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Sat, Jan 18 10:01am · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

There is research being done at the University of Minnesota. They have all sorts of information. https://sites.google.com/a/umn.edu/umnthemonoproject/home

Oct 16, 2019 · Celiac Disease (refractory type) in Digestive Health

My doctors thought I had the refractory type at first. Turns out I have the atypical form of Celiac Disease with its extra-intestinal manifestations which include, among other things, neuropathy.
I continued to have neurological problems despite the GF diet until my PCP thought to take me off the GF pizzas I was eating. It turns out that about 5% of those are contaminated – because they are processed in facilities that also produce regular pizzas. Anyway, my neuropathy has now vanished.
I read that patients with neurological complications are even more sensitive – such that even the foods marked GF can still contain too much gluten. I read that foods marked GF can contain up to 20 ppm. This can add up and trigger symptoms. I now eat mostly food that I know can not contain gluten. It is hard for example, to gluten me with a banana, watermelon, cantelope, etc. I also don't let anyone prepare my food for me. I almost never eat out. It has made all the difference in the world, so it has been worth it in my case.
Good luck to you.

Oct 14, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

My doctor took me off all GF foods unless they are "certified". Turns out the GF pizzas I was eating are often contaminated. That said, it is my understanding that those who have been on the GF diet for decades are finding it easier these days, primarily because of the better labelling of foods and the availability of the flours you are talking about. I have been diagnosed 4 years now and it is way easier as I learn, but I found it enormously difficult at first. I am a terrible cook to boot.

Oct 14, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

Celiac Disease, if you carry the gene for it, can be triggered at any age. You may want to be screened again just in case. That said, of course, not all cases of SFN are from Celiac Disease. I just threw my suggestion out there because so many doctors failed to screen me. They figure I have had Celiac Disease for two decades (at least). It was only in recent years that I went on to develop the neuropathy. I just feel blessed that they did identify the cause as I am so vastly improved.

Oct 14, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

The initial screening is a simple blood test. I think, as more doctors are aware of Celiac Disease, they will think to do it more often.
You give good advice.

Oct 14, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now – unless I get exposed to gluten – then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations – which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do – but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything – fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first – and if you do have Celiac Disease – get a nutritionist to help you. Most of all, remember that the diet gets easier.

Feb 10, 2019 · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

A functional medicine doctor is more familiar with the diagnosis. You may want to try one of those doctors as well. They at least won't meet you with disbelief.
That said, it was a world-class medical hospital system that gave me my diagnosis, back in 1999. I should say diagnoses, they found a couple of other things wrong too. Just keep looking until you find a doctor that can help you, is my advice. Many patients with either rare, complex, or commonly misunderstood maladies find they go through several doctors before finding the one that nails down a diagnosis and plan of care for them.