Celiac Disease
 

I just went to a new doc who is testing me for Celiac. I don't know that I have it but I was surprised to learn its link to PN.

http://www.neuropathy.org/site/News2?id=8201

Neurological disorders are estimated to occur in 6-10% of patients with celiac disease with peripheral neuropathy and ataxia being the most frequently described. The peripheral neuropathy associated with celiac disease is most commonly sensory and axonal. The small sensory fibers are frequently affected and a small fiber neuropathy can be diagnosed by skin biopsy. Sometimes patients can develop a more severe generalized or multifocal neuropathy with weakness and sensory loss or with autonomic neuropathy symptoms.

There is a lot of info regarding neurological conditions and Celiac on this page from the Gluten Sensitivity & Celiac Disease Forum here at NT.

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

Thanks Lara. Is the information there current? I see the thread was created in 2006 and the most recent post was over five years ago.

I was not aware of a neurological link to celiac disease. I didn't know that one in 133 Americans are at risk yet only one in 4,700 are diagnosed.

I have supposedly had every test (over 2.5 years) and everything has been ruled out. Apparently not. It may not be my cause, but it is somebody's cause. Those with idiopathic PN should be tested.

https://www.foundationforpn.org/livi...iacdisease.cfm

Hi beatle :)

I am pretty sure she keeps the info. on her linked site up to date. It's at the very top of that post I left earlier.
I note an update in there for 2014 but haven't double checked all her info there in ages.
https://sites.google.com/site/jccglutenfree/

Yes, we had a member here who moved to the celiac community, who had gluten induced PN.

This is why I continue to suggest it to newbies here. I also keep to a gluten free life (with only very occasional cheats), but I also have GI problems to reinforce me to it.

If anything, the evidence mounts since Cara made her website, and not the reverse. Her youngest daughter had a seizure disorder that resolved by stopping gluten.

There are many articles on Google like this one:
http://www.neuropathy.org/site/News2?id=8201

My three neuros and two MD's never brought it up while assuring me that we have "checked everything", "ruled everything out" and that we will probably "never know the cause". These are all things that I have been told.

But I never considered it either. I didn't realize it can cause nerve pain, numbness and bone loss, that it can develop later in life and that the hallmarks can present well after the symptoms of PN.

Even if I don't have it, I know I need to keep searching in spite of what I have been told. Thank you again Mrs D for inspiring me to keep going and to be open to possibilities. :hug:

I was tested for celiac both blood and biopsy during a colonoscopy. Negative on both. But I've gone gluten free and cut back severely on sugar because I keep reading about gut health and immunity and all that. I need to know I've done what I can to hopefully heal some nerves and feel better. I so miss all my sweets though! :wink:

Just to be more clear....

There is real genetic Celiac... which can be identified with specific blood antibody tests, and DNA markers. The endoscopic test is really not necessary for most people. And given that the news about contaminated endoscopes with drug resistant bacteria being reported now, I'd avoid an endoscope if the blood work shows issues alone.

But the gluten intolerant people, may not test positive with the blood work.Theirs is considered "acquired", for the most part.

The Gluten File is maintained on Google by Cara and has all the newest stuff on it that gets published.

https://sites.google.com/site/jccglutenfree/

My new doctor ordered a celiac panel yesterday. Mrs D, do you think it would be better to consume my normal diet leading up to the test so that any antibodies would be detected or should I refrain from consuming gluten?

Oh, yes, you have to be consuming gluten for things to show up.

So don't go gluten free before testing. The DNA results should not be affected, but the antibodies will change if gluten is not being consumed.

That won't be a problem for me. Even if I don't have celiac disease, I should probably cut back on my gluten consumption (after the test).

So Beatle, I assume your results were negative?

I went to see a gastro guy today, and he was fascinated and very interested in my neuropathy. That alone was a shock, but I was even more shocked when he said he wanted a celiac test done. He said between the neuropathy and my consistently low ferritin levels (which no doctor has ever expressed interest in) that celiac disease has to be ruled out. I told him I have a friend with CD and I don't have any of the symptoms he has, but he said not everyone has the classic symptoms. I didn't realize that. Learned something new.

