[JB63]

Does it ever end, this crazy medical menace of causes of PN? My brother, age 57 was just diagnosed with celiac disease after much testing. I guess I'll have to add this to the list of tests when I speak to my neuromuscular doc tomorrow, as I understand this is genetic.

[mrsD]

Some gluten intolerance is acquired over time. Some is inherited.

True Celiac with genetic markers is inherited.

But leaky gut, and other obscure factors can lead to gluten escaping into the blood, not being properly digested, and hence triggering autoimmune issues.

This link explains all the testing, and various nuances of both.

http://neurotalk.psychcentral.com/thread1872.html

[darlindeb25]

Many of us with celiac have PN because of the vitamin and mineral deficiencies we suffer with before going gluten free. After going gluten free it's still difficult for us to get the vitamins and minerals we need without supplementing. I truly believe that EVERYONE would be better off without gluten. Our bodies just can't digest todays gluten.

It's not a death sentence to be diagnosed with celiac. It may actually help immensely with PN. Once I went gluten free and started taking B12, I was able to greatly slow the progression of my PN.

[Jaspar]

There are several different tests and we do have some family members with neurological issues who were diagnosed with problems with gluten (one distant relative was thought to have a psychiatric disorder for years but actually had Celiac). Another had what used to be termed as the dropsies. I read about a test the other day about gliadorpdin and casomorphin and wondered if that type of leaky gut with the casein and gliadin affecting the brain would also possibly cause other neurological issues as well? What I read was here, but it didn't say anything about that -- I guess that is my long way of asking if the test with blood or enterolab came out negative would it be worth testing with great plains lab? Would that type of positive effect possibly affect periphery?????

[hopeful]

Originally Posted by mrsD

Some gluten intolerance is acquired over time. Some is inherited.

True Celiac with genetic markers is inherited.

But leaky gut, and other obscure factors can lead to gluten escaping into the blood, not being properly digested, and hence triggering autoimmune issues.

This link explains all the testing, and various nuances of both.

http://neurotalk.psychcentral.com/thread1872.html

Hi Mrs. D, I am so sorry to hear about your cat. I have two of my own and my daughter had to put hers to sleep over the weekend. She had a cardiac condition they did not know about and her organs were shutting down. Hang in there and enjoy this time with your cat. hopeful

[JB63]

Originally Posted by Jaspar

There are several different tests and we do have some family members with neurological issues who were diagnosed with problems with gluten (one distant relative was thought to have a psychiatric disorder for years but actually had Celiac). Another had what used to be termed as the dropsies. I read about a test the other day about gliadorpdin and casomorphin and wondered if that type of leaky gut with the casein and gliadin affecting the brain would also possibly cause other neurological issues as well? What I read was here, but it didn't say anything about that -- I guess that is my long way of asking if the test with blood or enterolab came out negative would it be worth testing with great plains lab? Would that type of positive effect possibly affect periphery?????

I have to call my brother to find out what tests he had exactly. Interesting enough, he was diagnosed as a schizophrenic as a child. He really does not fit the picture tho' since adulthood. No more hallucinations or delusions, finished school and has a job. He is very neurotic with an OCD component. Very very, nervous and decompensates under severe stress and takes lot of meds. He reminds me sometimes of Bob in the movie "What About Bob."

As for me, I don't know anymore about testing, I am just plain old tired of dealing with doctors with aberrant personalities. I am disillusioned with my neuromuscular doc. My pain and disability mean nothing to her, She actually resented calling me back ( second call back request since May) to give me MRI results and to discuss my wheelchair prescription. She told me we would discuss it and I could get the prescripton at my next visit.....Dec. 26th. How nice of her, since I can barely walk with the rollator now.

[mrsD]

You know...it borders on criminal and inhumane how some doctors are. I can get really angry on this subject.

In fact I am going thru a bit similar with our CAT.... the Cat vet stringing us along for umpty ump tests leading to a 5000 surgery.

I found a 4th vet who is humane and responsive... and that is where I am going now. But really...the testing Oreo had was $2000 including ultrasound guided needle biopsy, which diagnosed her cellular type cancer. The cat specialist who sent us to this test, now wants to do an exploratory invasive laparotomy for $1600 with 8 more biopsies, a cardiac workup and more xrays!

The new 4th vet, was wonderful, listened and wrote everything down himself (no tech doing it all like the special vet) and explained he would not do that to his own pet! Which is what I wanted to hear. So we are staying with him as he gives her a steroid pulse to see if he can arrest the growth and buy her a few months. Her cancer is in the lymph nodes hence surgery really pointless. This would be equal to any intestinal resection and far less painful. Her life span left is not long anyway either way, perhaps 6mos but maybe as short as 2.

For what human doctors charge and their behavior you'd think they would care some for how you get around and feel. But I've been on the net here for a decade now, and it is the rare post that describes a compassionate caring physician these days!

It appears that neurologists are the worst. Not all, but a fair number. Second in my rant: doctors who will do testing and put you thru it all, and then not interpret the results in a meaningful way. The B12 is one example.

I can really sympathize with you.... it is discouraging just being ill, and impaired, and having a jerk doctor, add insult to that pain is just revolting.

[tonetones]

my name is antoinette and I am from ca. I just got diagnosed with ciliacs. well, my father passed away from als and I was told that ciliacs mimics als. I also have pku. does anyone know if ciliacs is related to als? Is that how als starts? because I took care of my dad and I am going through the same symptoms as he did. but then if ciliacs mimics als then it confuses me. I been going to the doctors and they keep finding nothing. my dad went through the same thing. I get a va pension and a little from social security and cant afford to buy a months worth of food. so I am worried im gonna get worse. after paying bills I buy a little gluten free foods but its not enough til I get paid. does anyone know of any programs that can help me?

[pabb]

Originally Posted by tonetones

my name is antoinette and I am from ca. I just got diagnosed with ciliacs. well, my father passed away from als and I was told that ciliacs mimics als. I also have pku. does anyone know if ciliacs is related to als? Is that how als starts? because I took care of my dad and I am going through the same symptoms as he did. but then if ciliacs mimics als then it confuses me. I been going to the doctors and they keep finding nothing. my dad went through the same thing. I get a va pension and a little from social security and cant afford to buy a months worth of food. so I am worried im gonna get worse. after paying bills I buy a little gluten free foods but its not enough til I get paid. does anyone know of any programs that can help me?

You don't need to buy ANY specialty gluten free foods! stick to unprocessed, unadulterated food. Meat, veggies and fruits. then start looking for non gluten grains such as rice. good luck

[pabb]

Originally Posted by JB63

Does it ever end, this crazy medical menace of causes of PN? My brother, age 57 was just diagnosed with celiac disease after much testing. I guess I'll have to add this to the list of tests when I speak to my neuromuscular doc tomorrow, as I understand this is genetic.

Yes, you need to be tested immediately! I would think that the doc's office could order this without a visit....good luck