[Megan]

I have been diagnosed with PN with no confirmed diagnosis yet but have been reading a few papers on Coeliac Disease and the emergence of PN in some patients as the presenting sign.

My question is, for those of you who have had PN manifest first and then were diagnosed with Coeliac Disease later, did you have GI symptoms all your life? Did you suspect that you had anything like CD?

Also did anyone have liver problems preceeding PN?

Thanking you in advance for any clues!

[jccgf]

Peripheral neuropathy related to gluten sensitivity can occur without any GI symptoms at all. It is also possible to have full blown celiac disease without any GI symptoms. Strange, but very true!

If you are curious about testing for this the antigliadin IgG and IgA tests are the best indicators of gluten sensitivity, although the anti-tTG test is the most specific for the intestinal damage of celiac disease. It would be good to have them all, along with a total IgA to rule out IgA deficiency.

This is one of the better articles.Gluten Sensitivity as a Neurological Illness
The full text is available for free, but you need to register.

I had some neuropathy symptoms related to a B12 deficiency, that reversed after treating the deficiency... a year before I realized my family had gluten sensitivity. So, I can't speak directly to your circumstance with a personal example. I did personally have a life time of nagging GI complaints.

You can find more info here:
The Neurological Manifestations of Gluten Sensitivity

Neuropathy

Cara

[Megan]

Thanks Cara.

Would visualisation of the bowel during colonoscopy detect problems/abnormalities as far as CD goes IF they existed? That would be the closest I've ever had to investigations of the intestinal tract.

I haven't had IgG or IgA done at this point. I have had no specific/long lasting history of GI problems - just occassional discomfort like everyone else on the planet probably experiences from time to time.

I am just trying to eliminate causes for this PN as the doctors seeem to have given up!

[jccgf]

Don't you give up, at least not until you've exhausted all the possibilities, especially the treatable ones.

Would visualisation of the bowel during colonoscopy detect problems/abnormalities as far as CD goes IF they existed?

No, the damage diagnostic of celiac disease cannot be seen during routine endoscopy. It is an endoscopy, and not a colonoscopy, that they must do because the damage is actually in the small intestine. They need to take biopsy specimens, a minimum of 6-8, preferably more~ some recommend 15, slice and mount them correctly, and they need to be viewed by a pathologist who knows how to recognize the subtler changes.... many just don't.

And... because gluten sensitivity can cause neurolgoical disease without intestinal damage, a negative biopsy would not entirely eliminate the possibility of gluten sensitivity causing PN. The antigliadin antibodies are probably the best test for that, but there are others they look for that I believe are mentioned in some of the abstracts.

Enterolab also offers a stool test, which looks for antibodies in the stool. These are not mainstream tests, but I've known many many (double on purpose!) who have had positive results after removing gluten based on the results of the stool test. Still, I'd recommend the blood testing first.

You've had your B12 level tested? If not, that is a must do. And actually, it's not just B12 deficiency~

"But the two things which are relevant to CD are nutrition and immunity. People with CD have nutritional deficits because of malabsorption; common causes of neuropathy are B12 deficiency, B1 deficiency, B6 deficiency, and Vitamin E deficiency. Neuropathies are also commonly caused by the immune system through autoimmune mechanisims."..."Latov commented that 20-25% of people with CD might have neuropathy."
Celiac Disease and Peripheral Neuropathy, Norman Latov, MD, PHD 2002

Cara

[darlindeb25]

Megan,

I am just trying to eliminate causes for this PN as the doctors seeem to have given up!

Sometimes, it does feel this way, doesn't it? I truly do not think they know what to say. My neuro, on my first visit, had me so upset. "No, I don't think you have neuropathy, no, your reflexes are too good for neuropathy, no, ........." and I left the office in tears, thinking--what now? Yet, he had scheduled 2 MRI's, and EMG and another test for my tinnitus. The brain MRI showed all's good in my brainthank God I have one, the cervical MRI showed a herniated disc at C5-6, just a minor setback, I guess, and the EMG did show peripheral neuropathy in both wrist and hands. Then when I questioned him about WHY my feet, legs, arms, and shoulders give me so much trouble--WHY, I have the buzzing, the vibrations, the numbness, swelling, cold spots, burning, etc, he says to me, "Well, I'm sure you probably do have small fiber neuropathy, yet we really do not have an effective test for that!" I am thinking--you sent me away thinking I am nuts and I'm not!!!!! GRRRRRRRRRRRRRR!!!! It's so hard for them to admit to a patient that you actually know what is wrong when you walk in the door, they don't want you to know before they do, yet sometimes it takes them so long to figure it out.

