While the hurting part can change or not - medically, the confusion and scariness is where we have been/are/anticipating...and we all CAN relate... I for one will not sugar coat possibles, I will merely state possibles as just that. They are not PROBABLES or Likelihoods or absolutes...Keeping this all in perspective is key to getting on with getting on!

I mean, what would I DO if given the gift of ONE whole pain free day? I've made peace and gotten used to it all...I really think then I would go bonkers due to an absence of pain....meaning what has become NORMAL sensory input.

Me? I try to make a palatable lemonade...ideally sugar free? Not as easy as it seems, obviously...

Hugs and hope...It's in us. - j

Cara, I have never had diarrhea. In fact, I have irritable bowel syndrome with constipation all the time. Could it still be possible for me to have gluten sensitivity? I was wondering if it was worth mentioning to my doctor to test for it.

Wow i must admitt you both brought me to tears tonight. Why because
I needed them and they were ,good tears..I am going to copy them and
pass them on to others .WELL if you don't mind,doesn't matter doing it anyway. And Dakota i would ask your Dr. been through both,got a almost
happy medium..WEll not right now,awww hospital food. Sue

Yes, it is still worth checking. Recent studies show only about 30% of newly diagnosed celiacs have diarrhea. Constipation is just as common of a complaint. And some people have absolutely no GI symptoms. If you have IBS... for sure... check on gluten sensitivity. Also keep in mind that you can have gluten sensitivity affecting your gut, skin, nerves, brain, and more... without testing positive for celiac disease.

The antigliadin antibodies are not as predictive of villous atrophy (cornerstone of a celiac diagnosis) as some newer tests (anti-tTG or anti-endomysial), so the antigliadin antibodies have fallen out of favor for celiac testing. BUT... for those who may have gluten sensitivity without celiac disease, the antigliadin antibodies are probably the best test. So, be sure the antigliadin antibody IgA and IgG are included!

I also have some entries about IBS in the gluten file~ in relation to wheat and other food sensitivities. About half of those with gluten sensitivity also have casein sensitivity, and although there is not nearly as much evidence suggesting casein sensitivity might cause neurological disease... I think it is just a matter of time for the science to catch up with appropriate research.

Cara

The reason that casein or other intolerances may accompany gluten, is the
zonulin link. Zonulin channels are open for intolerant people...they are the
"holes" in leaky gut syndrome. It is thought when these channels are open that things from food get into our bodies and cause havoc.

There also was a study in 1999 that showed that constant use of NSAIDs, block cox-2 in the GI tract. Cox-2 has a beneficial action in the mucosa of the GI tract to keep out things undesirable from our blood stream. So it just may be that many people ACQUIRE gluten intolerance as a consequence of NSAID use.
The escalating occurance of this seems to parallel the availability and easy access of this family of drugs.

So people may not test positive for genetic celiac and still have significant gluten intolerance. The drug industry is working on a drug to close the Zonulin channels. So there is alot of interest there too.

Okay, to dumb this down for me, I ask my doctor to test for celiac disease? And ask him to be sure to include the antigliadin IgA and IgC? Do I need to specify any other specific tests? Thank you all for this info. I have a suspicion that gluten may be a problem for me. I lost about 50 pounds several years ago (gained it back). When I dieted, I cut out all bread refined grains and ate brown rice for a starch. My PN really improved. I am not sure if it was the weight loss, or the fact that my diet pretty much eliminated gluten. I thought is was the wieght loss, but now I wonder. Regardless, I need to loose the weight again.

You need to ask for tests for celiac disease and/or gluten sensitivity.

Request the following tests:

antigliadin IgA and IgG (indicates gluten sensitivity~ "gluten sensitivity" testing)
anti-tTG and/or anti-endomysial (associated with villous atrophy~ "celiac disease" testing)
total serum IgA (rules out IgA deficiency which can affect the results of the antibody testing by causing false negatives)


I think this page best discusses the importance of antigliadin antibodies when neurological disease is involved:
The Neurological Manifestations of Gluten Sensitivity


The distinction between gluten sensitivity and celiac disease is the part that may throw your doctor. Not everyone recognizes this distinction. The fact that gluten sensitivity can cause neurological disease without celiac disease is really quite new...based on research of the last 5-10 years.

Other pages that might be helpful are:
Gluten Sensitivity vs. Celiac Disease
Antigliadin Antibodies
Diagnostic Testing



Cara

The range of tests available are:

1). anti-tTG (anti tissue transglutiminase)

2). anti-endomysial (EMA)

3). IgA antigliadin

4). IgG antigliadin

5). and Total IgA concentration or may be called Total serum IgA

6). anti reticulin IgA

The total IgA serum needs to be done to eliminate the chance of you having IgA deficiency which about 5% of the population have. If IgA deficiency exits this would give a false negative result, even though you may have CD.

Have you got any links to the "off-label" use of ivig for neuropathy? I would like to bring this up with my neurology dept next time I see them as I would like to try and persuade them to put me ivig to see if it helps at all and any paperwork I could produce may help....

Hi. I can relate to your fear,anxiety,depression I could go on. I'm 29 and never thought I would have to deal with this. I too go to therapy and though my pn is severe pain where right now I'm still limited on what I can do I fear more things happening that I hear often on this forum. I do feel for me that the support I get from these people outweighs the fear of more happening if that makes sense. This is a very lonely and isolating problem. I see my friends carefree and active and its hard for them to relate. I think the support here from people going through the similar is important. With my therapist I am working on mindfullness which is trying to stay in the moment and work on ways to not worry and bring myself back to the present. I will say I have seen many therapist for 12 years. To me it should be up to you and not to be against your therapist but really I think instead of telling you what to do she should help you process both sides and feelings and let you make your choice. I encourage you to communicate or even print this post to share with him or her. On another note I think for me biofeedback helped so much for the anxiety and fear. If you want an email buddy. I'm here. Sending hugs