Gluten Challenge

[vegan lisa]

Quick History: I have had over a year of stomach pain. The GI issues (except for stomach pain) have mostly healed and they turned out to be a reaction to a medication, and were NOT food related. I've had a celiac blood panel done, which was negative (actually 0, not just below threshold of a positive test). My total IgA was normal. I had an EGD and the three biopsies that were taken have been reviewed by two doctors and show no signs of celiac.

I have mild reflux, which I am confident was caused by the medication I took for 7 months last year.

Both my regular doctor and the GI were sure I had celiac. I was sure too, as I have/had many of those vague secondary symptoms (early menopause, joint pain, brain fog) in addition to this sharp stomach pain.

Last fall, after all of the negative tests and after being "dismissed" by my first GI doctor, I tried going gluten free. I had been gluten free since late August or so, and many symptoms improved, notably the stomach pain and joint pain.

I decided that the life-long gluten free decision was a big one. Also, while I felt mostly better, I did not feel all better (maybe reflux causing problems still?) and at my primary doctors advice I went to see a fancy GI specialist at a University hospital in my state. Among other things, he suggested a gluten challenge. I started slowly reintroducing gluten last week and nothing dramatic happened at first, but slowly I'm noticing things:

*stomach pain is back, but is very mild. I would never seek a doctor for this pain that I can totally ignore.

*joint pain is back. Total bummer, as I hadn't really noticed it was gone until last night when it really hit. It always bothered me in the evening and I used to blame it on cheap shoes without enough cushioning.

*I've had a headache for 3 days.

*Brain fog is back. I can't think things through clearly. But then, maybe I'm distracted and overwhelmed by the idea of the gluten challenge and THAT's why I'm unfocused?

*I'm exhausted... my skin feels heavy, and it feels like it takes extra muscles to breath. BUT, I'm still making it to exercise, making it to work, so it's not like it's real muscle weakness or actual breathing issues. I'm also sleeping fairly normally.

I can explain away a lot of these symptoms individually, but taken altogether I am feeling pretty crabby.

I don't know when to call the doctor to discuss it, or if the doctor even would have anything to say at this point.

Do these sound like symptoms that would be enough for you to call off a challenge? Especially in light of my thoroughly negative tests? Is it worth giving it another week or two?

In addition, I've failed my apple challenge. Not only did it make my reflux worse, but I was a wreck -- I made about 4 huge mistakes at work in the 24 hours after. It's hard to imagine an apple could do that to a person, but it was my 3rd apple challenge with the same result. Go figure.

Thanks for your thoughts. Mine are clouded at the moment!! I really wish I just had a ticker tape receipt system that would give me print out what (if anything) is wrong with me!

Lisa

[eatmeat4good]

I'd say that was enough of a challenge to say I was gluten intolerant at least.

How long does the Dr. want you to do this?

I'd call and tell them what was happening to you.

If you aren't trying for more testing, then I'd say you figured out that gluten is a problem for you.

[mushroom]

Those for whom the neurologic/joint pain/brain fog symptoms are predominant seem to be those who end up testing negative for celiac disease. They do have gluten intolerance, but it isn't celiac disease, and celiac is all we can currently test for. So if you are suffering, and your work is suffering, with this gluten challenge I would suggest you talk to your doctor and call it off, because the chances are it will all be for nought anyway with your prior totally negative testing. Just MHO.

[anabananakins]

Those for whom the neurologic/joint pain/brain fog symptoms are predominant seem to be those who end up testing negative for celiac disease. They do have gluten intolerance, but it isn't celiac disease, and celiac is all we can currently test for. So if you are suffering, and your work is suffering, with this gluten challenge I would suggest you talk to your doctor and call it off, because the chances are it will all be for nought anyway with your prior totally negative testing. Just MHO.

I agree with Mushroom. This describes me, and I could not test positive to celiac. I did a 3 month gluten challenge and felt like death warmed up for all of it (plus I gained 15 pounds binging so many gluten-y products!) and my blood work didn't change a bit (thoroughly negative). Went gluten free and felt amazing within a few days. The balance problems and brain fog starting getting better within about 2 months. If I get glutened now I get GI symptoms, but if I'm consistently glutened (tiny bits but over a number of days, as happened on a trip last year) then the balance problems come back again.