Recent news on the celiac-neuropathy front.

http://www.medicaldaily.com/celiac-d...sorders-333206

"Currently, 30 to 40 percent of all neuropathy cases are idiopathic, meaning they have no known cause. What if a percentage of those suffering from mysterious neuropathy could fix their pain by being treated for celiac disease? Researchers need to expand their study with a larger number of study participants, but the link is there and it needs to be unraveled, according to researchers. In the future, when a person is diagnosed with neuropathy but can’t figure out the cause, Ludvigsson hopes their neurologist might consider screening the patient for celiac disease. A gluten-free diet may actually stop the pain."


________________________

Yes, negative for celiac for me. But I support it and any testing that can point to a possible cause. I too have had doctors and neurologists interested in my PN on the front side, only to order tests and then send me on my way.

I wasn't even there to see him about it, but he hopped all over it. He didn't even talk about the positive FOBT (Fecal Occult Blood Test) that I was there for until the end. He was less concerned about that than the neuropathy being idiopathic.

I was hoping for my results to be positive so I could address it. "Idiopathic" gives us nothing to work with. Maybe you have celiac though. You did the test?

I have the script for it. Will go get the blood drawn tomorrow.

It will be the biggest shock of my life if it's positive, but it's worth a shot, I guess.

When I saw the Rheumy he wanted to test me for Celiac disease because it could be a cause of the SFN symptoms. I have a family full of Celiacs. I told him to save the money on the test because I don't eat wheat or gluten :(.

The test doesn't seem as accurate as one would hope. Some of my cousins have obvious signs of having issues from eating wheat and have a parent, aunts, and grandparents with this disease. Their tests were negative. I told them just to stop eating gluten.....the don't want to. It will be interesting to see if they get tested again after a few more years and what the results will be.

I didn't even know there was a celiac test until it was ordered for me.

I wish I could identify my cause and if it were something like celiac... well, it seems like an easy one to manage.

The standard blood panel for celiac--
 

--which generally includes the following tests:

Anti-transglutaminase IgA (the test most often associated with villious damage)
Anti-gliadin IgA
Anti-gliadin IgG (the most sensitive, but least specific marker for gluten reactivity)
Total IgA (if one has hereditarily low IgA overall, the other tests often do not give accurate readings)

--still has about a 15-20% unreliability factor, in that roughly that percentage of individuals who have symptoms but show negative on these tests will show villious damage on small intestinal biopsy (the current gold standard for celiac testing). Often, though, such people will show the damage is patchy or incomplete, especially at early stages.

And, of course, if the disease is at early stages, and an endoscopy does not sample sufficient duodenal or intestinal locations, patchy/incomplete damage may be missed. There have been some surveys saying that the typical endoscopist normally takes only two/three sample when six-12 might be recommended, from varied locations, in people who are celiac suspect.

Part of this is that doctors, even gastroenterologists, have been trained to think of celiac as rare--it's not high on the list of suspects, especially when the presentation is not classic (anemia, gastric complaints). But celiac is not that rare--it effects about 1.5% of Caucasians (with higher incidence among those at higher latitudes), and it has become increasingly evident it has non-gastric aspects, such as skin (dermatitis hepatiformis) and neurolgic (neuropathy, gluten ataxia) manifestations. But depending on how familiar one's doctor is with all this, one may have to educate said doctor. The Gluten File is a good place to start:

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

As I expected, I came back negative across the board. Here's what they tested:

Celiac Disease Panel

Endomysial Antibody IgA
t-Transglutaminase (tTG) IgA
Immunoglobulin A, Qn, Serum

I have Ulcerative Colitis. I was diagnosed May, 2014. Six months later I started to have nerve problems. I am going to be tested for AST (small fiber neuropathy) next month. My nerve issue is definitely tied to UC.

A gut issue being the cause of my SFN is one of my top four likely candidates. I seem to toggle back and forth on the most likely candidate based on the day of the week.

All I know with the gut aspect of things is that I haven't been right since I tore up my digestive tract with iron supplements in August of 2013. My full blown SFN symptoms set in 3 months later.

:Grin-Nod::Grin-Nod: Me too

UC is a AUTOIMMune disease of the gut of the colon, just like chron's and celiacs, and those have known association(or triggers) for other autoimmune diseases.

That celiac panel--
 

--is a rather older panel, especially with the anti-endomyesial assay.

Most of the newer ones also test for deamindated anti-gliadin IgG and IgA (somewhat less specific for villious damage or frank celaic, but more sensitive for gluten sensitivity--the anti-gliadin IgG is often the first to turn positive in people with gluten issues).