Hi PN friends,

Have had some new blood tests roll in... I have already been diagnosed with RA over the summer. My ANA switched to positive a few weeks ago, homogenous pattern. Rheumy thought maybe Lupus, but had a few more lupus blood tests done and all negative. So now my rheumy is telling me the positive ANA is from the RA, meanwhile my neuropathy worsens and is now literally everywhere... scalp, face, arms, legs, feet, hands, etc.

My primary decided to throw in the anti-gliadin IgA and IgG. The IgG was negative, while the anti-gliadin IgA was positive. I have no real idea what this means? My other celiac test was negative (the tTG-IgA Test) So... I don't have celiac, but maybe a gluten sensitivity?

Can gluten cause neuropathy?? I'm not sure what this means.

Any ideas? thank you!

Celiac disease can definitely be a cause of PN, including full-body SFN. It's a possibility in my case, though I can't be tested because I cut it out before I knew. If I were in your position, that is, if you're still eating gluten and it's a possibility for you, I would definitely have a intestinal biopsy, which is how you really diagnose the condition. If I'm not mistaken, you don't even need full blown celiac to have many of the problems, including neuropathy. And is gluten is an issue, then it's quite possible that there will be a cross-reactivity problem when it comes to a number of things, such as dairy, rice, etc. There are blood tests for the latter too. I wish I had had a biopsy done before I stopped eating gluten. If I want to know now, I have to eat gluten for at least 6-8 weeks, and gluten makes my symptoms far worse.

I hope this helps. Good luck!

Elevated levels of anti-gliadin antibodies can be associated with neuropathy though the mechanism underlying this is not clear.

This (slightly technical) paper might help you to ask the members of your health care team informed questions Neurological Dysfunction in Coeliac Disease and Non-Coeliac Gluten Sensitivity.

Oh yes it can! It can cause major joint problems as well. Are you going for the endoscopy? If a blood test came up positive for me, I would never eat gluten again. Have you done a 6 month trial of gluten free?



Sent from my iPhone using Tapatalk

To each their own, but the antibody testing is not a confirmation or proper diagnosis, but a first step. If gluten is taken out of the diet, then the diagnosis cannot be made and the cause will never be known. That's the very unfortunate situation I'm in, and I wish I had done it differently, but I didn't know this.

"Keep in mind that positive antibody results combined with positive genetic results only suggest the presence of celiac disease—the test results cannot confirm it. If these screening tests come back positive, the next step in diagnosing celiac disease is to get an endoscopic biopsy of the small intestine." (Screening - Celiac Disease Foundation)

If gluten is taken out, the endoscopy will unfortunately be useless for diagnosis purposes.

thank you everybody for your insight!

I did A LOT of reading last night. As it turns out, a positive IgA or IgG for gliadin is showing that the immune system is producing antigens against gluten (probably you all knew that, but I am slower over here) Anyway, apparently the presence of these antibodies proceeds a celiac diagnosis because celiac can take years and years and years to do intestinal damage. But even without intestinal damage, you can have your immune system destroying the other tissues of your body (NERVES ANYONE?) I read that I could go in for an endoscopy right now and it could be negative due to how expansive the intestine in and how long it takes for damage to be done on an intestinal level. I read that many other autoimmune diseases will show up before a celiac diagnosis. For example, rheumatoid arthritis or hashi's.

Then, my doctor rings me up this morning to discuss the results. She wants me to see a GI specialist, refers me over there. I call them and I can't get in until... wait for it... THE BEGINNING OF DECEMBER. So, okay, then I have to sit here and eat gluten and worsen all the while I wait for December?

If these antigens can long proceed a celiac diagnosis and I am already experiencing so many autoimmunity symptoms (joint pain, fatigue, mood issues, neuropathy, fevers, etc.) then I don't plan on sitting here eating gluten for another 3 months. David, I totally see your point, but I don't think I can do it. I think I will just commit myself to a life of no gluten instead. I feel like I'm at a place where I could prevent more complications if I just change my diet and lifestyle today.

Unless the endoscopic test is absolutely needed (say for specific treatments other than dietary abstinence of gluten)...I would not do it. The risk of getting a dirty scope still remains high and infection spread from other patients is still a big problem with it.
You could end up much worse if you go for the scope.

Doing the diet will be the end result recommended, which you can do yourself safely. Endoscopies make lots of money for the doctor and don't provide much for YOU in the way of treatment outcomes, and if you get a superbug or other infection in your GI tract you will be far worse off in the end.

Did you know that Canada as recommended no colonoscopies
recently unless certain conditions are present?
Screening for Colorectal Cancer (216) | Canadian Task Force on Preventive Health Care

This is the beginning of new treatments, to exclude scopes for now because of these risks.

