I've been on the diet for about 8 months now. The last month it seems I have been having more reactions and I'm not sure why. I am still having the reactions right after I eat so maybe I'm getting it by accident and didn't realize it? I keep getting more strict with what I eat so I think I will end up cutting more processed foods out and see if that helps.
Gfgirlo1 said:
It also didn't see improvement of my ataxia until I'd been eating GF for about 6months. I'd say you should definitely stay on GF/DF diet.
YOUR THE BOSS not the Dr. Don't let him put u down or tell u what to give him. Stand up 4 yourself! Makes me mad, sorry. We have to advocate for ourselves especially with the 'brain fog'. The next time just speak up and simply tell him/her its cause u forget..that they r ur words. I'll be keeping track of ur posts since this is the same ataxia I THINK I have. No time to go for specialist 4 me right now but I WILL> Take care, the "FAZZ".
Fantasia said:
Thanks for all the input, that's awesome!! My Mom has been pushing me to go to Mayo and I do have insurance so I'm hoping they will have someone there to figure this out! I don't have symptoms all the time but I get them after eating. I actually had all my symptoms typed up for the doctor from my last visit so that I wouldnt forget anything but he said he didn't want to see that, he wanted me to tell him what I have. So I think he thought I just printed it from a website or something lol. I dont have my symptoms all the time and like I said, it happens within 30 mins of eating. Since going GF/DF they have gone down to once or twice a week if I get something by accident but before it was most everyday when I wasn't on the GF/DF diet. These are my symptoms and tell me what you all think: ( I actually did type these just from my own experience!)
- Dizzy and lightheaded
- Weakness in limbs
- Tingly feeling all over especially lips and feet
- Visions problems including double vision, eyes crossing, dilated, and glassy
- Inability to walk if weakness is severe, shuffling feet since I can't lift them and knees feel like they will buckle under me
- Fatigue
- Slurred speech
- Nausea
- Pain in the abdomen
- Muscular twitches, jerking, and vibrating/tingling feeling
- Brain fog and difficulty concentrating
- Seizure like gaze and not responding, if a bad reaction. Aware of surroundings and what people say but unable to respond at times.
Thanks again, I really do appreciate your comments and help so much!!!!
Yes, when he told me that I needed to see a neurologist and I told him I had seen one two years ago. He asked what did he say and I said he couldn't find anything. Then the GI doctor looked at me and said maybe because there is nothing to find. At that point, I went off and said don't you think that if I could stop this I would? If I could just pretend that this isn't happening and go on with my life then I would! He then said oh no there is definitely something going on. Basically seemed to retract what he had said previously. I am tired of doctors because they can't figure out something that there must not be anything there. Thanks for your encouragement!!
I did get confirmation today that I am now on the waiting list for Mayo Clinic. They are booked until March and aren't making any more appointments right now until they open another month. But at least they have all my information and I am hoping to get an appointment soon. :)
Marcy Fazzolare-Strom said:
YOUR THE BOSS not the Dr. Don't let him put u down or tell u what to give him. Stand up 4 yourself! Makes me mad, sorry. We have to advocate for ourselves especially with the 'brain fog'. The next time just speak up and simply tell him/her its cause u forget..that they r ur words. I'll be keeping track of ur posts since this is the same ataxia I THINK I have. No time to go for specialist 4 me right now but I WILL> Take care, the "FAZZ".
Fantasia said:
Thanks for all the input, that's awesome!! My Mom has been pushing me to go to Mayo and I do have insurance so I'm hoping they will have someone there to figure this out! I don't have symptoms all the time but I get them after eating. I actually had all my symptoms typed up for the doctor from my last visit so that I wouldnt forget anything but he said he didn't want to see that, he wanted me to tell him what I have. So I think he thought I just printed it from a website or something lol. I dont have my symptoms all the time and like I said, it happens within 30 mins of eating. Since going GF/DF they have gone down to once or twice a week if I get something by accident but before it was most everyday when I wasn't on the GF/DF diet. These are my symptoms and tell me what you all think: ( I actually did type these just from my own experience!)
- Dizzy and lightheaded
- Weakness in limbs
- Tingly feeling all over especially lips and feet
- Visions problems including double vision, eyes crossing, dilated, and glassy
- Inability to walk if weakness is severe, shuffling feet since I can't lift them and knees feel like they will buckle under me
- Fatigue
- Slurred speech
- Nausea
- Pain in the abdomen
- Muscular twitches, jerking, and vibrating/tingling feeling
- Brain fog and difficulty concentrating
- Seizure like gaze and not responding, if a bad reaction. Aware of surroundings and what people say but unable to respond at times.
Thanks again, I really do appreciate your comments and help so much!!!!
Keep us all up to date. Sorry there is such a need for more expertise in this field and quickly!
Fantasia said:
Yes, when he told me that I needed to see a neurologist and I told him I had seen one two years ago. He asked what did he say and I said he couldn't find anything. Then the GI doctor looked at me and said maybe because there is nothing to find. At that point, I went off and said don't you think that if I could stop this I would? If I could just pretend that this isn't happening and go on with my life then I would! He then said oh no there is definitely something going on. Basically seemed to retract what he had said previously. I am tired of doctors because they can't figure out something that there must not be anything there. Thanks for your encouragement!!