I'd read a fair bit about the neurological symptoms and gluten and they scared me. I don't want to wait for the testing to catch up, when the cure is so easy. I usually just say that I can't eat gluten. If someone says 'oh, do you have celiac disease?" I tell them that I don't know if it would be described as that as that as under the current definitions, no, I don't. Then I briefly mention the research on neurological symptoms, inconclusive testing and my fantastic response to a gluten free diet. Maybe one day what I have will be confirmed as celiac, maybe it'll get a cool name of it's own, maybe this is as much as I'll ever know. I'm good with all three of those options :-)

[ravenwoodglass]

Then I briefly mention the research on neurological symptoms, inconclusive testing and my fantastic response to a gluten free diet. Maybe one day what I have will be confirmed as celiac, maybe it'll get a cool name of it's own, maybe this is as much as I'll ever know. I'm good with all three of those options :-)

It actually has a name, when we have the brain lesions and balance issues it is called 'Gluten ataxia'.

[EdwardL]

I agree with Mushroom. This describes me, and I could not test positive to celiac. I did a 3 month gluten challenge and felt like death warmed up for all of it (plus I gained 15 pounds binging so many gluten-y products!) and my blood work didn't change a bit (thoroughly negative). Went gluten free and felt amazing within a few days. The balance problems and brain fog starting getting better within about 2 months. If I get glutened now I get GI symptoms, but if I'm consistently glutened (tiny bits but over a number of days, as happened on a trip last year) then the balance problems come back again.

I'd read a fair bit about the neurological symptoms and gluten and they scared me. I don't want to wait for the testing to catch up, when the cure is so easy. I usually just say that I can't eat gluten. If someone says 'oh, do you have celiac disease?" I tell them that I don't know if it would be described as that as that as under the current definitions, no, I don't. Then I briefly mention the research on neurological symptoms, inconclusive testing and my fantastic response to a gluten free diet. Maybe one day what I have will be confirmed as celiac, maybe it'll get a cool name of it's own, maybe this is as much as I'll ever know. I'm good with all three of those options :-)

The neurological damage possibilities should scare you. My wife (mid 60's)was diagonsed with frontal lobe dementia. She had migraine headaches most of her life until she quit eating gluten. Problems did not completely improve until she quit eating casein (dairy)as well. Casein has molecular structure similar gliadin, and both can cause nerve damage. We haven't eaten soy for years (both had negative reactions). It has anti-thyroid compounds (blocks iodine), and should certainly not be eaten by anyone with thyroid problems. Fermented soy is ok, like tempeh or miso. Much better to eat extra virgin coconut oil which helps the thyroid.

[anabananakins]

It actually has a name, when we have the brain lesions and balance issues it is called 'Gluten ataxia'.

D'oh, thank you! I knew that (or rather, I have learned and forgotten that a number of times!)

The neurological damage possibilities should scare you. My wife (mid 60's)was diagonsed with frontal lobe dementia. She had migraine headaches most of her life until she quit eating gluten. Problems did not completely improve until she quit eating casein (dairy)as well. Casein has molecular structure similar gliadin, and both can cause nerve damage. We haven't eaten soy for years (both had negative reactions). It has anti-thyroid compounds (blocks iodine), and should certainly not be eaten by anyone with thyroid problems. Fermented soy is ok, like tempeh or miso. Much better to eat extra virgin coconut oil which helps the thyroid.

Eek. I am very sorry for you and your wife, I hope she is doing ok. I am still eating dairy (though nearly only lactose free milk; I do eat a little cheese and I can tolerate small amounts of yoghurt) but I believe that the symptoms from casein aren't like those when the problem is just lactose? (i.e., I just get tummy ache if I eat too much yoghurt, or icecream or drink regular milk) I still eat soy too, though I don't seek it out.