal to your diet. If your celiac disease symptoms return, stop eating the gluten-free oatmeal immediately."

So if your "gluten free" diet hasn't been working for you, this could be one reason. I'm going to post another reason next. And, btw, remember if you can't eat it - you probably don't want it on your skin either - Aveeno products are made with oatmeal. AVENIN -- Aveeno.


kvc33 - May 22

I read in a book that oats are often grown next to wheat and that can cause cross contamination as well. As well, with food allergies it is usually the proteins in the food that we react to.


January - May 22

kvc - I've seen this too. They keep saying oats are gluten free, yet people still have bad reactions, so they are trying to figure out why. Maybe a percentage of us are allergic to oats as well as other grains. And I agree, cross-contamination is a huge problem! In the fields AND in the factories.

For example, "gluten free" Quaker Rice Cakes made me sick. When I called to complain, they said, oh well, they're probably contaminated at the factory, not our problem, the government doesn't really have a legal definition for "gluten free." ARE YOU KIDDING ME? Gluten free is a big market, so a lot of people are rushing to put "gluten free" on products that really aren't. Most of them still have a small amount of gluten in them, as I found out! Depends on which product you're talking about.

This stuff makes me really sick!! I can't go to the store and buy something that SAYS "GLUTEN FREE" and rely on that fact???? 1/8 of a teaspoon of flour can make a celiac pretty darn sick, and it takes about 3 months to recover.

Sorry - I'm dealing with a very bad gluten (or oatmeal) reaction that has been going on for over 6 weeks, and I'm MAD. I hurt, I'm cranky, and I'm furious that I can't buy packaged food that is safe for me to eat! I can't even believe the labels. The only thing I can do is buy all fresh produce and cook it myself, but lately I don't have the energy for that.


Jocelyn - May 22

I agree, the main problem with Oats is cross contamination in the fields. Let's face it, the wind blows all over the place, so if the Oats are grown near wheat, then it will become contaminated. Also, many farmers use the same harvesting machines to harvest all grains. That is another problem. Oats have to stay out of a gluten free diet. As January can attest to!


kvc33 - May 23

I'm sorry you are so sensitive January and that you are having so much trouble. With my food allergies, I don't know what to think. Since I changed my diet my RLS is almost completely gone but it took seven months to see an improvement and 18 months to get where I am now. I am also allergic to meds and I believe I am still dealing with that as well, as I am still weaning off the clonazepam and I have to take migraine med that I am allergic to. With regard to symptoms after eating foods I'm not supposed to, I don't notice any reaction if it is just a bit. Sugar doesn't bother my legs. However, my energy and other symptoms have not improved since going on this diet and I wonder if it would if I were to do it 100%. I just can't do it. It's too inconvenient because my partner is not restricted so I end up eating what he puts on the table. I can't find a decent bread that has no sugar and so on. He finally got tested two weeks ago and we are waiting for the results. I would like to know how much of an improvement in exhaustion the average person with CFS sees with diet change. I also had a naturopath tell me that food allergies are not 'normal' and if a person has them it means there is some other underlying problem so you might want to see somebody and see if there is something they can do to help you. You can actually buy homeopathic pills (or something like that) that stop the allergic reaction from happening. Go to iherb dot com and look it up. Many people say it works.


January - May 23

kvc, I am SO glad to hear you are feeling better. I know it's a long haul, and at the start it seems so frustrating - but it takes a while for your body to clear out the toxic stuff. I've been reading a lot lately about how broken our food system is. The pink slime, the GMO stuff, Monsanto. When I call companies to complain about their food, I often get a knowledgeable rep who tells me new things I didn't know.

Food allergies are really complicated. I'm not sure I agree with the naturopath's ideas. Gluten sensitivity/celiac is linked to a certain genetic profile. From what I've been reading, the newer trend in science is to map out your individual genome - and then avoid foods that trigger the expression of whatever "bad" genes you have. That approach makes sense to me. So I'm not sure I agree with the idea that all food allergies are not "normal." But I will read up on it, as well as homeopathic remedies for food allergies. (I just found an interesting website!) Did the naturopath say what kinds of underlying problems cause food allergies? A lot of what I've read says that many diseases trace back to a root problem in the gut, i.e. food allergies or bad digestion; they're saying food allergies are one root cause. But this naturopath is saying there's another root cause BEHIND food allergies? Like what?

As for sugar, I don't think it bothers me. I need some to keep my energy level up. If you're getting migraines, it's possible you are still ingesting something you're allergic to. I've noticed that sometimes symptoms don't come up until days or even weeks later. I tend to get a cascade effect of one symptom after another for a long time. Diaries have helped me figure this out. It always happens the same way with exposure to certain foods.

And yes, I agree, trying to keep a strict diet is really, really hard. Luckily I have my own kitchen, and don't share it. But I have a hard time eating at anyone else's house, or going out to eat. People just don't understand that a rejection of their food due to a medical condition is not a rejection of THEM!


Jocelyn - May 23


You say you are weaning off of clonazepam. May I ask what millograms you are on? Are they not helping? Just curious because I do take them and they do help me, but then again, we are all so different.



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