I did get confirmation today that I am now on the waiting list for Mayo Clinic. They are booked until March and aren't making any more appointments right now until they open another month. But at least they have all my information and I am hoping to get an appointment soon. :)
Marcy Fazzolare-Strom said:
YOUR THE BOSS not the Dr. Don't let him put u down or tell u what to give him. Stand up 4 yourself! Makes me mad, sorry. We have to advocate for ourselves especially with the 'brain fog'. The next time just speak up and simply tell him/her its cause u forget..that they r ur words. I'll be keeping track of ur posts since this is the same ataxia I THINK I have. No time to go for specialist 4 me right now but I WILL> Take care, the "FAZZ".
Fantasia said:
Thanks for all the input, that's awesome!! My Mom has been pushing me to go to Mayo and I do have insurance so I'm hoping they will have someone there to figure this out! I don't have symptoms all the time but I get them after eating. I actually had all my symptoms typed up for the doctor from my last visit so that I wouldnt forget anything but he said he didn't want to see that, he wanted me to tell him what I have. So I think he thought I just printed it from a website or something lol. I dont have my symptoms all the time and like I said, it happens within 30 mins of eating. Since going GF/DF they have gone down to once or twice a week if I get something by accident but before it was most everyday when I wasn't on the GF/DF diet. These are my symptoms and tell me what you all think: ( I actually did type these just from my own experience!)
- Dizzy and lightheaded
- Weakness in limbs
- Tingly feeling all over especially lips and feet
- Visions problems including double vision, eyes crossing, dilated, and glassy
- Inability to walk if weakness is severe, shuffling feet since I can't lift them and knees feel like they will buckle under me
- Fatigue
- Slurred speech
- Nausea
- Pain in the abdomen
- Muscular twitches, jerking, and vibrating/tingling feeling
- Brain fog and difficulty concentrating
- Seizure like gaze and not responding, if a bad reaction. Aware of surroundings and what people say but unable to respond at times.
Thanks again, I really do appreciate your comments and help so much!!!!
Thanks I will. I have a feeling that it will be maybe 6 months or more before I can get into a doctor at Mayo clinic since I am on a waiting list now. I guess I'm just on my own until then. Crazy that you have to wait so long and just deal with issues without getting any answers. I'm sure everyone on here can probably relate to that!
Marcy Fazzolare-Strom said:
Keep us all up to date. Sorry there is such a need for more expertise in this field and quickly!
Fantasia said:
Yes, when he told me that I needed to see a neurologist and I told him I had seen one two years ago. He asked what did he say and I said he couldn't find anything. Then the GI doctor looked at me and said maybe because there is nothing to find. At that point, I went off and said don't you think that if I could stop this I would? If I could just pretend that this isn't happening and go on with my life then I would! He then said oh no there is definitely something going on. Basically seemed to retract what he had said previously. I am tired of doctors because they can't figure out something that there must not be anything there. Thanks for your encouragement!!
I did get confirmation today that I am now on the waiting list for Mayo Clinic. They are booked until March and aren't making any more appointments right now until they open another month. But at least they have all my information and I am hoping to get an appointment soon. :)
Marcy Fazzolare-Strom said:
YOUR THE BOSS not the Dr. Don't let him put u down or tell u what to give him. Stand up 4 yourself! Makes me mad, sorry. We have to advocate for ourselves especially with the 'brain fog'. The next time just speak up and simply tell him/her its cause u forget..that they r ur words. I'll be keeping track of ur posts since this is the same ataxia I THINK I have. No time to go for specialist 4 me right now but I WILL> Take care, the "FAZZ".
Fantasia said:
Thanks for all the input, that's awesome!! My Mom has been pushing me to go to Mayo and I do have insurance so I'm hoping they will have someone there to figure this out! I don't have symptoms all the time but I get them after eating. I actually had all my symptoms typed up for the doctor from my last visit so that I wouldnt forget anything but he said he didn't want to see that, he wanted me to tell him what I have. So I think he thought I just printed it from a website or something lol. I dont have my symptoms all the time and like I said, it happens within 30 mins of eating. Since going GF/DF they have gone down to once or twice a week if I get something by accident but before it was most everyday when I wasn't on the GF/DF diet. These are my symptoms and tell me what you all think: ( I actually did type these just from my own experience!)
- Dizzy and lightheaded
- Weakness in limbs
- Tingly feeling all over especially lips and feet
- Visions problems including double vision, eyes crossing, dilated, and glassy
- Inability to walk if weakness is severe, shuffling feet since I can't lift them and knees feel like they will buckle under me
- Fatigue
- Slurred speech
- Nausea
- Pain in the abdomen
- Muscular twitches, jerking, and vibrating/tingling feeling
- Brain fog and difficulty concentrating
- Seizure like gaze and not responding, if a bad reaction. Aware of surroundings and what people say but unable to respond at times.
Thanks again, I really do appreciate your comments and help so much!!!!