evansmommie

I called the manufacturer of Provigil last July (2007, so it's been a while). They told me it has 54mg of gluten. So, my doctor wouldn't give it to me. I take ritalin and it does help some. I think you can also take adderall, which is a lot like ritalin. It took me a few days to adjust to the medicine, but I don't notice any side effects now.

I have narcolepsy and Celiac Disease. I've noticed that my fatigue gets a lot worse when I've been glutened. I've read several theories that narcolepsy and celiac are carried on the same gene and may somehow be related. In visiting narcolepsy message boards, I've read that many people with narcolepsy feel a lot better after going gluten-free. Not sure if they have been tested for celiac, but it seems a lot of people notice a difference on the diet, celiac or not. My narcolepsy has not gone away, but my fatigue has gotten better. I can fight being sleepy better than I could before going gluten-free. Is your husband on any type of medicine? If he is, he should know that when I checked last July, provigil contains gluten. I take ritalin because of that. I hope your husband is feeling better having a diagnosis! I think I took the news that I have narcolepsy harder than when I found out I have Celiac! Maybe he should get a blood test just to know for sure? Angie

Thanks everybody for your responses! I did talk to my husband about seeing a counselor to help him deal with his feelings. He said he doesn't want to do that, but will talk to our family doctor. She knows me really well, since I go see her ALL the time. I think she'll be able to point him in the right direction and he'll listen to what she has to say. I think dally099 hit the nail on the head. We can be having the BEST day, and he still finds things to be unhappy about. It drives me crazy because I'm generally a happy, easy-going person. He wasn't always this way, so I'm hoping our doctor can help with this. His mom is a major drama queen. As he gets older, I see him being like that more and more. I think he needs a big attitude adjustment. Thanks for all of your support guys!

Last night, my husband told me that he's deeply depressed. One of the main things that bothers him is the fact that my son and I have Celiac Disease. He said it upsets him that we're "sick." (I also recently found out that I have narcolepsy. It's very mild and, as long as I take my medicine, I'm fine.) He said it bothers him that we can't go to McDonald's or eat "regular" food. And it upsets him that sometimes I don't feel well. I've been gluten-free for over two years and haven't had much issue with the diet. It was hard at first, like it is for everyone. But, I just adjusted because that is what makes me healthy! I've even had several people tell me they're impressed at how well I handled the transition. But, like a lot of you guys, I felt awful and had endured a broken hip at age 28, due to bone mass loss thanks to mal-absorption. My three year old also had a fairly easy transition to becoming gluten-free. He started the diet in March of this year. So, how do I handle my husband? He still eats gluten. I haven't ever asked him to go gluten-free with us, so it's not that he's missing the food. And my son and I are healthier than we've ever been! I just don't understand it. Part of me thinks he just needs to knock it off. I know that isn't the nicest route, but at the same time, I feel like if I can handle it, he should definitely be able to. Especially since I don't care if he eats gluten or not. And I'm not very happy with being labeled as "sick" either. I know that some days I don't feel well, but I still work full-time, take care of the house, and take care of our son. How can I help my husband feel better about this? I almost feel guilty because I have health issues! Thanks!

Hello, We went through pretty much the same thing with our son that you are describing! I'll try to give you the short version of our story. I was diagnosed with Celiac two years ago, when my son was a little over a year old. He had always been small, but the ped thought he was just going to be a small person. After my diagnosis however, the ped decided to test for the genetic marker for Celiac. It came back positive, so we went to a ped. GI. She did the celiac serology panel, but it came back negative. Because of the family history, she decided to do a scope anyway. That test came back inconclusive (he did have eosinophilic esophagitis though). She decided to wait a bit and see how he'd do without any diet change. He didn't gain any weight for a year, but did get about an inch taller. So, this past spring, she did another scope. That test had the same results as the first one. She then ordered a small bowel follow-thru. After a lengthy discussion, she and the radiologist who read the SBFT results agreed that it looked like he had Celiac damage in his jejunum. I guess it can show up there, as well as in the duodenum. He has been gluten-free since March and is doing great. He has a lot more energy than he ever has and is growing well. After a year of no weight gain, he put on a pound in 4 months! As far as calories go, I don't think going gluten-free will hurt anything. There are a ton of gluten-free options out there to replace gluten-based bread, pasta, etc. The Kinnickinnick donuts are my son's absolute favorite thing. They also make really good bread. Also, have you tried adding Carnation Instant Breakfast to your daughter's milk? Our ped GI recommends that to help her patients gain weight. And it's gluten-free! Bell and Evan's makes good gluten-free chicken nuggets and Ians makes fish sticks. My son is a picky eater and he's taken to these things without missing a beat. Good Luck!