Neuro

[jacqui]

Hi,

I am approaching my 2 year mark of debilitating neuro symptoms that no neuro will say it is related to celiac disease. I have been to 5 (2 of them at UCSF and one at Stanford!!) and all my husband and I can decipher is that they think I have serious depression (one actually said PTSD - I am a normal person Mom, wife and was working in a hospital - no craziness to the point of PTSD!!!) or they think I am nuts, which I have heard or read about from many celiacs.

1. Please tell me someone has had success with a neurologist. At this point I will go anywhere.

2. Also if anyone knows a Child Psychologist in Northern California near Sac and Roseville? My 9 y/o daughter was just told by a Psychol. she has ADHD but we were sending her for anxiety per the school psychol. recommendation b/c she has had way too much stress in her life for a 9 year old and per the Conner's scale anxiety was higher than ADHD.

Thank you,

Jacqui and family

[Nancym]

The only one I know of posts on Open Original Shared Link

[CarlaB]

Have you been gluten-free for two years? If so, is it possible that your neuro symptoms are due to another condition you have along with the celiac? I would think that after two years you would be seeing improvement.

Sorry, I'm no help for your actual question, but I hope you get answers soon.

[kevieb]

i have a tendency to agree with carla---if you are sure you are totally gluten free-----your symptoms could be caused by something else. what symtpoms are you having? maybe if you post them they will ring a bell with someone. i always figure that the more people you talk to, the more info you can glean.

my son has ADHD and he is bipolar ll. he gets alot of anxiety problems. the psych has told him that mixed states(from the bipolar condition) can cause the anxiety symptoms. just what you needed, one more thing to worry as a possibility---sorry.

[jacqui]

Have you been gluten-free for two years? If so, is it possible that your neuro symptoms are due to another condition you have along with the celiac? I would think that after two years you would be seeing improvement.

Sorry, I'm no help for your actual question, but I hope you get answers soon.

Hey Carla how are ya'?

I am going to get tested for Lyme's disease. The lab order is in the computer I just have to get there and do it. My do is away til Aug. something so one of his colleagues ordered it no questions asked. Well, Debra my doc's asst. probably filled him in she knows me quite well.

We are all thinking lymes, but I have heard of celiacs that do not improve b/c diagnosed too late or it can take up to 5 years!!!

Hope you are doing well. I changed my pic to my bestfriend and my girls in their Irish dace outfits.

Take care,

Jacqui

[jacqui]

i have a tendency to agree with carla---if you are sure you are totally gluten free-----your symptoms could be caused by something else. what symtpoms are you having? maybe if you post them they will ring a bell with someone. i always figure that the more people you talk to, the more info you can glean.

my son has ADHD and he is bipolar ll. he gets alot of anxiety problems. the psych has told him that mixed states(from the bipolar condition) can cause the anxiety symptoms. just what you needed, one more thing to worry as a possibility---sorry.

Thanks!! My neighbors son has the same as your son. He is homeschooled now b/c he can't cope with the social aspect of school.

Sorry to hear about your son.

My symptoms are/were:

1. Numbness tingling of extremities. Left worst than right.

* I also used to get numbness starting in my right upper and lower lips that would slowly work its way to gums, tongue and down my right arm, which freaked me b/c this is common in woman having stroke. I may have had yeast overgrowth, so my allergist experimented and put me on is it doxycycline? (the one that you get prescribed and only have to take once for yeast infections) for 3 days and then once a week for about 8 weeks and I only had one very minimal event-just my lips and went away quickly. The other ones lasted up to 1+ hours.

2. When I lift my feet to my knee in sitting position in shower they go blue (told by PCP over the phone probable Reynaqud's)

3. Poor concentration

4. Poor memory

5. mix up words frequently and sayings

6. mispelling of words i.e. use buy instead of bye or by

7. lesion on brain - had 2 neuro's and a med student looking at my T3 MRI saying between each other, "You see her white matter?" "Yeah I thought it looked strange too." Could that be doing all this" "Maybe. Hmmm?!" " Or it could just distortion from the T3..." Distortion!! How much did I have to pay for a supposed better (double strength) MRI and it made a worse view??!!!

8. possible seizures - 2x I swore we had an earthquake but I live in Antelope ouside of Sac, CA and there are no/were no quakes.

9. constant migranes - had for 2-3 months 24/7. Nothing eased them until gluten-free now I think they are tension headaches when I do get them.

10. insomnia - I slept 20+ hours, kid you not from, Sept. 2005 to March 2006. My husband would carry me to the kitchen to couch to bed again. I would sit on the couch trying to hang out with my 3 kids and I would just go instantly to sleep. I am still feeling tired everyday but I do not nap anymore.

11. constant dryness of eyes

12. Walk like a drunk but when Gluten ataxia mentioned to doc's it gets ignored by every one of them. I have seen 5 neuro's 3 at top universities. One known for its neuro dept. I saw the top guy their who then referred me to a movement disorder specialist who said, "You'll get better." I said, " How?" He says, "Well, the glutenfree diet has improved some symptoms, so I would stay gluten-free." Me in my head, "Do you blaeppity think!!! I have celiac disease you bleepin bleepty bleep bleep!!!!!!!!!!!"