No doctor figured out my celiac disease, actually, I am not doctor diagnosed so maybe I should say, my gluten intolerance. Yet, no doctor will ever convince me that I am not celiac. At any rate, there is no difference for me, celiac, gluten intolerant, I am gluten free forever. I was sick for well over 20 yrs and they didn't know why--now I deal with all these other mysteries. My neuropathy actually was diagnosed as carpal tunnel before I went gluten free, about 9 years ago. First my hands were going numb and the doctor put me on anti-inflamatories and within the year, my toes were going numb. When I questioned the doctor about my toes, he told me the nerves in my hands are the same nerves in my feet, that they run all through your body--end of story. I am thinking that was the beginning of my neuropathy, before I went gluten free. Gluten free slowed my progression considerably, yet it never went away. Some people do recover from their neuropathy when they go gluten free.

[Megan]

Cara and darlindeb25 - your input is much appreciated.

Similar to you darlindeb, I left the neurologists office about five weeks ago totally devastated as she made me feel that there was absolutely nothing wrong with me. Why she couldn't have said something like "well we have eliminated the most debilitating large fibre/demyelinating neuropathies - which is very good news, so we are now probably looking at this being a small fibre neuropathy problem".....I would have felt some validation of my symptoms. However I sat in the consultation room stunned as she said that all the tests were normal, then virtually dismissed me. I'm sitting there thinking "is that it - what happens now?"

So as probably many of you have done before me I'm not content to accept that there is not a diagnosable cause...so I am trying to read as many papers on the various causes of SFN as possible. Of course it may come down to it being idiopathic in the end and I will have to accept that, but NOT while there are still blatant gaps in the testing which has been done to date.

Cara I now have a fews days reading to do on CD (thanks for those article links). I will continue to add to my list of 'what I would like tested' when I see another neuro in December. The problem is ones confidence gets quite shattered during events like my visit to the first neurologist and I'm afraid that this next neuro expert may not like the fact that I have done some researching of this PN while I have been waiting for the appointment and thus treat me like a 'neurotic' or a 'psycho' - lol! I know I will have to be very diplomatic.

It's quite unbelievable that a person can have coeliac without GI symptoms. I definitely have a lot to learn!

[jccgf]

Ugghhh...

I was told (by the same doctor who ultimately found the B12 deficiency) that my symptoms were all things I said I felt, and they couldn't see, and all of the tests were negative so there wasn't much they could do. Actually one of the nerve tests did come back slow... but he decided that might have just been due to my long legs. Then he told me to call back if I started falling down.

I was literally leaving the office after my last visit... when he came out and stopped me at the check out desk, and told the receptionist to order up a B12 level. Thank Goodness! It was my third and final trip to see him, although he followed up with two more blood tests to assure my B12 level was rising.

I should have left this article, too, in case you haven't seen it. It is a great overview~
An Algorithm for the Evaluation of Peripheral Neuropathy

Keep on searching! Let us know, of course, if you have the gluten sensitivity testing done. I have a write up on Diagnositics in The Gluten File, too.

Cara

[Megan]

Yeah you're right. The symptoms are the subjective things felt by us, and the signs are the objective things provable to science. So tough luck when we have no objective signs!! We then get given other more sinister labels like 'nuts'

[Megan]

.... thanks for the Algorithm paper link. I found that early on in my search and it has been invaluable!

[northernlights]

I happened to go low-carb and gf just after I started to get neuro symptoms of the legs and arms. I then got back on gluten 9 months later for biopsy. 5 weeks after I got the biopsy and one week later the hands and feet started to "disappear" again. I went gf after that again. I had a negative biopsy but I stay gf.....
My doctors are not interested at all because I have negative tests (which were done low-gluten anyway)

My liver numbers were highsh, potassium below range.
I had had progressively looser bowels over the last years and occasionally slight runs lately. Before, I only had BM every other day, that was normal for me.
I am negative for DQ2 or DQ8.

nora