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mott07

Is It Gluten-intolerance?

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I have both epilepsy & lupus. When I was first diagnosed with the latter illness 4 years ago, I had a blood test that was positive for celiac. A follow-up intestinal biopsy debunked the blood test & I was told not to worry about this. Recently, I changed lupus doctors & she recommended that I go on a gluten-free diet, suggesting that the consistency and severity of my fatigue might be related to an underlying gluten intolerance. It has been going well - there has definitely been a change in my energy level, but there is a complicating factor that is confusing matters and regarding which I need some advice:

My blood tests for my epilepsy drugs came back high so they reduced them a bit. Therefore, I am not sure if the diet is what is helping my energy or if it's the reduction in my neurological meds. This may seem like a silly question, but is there some way to test whether the diet is working? Like, if I have a beer or a slice of pizza, should it then cause stomach upset & fatigue? Or, will it inevitably do that because I haven't had any gluten for 6 weeks?

I know that ideally I shouldn't have changed my epilepsy meds while starting the gluten-free diet, but it was just at the beginning and I didn't want to be overmedicated neurologically for months.

I'd be grateful for any insight you might be able to give. Thanks.

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I have both epilepsy & lupus. When I was first diagnosed with the latter illness 4 years ago, I had a blood test that was positive for celiac. A follow-up intestinal biopsy debunked the blood test & I was told not to worry about this. Recently, I changed lupus doctors & she recommended that I go on a gluten-free diet, suggesting that the consistency and severity of my fatigue might be related to an underlying gluten intolerance. It has been going well - there has definitely been a change in my energy level, but there is a complicating factor that is confusing matters and regarding which I need some advice:

My blood tests for my epilepsy drugs came back high so they reduced them a bit. Therefore, I am not sure if the diet is what is helping my energy or if it's the reduction in my neurological meds. This may seem like a silly question, but is there some way to test whether the diet is working? Like, if I have a beer or a slice of pizza, should it then cause stomach upset & fatigue? Or, will it inevitably do that because I haven't had any gluten for 6 weeks?

I know that ideally I shouldn't have changed my epilepsy meds while starting the gluten-free diet, but it was just at the beginning and I didn't want to be overmedicated neurologically for months.

I'd be grateful for any insight you might be able to give. Thanks.

Tough one. The biggest problem is that symptoms from eating gluten, whether you're celiac or intolerant, can take three to four days to show up. By then, you have no way to be sure whether the symptoms are from the gluten or from something else. You could of course go the other route and read the package insert for your epilepsy drug (or look it up at rxlist.com where the same information is printed bigger) and see if fatigue is one of the side effects. If it isn't, then it ought to be the gluten-free diet that's helping your fatigue. Meanwhile, here's a list of symptoms for gluten intolerance: http://www.glutenfreedom.net/symptoms-of-g...intolerance.asp

In a nutshell, unless you're finding it very hard to stay gluten free, I think it's the better course just to do so. Talk it over with the new lupus doctor, of course. Good luck, and welcome to the board.

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Enterolab has a stool test that will test for gluten sensitivity. You can order it yourself (no doctor needed) online and the results will tell you if you truly have a problem with gluten. In my opinion, if the test would come back positive you will know it's the diet that is making you feel better. If it came back negative you will know that it was the med change. That is just my opinion of course.

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This link may also help:http://www.glutenfreedom.net/celiac-disease-testing.asp

The last statement is true, and is one that I'm experiencing. I have seen improvements going gluten free, and have no intentions on eating gluten again ( though since I was not professionaly diagnose, I always feel the urge to sneak gluten in my diet, and re-start the gluten free diet). I think my gluten intolerance lead to malnutrition and other health problems. I also may have other food intolerances/ allergies that will be ignored by doctors. More important I think I have a thyroid problem, I'm thinking if I get my thyroid examine and the doctor notice I do have a thyroid problem.... they then will diagnose me for my thyroid problem... and finally look more into my gluten intolerance for possibly of vitamine lacks, etc.....

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Were the blood tests for the drug levels done before or after you started eating gluten free? If they were done after you started the diet there is a possbility that your villi are healing and your body is now absorbing more of the drug. I am sure your doctor will continue to check those levels and adjust as needed.

Something else you may find, you may notice that the lupus and the epilepsy improve or go into remission on the diet. For some of us gluten is a brain toxin and can cause seizures, if you are one of those you may eventually find you are not seizing any longer. It is not unusual for those of us with other autoimmune issues to find that those improve or even go into remission on the diet. I can't say for sure that will be the case for you but I know for me it was a total shock how much improvement I had in things that I had been told I would just 'learn to live with' by my doctors.

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