13. Weight gain of about 25 pounds starting ~July 2004 and was told my age, mind you I was 36 at the time and on thyroid meds for Hashimoto's. No I do not think my age. I actually dieted and gained weight. Once I joined Weight watchers and basically cut out all gluten not realizing I had Celiac at the time. I lost weight quickly and hit my goal weight of 118lbs in less than 4-5 months. I stayed there for a few months and then this Jan. I started eating beef nachos and guac plus several Haagaen Dazs bars and dove chocolates (all are gluten-free - our whole house is b/c my daughter has it and I swear my oldest "ADHD"daughter who has the genes but tests neg. even biopsy)every day and went down to 103!! I am back to probably 116 and still eating mostly above diet but cut back on ice cream.

Of course I was was told depression and up until the past few months my husband and I were adament that I was not depressed. Now not being able to drive or have control to do what I want when I want has hit me and for the first time in my life I can say I am depressed. I said to the last neuro that if anger is a part of depression than I am absolutely depressed, since no one has been able to give me a diagnosis other than PTSD! If anything I have PTSD from my experience with all the "professionals" I have seen in the past 18 months!!!! It will be 2 years September 5th!

My Celiac doc told me that she has had patients with brain fog for 2 years and come in one day thrilled b/c the fog cleared. So as far as I can tell and have read, everybody improves at their own pace. Someone from I think hastypasty.com has improved greatly neuro wise, but it took 5 years and she still has symptoms/permanent damage. {Can't remember...}

Anyway that is I think all of it...

Thank you for the advice. Hopefully someone sees my reply and has more advice for me too.

Take care,

Jacqui

[confused]

I just wanted to say im sorry you are going threw all of this. I have a hard time thinking you have ptsd to. Why wont they figure out what the white matter is, do u tell them its probally gluten ataxia, or are they just wanting you to stress out over it so you keep coming back. I think so many drs do that they dont want to tell you anything cause they want you to keep coming back and makig their wallets fatter.

I just wanted to say i miss up the words all the time like bye and buy, i have done that for years, it has seemed to get better going gluten free but i stil catch myself from time to time.

Are you only gluten free, i cant remember?

paula

[NicoleAJ]

Jacqui,

I'm sorry you're going through this. None of the neurologists have mentioned MS? I had numbness and tingling in my extremities and my tongue, but they went away after I started taking B12 injections for my B12 deficiency.

I've been tested for MS several times now because of the combo of B12 deficiency, peripheral neuropathy, and trigeminal neuralgia, but each time that the MRIs, optical nerve tests, and nerve conduction tests come back normal, my neurologist just attributes these things to some sort of inflammatory process associated with my celiac disease and says that I should consider myself lucky that it isn't any worse than that. And frankly I do--I'm managing the trigeminal neuralgia with Neurontin, which has actually been great for my gut. And the B12 shots aren't bad at all.

[tom]

Jacqui,

My Gluten Ataxia went away in a month or so upon going 100% gluten-free.

It did NOT go away while 99% gluten-free, btw.

I had many other symptoms, both mental & physical, disappear when I finally also went soy-free last year. Before that - tho gluten-free for 2yrs - I often couldn't even hold a simple conversation.

Are you dairy-free and soy-free?

If not, I demand highly suggest doing so for at least a 2week test.

I'd done several soy-free trials before, for a week or less and didn't notice much. Last year, on day12, I KNEW I had an answer. My brain was suddenly functioning right again!!

I say give it a shot - what have you got to lose?

[Cinnamon]

I have an 11-year-old who had many of the same neurological symptoms, and the neurologist was useless, as well as all the other doctors we saw. One doctor said that the debilitating brain fog he had was indicative of schizophrenia. This is a friendly, normal kid with both feet firmly planted in reality. I remember the day the neurologist called to tell me the results of his EEG and blood tests, (none for celiac). They said he was fine, perfectly normal, and I didn't know whether to cry or scream. Yes, it's perfectly normal to have a young boy staggering at times, seizure-like episodes weekly, horrible brain fog, slurred speech, visual disturbances, etc, etc. Aaaargghhh! So, armed with a computer mouse and my Biology 101 from 20 years ago, I had to figure it out on my own with the help of God and the internet. Going gluten free caused some symptoms to disappear completely like the seizure type episodes. He hasn't had one since going gluten free. The staggering stopped as well. Other symptoms are improving slowly over time. Others are still with him. I can see it takes time to heal from this.

One thing that really helped a lot is taking serrapeptidase enzymes. If taken on an empty stomach, they're supposed to dissolve things like cysts, clots, fibrous growths. I don't know if the white lesions fall into those categories. It's also supposed to improve circulation and reduce inflammation. In any case, he's really turned a corner since taking them. His poor memory is really improving and he's been feeling much more focused. (He has an ADHD diagnosis). He seems more organized. His grades have shot up, as well.

Another good thing is taking B vitamins. I think they help with the neurological symptoms. I agree with Tom, too, about the soy. Soy is almost as bad as gluten for my son.

I hope you find some answers. I know it's so frustrating with these doctors.