1 Year Gluten Free

[fakename]

I've had bouts of a week or two where I'm feeling glutenened. Oppositely I have times where I feel totally normal. But the great majority of the time I feel more "in-between" with an emphasis towards the normal end of the spectrum.

My question is, is this "abnormality" after this amount of time enough to warrant looking for a new diagnosis. Is it enough to justify testing for refractory celiac? Or could it be another food intolerance/allergy/etc? I don't know.

Thanks everyone -and happy new year!

[T.H.]

My question would be: what is your diet like? I wouldn't necessarily go looking for a new diagnosis until you've checked out your diet for any unintentional gluten, or go SUPER gluten free, in case you are more sensitive to gluten than the norm.

Do you eat a lot of gluten free products, like breads, crackers, cereals and such? Those can sometimes have too much gluten for some celiacs. Also, if you eat a lot of them, because they are actually 'really low gluten' and not 'zero gluten,' eat enough of them and you'll get too much gluten. Kinda like eating enough low calorie foods still makes you fat.

Have you ever done a food journal? That may help you track down a pattern in feeling glutened and feeling okay. May also help to see if you might have any other food issues.

Have you ever cut all processed foods out of your diet? Sometimes it can help you get rid of more gluten. Or check and see what the foods you eat test down to. Some gluten-free foods are 20ppm of gluten or less. Some are 10ppm or less. Some are 5ppm or less. Some companies don't even test and just don't add gluten on purpose, which means they can be contaminated to heck and back and never know it. Also, for the ppm? 4 slices of <5ppm gluten bread can be like eating 1 slice of <20ppm bread, so it can make a difference.

Have you ever cut all grains from your diet for a week or two? Many gluten-free grains are actually contaminated with gluten. Same goes for beans, nuts, and seeds. Sickest I ever got from gluten was off of plain nuts, actually!

Do you eat dairy? A number of celiacs are lactose intolerant, or allergic to dairy, so you could cut that and see how it goes.

What oil do you use? Some oils are run on lines with wheat germ oil. Some oils from seeds, nuts, and grains can be contaminated with gluten. Olive oils are generally a little safer.

If you've done all the above, and you are still having trouble, then I think finding something else that might be wrong would be a good idea, yeah. Or if your symptoms are vastly different when you get gluten vs. when you feel kind of 'eh.'

[fakename]

My question would be: what is your diet like? I wouldn't necessarily go looking for a new diagnosis until you've checked out your diet for any unintentional gluten, or go SUPER gluten free, in case you are more sensitive to gluten than the norm.

Do you eat a lot of gluten free products, like breads, crackers, cereals and such? Those can sometimes have too much gluten for some celiacs. Also, if you eat a lot of them, because they are actually 'really low gluten' and not 'zero gluten,' eat enough of them and you'll get too much gluten. Kinda like eating enough low calorie foods still makes you fat.

Have you ever done a food journal? That may help you track down a pattern in feeling glutened and feeling okay. May also help to see if you might have any other food issues.

Have you ever cut all processed foods out of your diet? Sometimes it can help you get rid of more gluten. Or check and see what the foods you eat test down to. Some gluten-free foods are 20ppm of gluten or less. Some are 10ppm or less. Some are 5ppm or less. Some companies don't even test and just don't add gluten on purpose, which means they can be contaminated to heck and back and never know it. Also, for the ppm? 4 slices of <5ppm gluten bread can be like eating 1 slice of <20ppm bread, so it can make a difference.

Have you ever cut all grains from your diet for a week or two? Many gluten-free grains are actually contaminated with gluten. Same goes for beans, nuts, and seeds. Sickest I ever got from gluten was off of plain nuts, actually!

Do you eat dairy? A number of celiacs are lactose intolerant, or allergic to dairy, so you could cut that and see how it goes.

What oil do you use? Some oils are run on lines with wheat germ oil. Some oils from seeds, nuts, and grains can be contaminated with gluten. Olive oils are generally a little safer.

If you've done all the above, and you are still having trouble, then I think finding something else that might be wrong would be a good idea, yeah. Or if your symptoms are vastly different when you get gluten vs. when you feel kind of 'eh.'

Hmmm, well when I'm feeling "eh" I usually feel like I've been glutened except to a very low degree. Like constipation w/occasional pain is how I feel immediately after I eat gluten. But when not, I feel a very slight pain (from incomplete evacuation?) in my lower left colon right after I'm done poohing (excuse the image). Is this close enough to my gluten feeling to justify a big change?

[lizard00]

I think it took me closer to two years to feel normal again. I felt much better, and I totally understand when you say you feel like you are on the normal end of the spectrum, but not there yet. It was about a year into it though that I figured out I can't handle soy, so don't write off another food. If you feel like something else is bothering you, pay close attention over the next couple of days and see if you can narrow something down.

Hope you figure it out soon!

[cahill]

I also was about a year into being gluten free when I realized soy,nightshades and corn were a problem

[dilettantesteph]

I agree with T.H. about cleaning up your diet. You don't necessarily have to make a big change though. You can do it in increments and see how far you have to go gradually. That's the way I did it. Now I am to almost no processed foods, but you might not have to go as far as I do to feel healthy.

You could start with eliminating processed foods from shared lines, then those from shared facilities, then those containing grains etc. See what you have to do to feel 100% most of the time. The encouragement you get from feeling better gives you the confidence to maintain or improve the diet. You might want to be more careful about eating out too. I don't do it at all.

[Skylark]

I also agree. You can't think about refractory celiac until you are eating only foods you know are 100% gluten-free like fruits, vegetables, rice, potatoes, home-cooked meats, and cheeses. I eat very few processed foods and I don't even bake with "gluten-free" baking mixes or flours much. I only eat out at chains that have a well-trained staff and a specific gluten-free menu like P.F. Chang's.