Looking For Answers: Miserable

[LindaJoy]

I do believe I've asked this years ago here, when I was looking for answers to what's wrong with me, but here I am again since it's not much better. Believe it or not, I was living on ground lamb and white potatoes for over a year as that seemed to be what I didn't react to, but recent circumstances, and very poor health, have led me to eating some other foods again, and I'm doing the weird reactions after eating.

Does anyone here with celiac do this after eating?

--feel tingling in feet that spreads to legs, like nerves being severely stimulated

--legs ache

--itching, especially in thighs

--feel nauseous

--feel like you'll pass out or have a seizure

--heartrate increases, as does blood pressure

--feel awful, like the flu

--start to shake

--want to cry

--feel panicky

--goose bumps, chill

--guts gassy and active

--sweaty, arm pits, back of head

--buzzing in ears

I know most of these symptoms are neurological. I have adrenal insufficiency and take hydrocortisone for it (these symptoms appeared long before this), Dysautonomia and Mast Cell Activation Disorder. Do any of you do the above with celiac? I've been tested many times and found to not have it. I just don't know anymore. Oh, these symptoms will start within minutes of eating, sometimes even while eating.

Thank you.

Lindajoy

[SGWhiskers]

If you were tested for celiac when you were avoiding most gluten (like on the lamb and potatoes diet), you would test negative. With that said, even people who test negative for celiac sometimes benifit from the gluten-free diet. A good friend of mine sees a rhumatologist who puts almost all of his autoimmune patients on the gluten-free diet to help ease some of their other symptoms. He actually puts them on a paleo diet because he has figured out that food is a a trigger for many of his patients even without celiac. Since you know your reactions are in part food related, it would probably be worth going strictly gluten-free and doing a gluten challenge after 3 months. You don't need an official medical diagnosis to know if gluten causes you problems.

You probably already know that celiac isn't the only autoimmune disease to cause symptoms like you describe and further investigation of other causes is warrented since you are testing negative for celiac. You would hate to miss another disease while thinking it was gluten intolerance. There is no reason it couldn't be one, the other, or both though.

With that said, about 1/2 of your symptoms are the same as mine when I get gluten and the reaction time can be as little as 20 minutes for me. Google gluten ataxia and you will find some info on the neuro side of celiac/gluten intolerance. Celiac is associated with many other autoimmune diseases. Scientists just isolated another roughly dozen genes which were not previously thought to trigger celiac. Medicine knows more about celiac than it did 50 years ago, but there is research and advancements every day. I'm hopeful people who are negative on celiac tests now, but have gluten related symptoms may just test positive on the next generation of tests that scientists develop.

I hope that helps

[Skylark]

Gluten intolerance can do a lot of things. It's an absolutely reasonable thing to try cutting it from your diet. I'd also suggest eliminating dairy and soy, as a lot of celiacs cross-react to them from leaky gut issues. That will still give you a lot more foods than lamb and potatoes and you can try adding them back if you end up feeling better.

[Gutsy Girl]

I do believe I've asked this years ago here, when I was looking for answers to what's wrong with me, but here I am again since it's not much better. Believe it or not, I was living on ground lamb and white potatoes for over a year as that seemed to be what I didn't react to, but recent circumstances, and very poor health, have led me to eating some other foods again, and I'm doing the weird reactions after eating.

Does anyone here with celiac do this after eating?

--feel tingling in feet that spreads to legs, like nerves being severely stimulated

--legs ache

--itching, especially in thighs

--feel nauseous

--feel like you'll pass out or have a seizure

--heartrate increases, as does blood pressure

--feel awful, like the flu

--start to shake

--want to cry

--feel panicky

--goose bumps, chill

--guts gassy and active

--sweaty, arm pits, back of head

--buzzing in ears

I know most of these symptoms are neurological. I have adrenal insufficiency and take hydrocortisone for it (these symptoms appeared long before this), Dysautonomia and Mast Cell Activation Disorder. Do any of you do the above with celiac? I've been tested many times and found to not have it. I just don't know anymore. Oh, these symptoms will start within minutes of eating, sometimes even while eating.

Thank you.

Lindajoy

Lindajoy,

I have gluten ataxia. I have all but one of the symptoms you've described and I've written here on this forum a bit about gluten ataxia. You can find some good info here. I bolded all of the symptoms in your list that I experience. I am very reactive to gluten in a neurological way and have some white spots on my MRI's. More about this in a second.

Many folks who have gluten ataxia tend to test negative to diagnosable Celiac Disease, but find that they have Gluten Sensitivity/Intolerance. This is what I've been reading in the medical journals and research I've picked up, anyhow. I myself can't promise I have Celiac, but I know that I have EITHER Celiac OR Gluten Sensitivity. My list of symptoms is...well......long. If I had not gone Gluten Free entirely in 2009, I believe I would have kicked the can either by choice (suicide) or involuntarily (I was really that sick).

About the white spots on MRI's for those who have gluten ataxia. I'm going to quote Ravenwoodglass to save time.

Ravenwoodglass:

"I found out that I have a new small white lesion in my brain which wasn't there last year."

Are you having any balance or movement issues? If you are you may have gluten ataxia. This lesion sounds like what doctors call a UBO or unidentified bright object. In some countries that is considered diagnostic of celiac that is attacking the brain. My neuro was clueless when a number of these were found on my MRI. I had severe ataxia which progressed to the point where I couldn't walk unaided before I finally got diagnosed. I have recovered to a great extent after I was finally diagnosed.

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