I understand of course. You have to make the decision that you think is right for you. That's all we can ever do. That's definitely a long wait, and continued damage would be terrible. I recently had an endoscopy and colonoscopy done. The first GI gave me an appointment 7 months down the road. I then found another GI, called the office, and got an appointment 2 weeks later for both procedures on one day. And this is in Canada where wait times are as long as they get. So if you want to procedure, perhaps another physician can provide you with an earlier appointment.

Regarding the dangers of endoscopy and infection that MrsD. mentions, it's the first time I'm hearing about it. Are there studies/evidence for this? It would seem like immense incompetence when it comes to first world medicine. I've had three scopes done and my family and friends have them done frequently (especially those who are older) and I've not heard of one problem over the years. I find it difficult to believe that this level of immense basic incompetence is wide spread, namely, improper sterilization. I walked into a room that stunk of chemicals and they had taken 30 minutes to clean the room. Anyway, perhaps it's wide spread in the USA, I don't know, but it would be good to see some data on this. I suppose I'm never shocked at medical incompetence, but this would seem to take the cake. I mean, a failure of basic sterilization practices? But hey, I've seen some disturbing and sad stuff when it comes to conventional medicine, so I wouldn't be too surprised if what MrsD says is the case. I've just not seen or heard any evidence for it myself.

As for why Canada has changed its recommendations with respect to colonoscopies, it has much more to do with funding and the politics behind that than anything else. It's unfortunately a mainstay of socialized medicine. In recent years many services have been cut or reduced. There may be medical reasons for the change too, and I do think the testing is too frequent for a number of conditions, but it's important to note the leading reason for many of these policy recommendations and changes, which have nothing to do with patient care.

In the end, the endoscopy is used for diagnosis, simple as that. Without it, there is no diagnosis. This is what I've read and been told by a number of physicians since. I'll just say how I've been disadvantaged in not having known this when all this began. I don't have a diagnosis yet and I'm still searching. This results in my spending a great amount of time, effort and money seeking out a cause for my SFN that could just be Celiac. Perhaps it's not Celiac, and I'd need to do this anyway, but Celiac is quite likely, so it's possible that I'm wasting money, time and effort, which is not negligible. Moreover, not having a diagnosis means that I can't access certain services and may undergo certain procedures and drug trials that could possibly be unnecessary and harmful (and in fact any harm from a endoscopy should be set against such harm, etc.). It could also mean that I can't gain access to certain medications that come out in the future and that may be helpful. Some of this is general, some applies to Celiac specifically. Not having a diagnosis puts me in limbo in various ways. And there is a psychological dimension to not knowing one's diagnosis. This is important too. Finally, after I've healed my gut, or made a good attempt, I plan to reintroduce various things, and if I do have Celiac, reintroducing gluten and even various other grains and things like dairy may just put me back to where I am, which would be tragic. If I knew I had CD, I would not touch it ever again and I would have testing done for any cross-reactivity issues, so I'd know what else to avoid.

All this has led me to seriously consider reintroducing gluten for 6-8 weeks, at least two slices of bred as they say, and then have the endoscopy done. This is where I am. I wish I didn't have to consider this, but the other option is not good either, and I've mentioned the issues with that. Perhaps it's not CD for me, I don't know, but it's possible and it's becoming more of an option for me at this point. Of course, I feel what you're going through and I understand what you say here, which is why I still don't know if I'm willing to damage my body more with 2 months of gluten. It's a difficult and crappy decision to have to make, and I may just end up deciding like you to never know. That's for sure possible.

Anyway, that's my two cents. Good luck to you!

So I did some research and came across this: Transmission of Infection by Flexible Gastrointestinal Endoscopy and Bronchoscopy. It seems that there's little evidence for infections and that the evidence indicates otherwise, namely, that the rate of infection is extremely low. However, as the article notes, that could very easily be due to lack of clinical symptoms and lack of surveillance. And it turns out that you can't sterilize but only disinfect the scope. So it's worth considering this risk, it seems even if the evidence isn't there, because the data collection if weak. Though one reason for the the lack of clinical data/symptoms could be that the body fights off any such infection or that there aren't that many infections. It's just so difficult to tell without good date and that's unavailable it seems.

Deadly bacteria on medical scopes trigger infections

APIC |

http://www.medscape.com/viewarticle/849194

Benefit vs risk IMO for deciding on getting scoped.

If one is looking for villi damage only it may miss celiac...and many studies discuss this --glenntaj has discussed this too.

If you are looking for tumors/cancers...that is another issue, that may warrant a scope.

If the blood work suggests gluten intolerance or celiac, going gluten free for several months and retesting to see if the blood work changes is a much safer way to go.