hi everyone,
new to the forum, is very informative thank you.

I have had burning toes/feet/fingers for 18 months, reducing sensation a few yrs - light touch, temp, ?proprioception. Mild PN dx with NCS feb this year much to neuro surprise ?must be large size as NCS +ve hands and feet. All blood tests normal for cause.

my normal dr is integrative med - she found low co q10, vit d, magnesium, low iron. b12 apparently normal. I have convinced her to give me methyl b12 tabs (with folate, b6) with all others supps - coq10, fish oil, magn, b12, probiotics. have noticed some improvements with b12 - can sleep with feet under sheets now, fingers seem more temp sensitive. Also had iron infusion so energy levels much better.

she also tested me for coeliacs - I am hla dq2 positive but tested negative to blood tests and gastroscopy. did go gluten and dairy free for 3/12 - but when tests came back neg restarted gluten. dairy definitely a no no for me, also fructose.

I am frustrated re ongoing symptoms, also hip/ knee pain, aches. my dr wants me to go gluten free again - my question is

if I go GF Again should I get blood tests done again while still on gluten? the last were in 2010.
if it were a gluten neuropathy how would I know?
how long should u try GF ? weeks/ months/ years?
are there any others with gluten neuropathy?
do you get increased burning after ingesting gluten? straight away

many thanks for any insights that might help. tambo
the b 12 definitely helps ( now taken on empty stomach thank you)

Welcome to NeuroTalk:

Going gluten free should be a longer trial for you. Being low in many nutrients suggests you need to be gluten free much longer...a year or more. Malabsorption of nutrients is one sign of gluten issues. Once you determine your issues are from gluten, then gluten free is for life.

Recovery can be slow. And yes we've had over the years PNers who were positive for gluten. Some have moved on to the Celiac communities as their PN resolved. Gluten free becomes a lifestyle and there are places online for just that.

Our board here has some threads about testing:

http://neurotalk.psychcentral.com/thread138655.html

This link of jcc is very complete with tons of information:
http://neurotalk.psychcentral.com/thread1872.html

Yes, you should be eating gluten for any blood testing. And from what I have read over the years, the longer you go gluten free, the more you will notice reactions to slips or hidden gluten in foods.

There are other foods that can cause burning... MSG, a food additive, I get burning from nightshade veggies (potatoes, tomatoes etc), and some people have histamine release from certain foods.
http://www.allergyuk.org/fs_histamine.aspx

hi, thank you for your reply. just the info I needed. i have also found the following article from hadjivvasilou in 2010 re gluten sensitivity from gut to brain. all the testing terminology a bit confusing for me at times, but will print and take to dr and get the blood tests again before dropping gluten. when my tests came back negative previously I was quiet happy to reintroduce gluten into diet - prob not ready to accept that I am better without it. would rather 'know' for sure that I am doing the right thing - so my family don't think I am making it up. PN is hard for other people to understand as it is. not to mention diet - my parents still don't understand fructose malabsorption well ( me and my 8yo dau and 6 yo son all have it). will bite the bullet and try gluten free again - just have to get my head around it and try for a good year. thanks again. tambo.

I agree with what Mrs.D said. I just would add, even if the blood work comes back negative, go gluten free any ways and give it a chance to help you. It takes time to heal and neuro symptoms can take even longer. Dairy and gluten intolerance often goes hand in hand.

Did the doctor tell you what your Vit B12 level is? The level many doctors think is fine often is not. Also the Vit D level...did you get copies of the tests?

--on celiac/gluten sensitivity testing:

The anit-transglutaminase IgA test is the most specific for the villious atrophy of frank celiac.

The anti-gliadin IgG test is the most sensitive, but least specific, test forgluten sensitivity. A positive here means that the body is making antibodies to gluten on the most basic level. As Dr. Hadjivassiliou has pointed out people with an isolated positive anti-gliadin IgG test are more likely to have gluten sensitivity that presents without gastric symptoms, and may even have neurologic symptoms as first presentation. (Gluten sensitivity/celiac is now known to be linked to neurologic problems, most specifically cerebellar ataxia and peripheral neuropathy, and these may involve direct attack on nerves and not just nutrient deficiencies from malabsoprtion.) Moreover, while celiac has traditionally been linked with the DQ-2 and DQ-8 HLA genetic profiles, this is being called into question; Dr. Hadjivassiliou has found the DQ-1 subtype is often prone to the isolated anti-gliadin IgG finding and to non-gastric symptoms.

I have the fructose thing too. I did gluten free for 3 yrs, and it didn't work for me. I found the fructose thing after that. I think gluten free is easier than avoiding fructose. But that is just my opinion. I can have a small bit of fructose if it is hidden in some food. But stand alone consumption of fruit, apples/pears, or candy or fruit juices, will set me off quickly. Some salad dressings are high in sugar I've discovered. I use one now that is pretty low and it seems okay so far.

If you feel you can do dairy, I'd suggest Kefir to you. It seems to have really helped my GI issues of gas/bloating etc very well.
I use the unflavored plain one. Lifeway Kefir is gluten free and 99% lactose free. I have about 4 ounces daily now. It is very high in probiotic support.... 12 cultures with generous numbers.

I agree with Dr. Hadjivassiliou. I am a double DQ1, almost identical, one being gluten intolerance the other a mix of intolerance and neuropathy. I have always claimed to be celiac, and actually have no doubt that I am. My dad and sister are both diagnosed celiacs yet have never been gene tested. I would love to know which genes they have.