I've had a myriad of tests after experiencing a small fiber-like neuropathy for the last year. The only thing that came out abnormal was a positive gliadin reading of 38. My neuro thought I might have Celiac so I went to a GI specialist. I had an endoscopy and the results were negative for celiac. So they did a prometheus blood test to check me for a celiac gene called DQ alpha and beta 1. The results say "yes" for celiac gene pairs present. I've been gluten free for about 4 months now and the neuropathy is lessening, although not completely gone.

My question is could I just have gluten sensitivity and not have Celiac? Are they different? I have no other symptoms. Thanks.

In fact, that may well be the more common condition--gluten sensitivity presenting with or without gastricd symptoms, an isolated anti-gliadin positive test, but no anti-tranglutaminase positive, which is associated with degree of villous atrophy (and no villous atrophy).

Although it is always possible for the intestinal biopsy to have missed atrophy, if samples were not taken from a wide variety of places and not interpreted by a specially trained pathologist.

JCC, AKA Cara, has accumulated a lot of info on this in the Gluten File, especially through the work of Dr. Hadjivassiliou:

http://jccglutenfree.googlepages.com...sceliacdisease

Wouldn't be a bad idea for you to look through the Gluten File, which is in the "stickies" at the top of this board, for any thing that interests/sounds like what you're experiencing. Believe me, if it's not there, it hasn't been discovered yet about gluten:

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

double post--sorry

I personally believe that gluten intolerance can be acquired, and does not require full celiac genetic expression.

I think this is a lifestyle issue. What led me to this opinion was a study from 1999 about blocking Cox-2 in the GI tract lining with NSAIDs... Cox-2 cytokines are valuable there to protect from foreign substances.

The emergence of gluten issues seems to parallel the OTC status of NSAIDs which greatly increased daily use. I suspect just about everyone has had some form of ibuprofen or its cousins by now.

Also the Zonulin channel discovery, may show us what actually opens those channels for many people.

Many, many more people have gluten intolerance, than those that have celiac. Celiac is just the tip of the iceberg, gluten intolerance is the ice berg. I read that 1 in 7 have gluten intolerance, and of course, most do not even know it.

You can have gluten intolerance and not have celiac, but you can't be celiac without having gluten intolerance...so which came first, the intolerance, of course. Gluten intolerance also causes vitamin and mineral deficiencies.

As others have answered, YES, you can have gluten sensitivity causing neuropathy without having celiac disease.

I can direct you to the pages of the Gluten File that address these things specifically~ there you will find excerpts from various literature that supports the reality of gluten sensitivity causing neurological and other disease, without necessarily testing positive for celiac disease (which is the gut manifestation diagnosed by villous atrophy).

Here are a couple such excerpts... in addition to a gluten free diet also be sure you also have optimal levels of those vitamins important for nerve health! (pretty much anything that applies to celiac disease applies to gluten sensitivity, except the requirement of villous atrophy)

Quote:

Gluten sensitivity as a neurological illness http://jnnp.bmj.com/cgi/content/extract/72/5/560 M Hadjivassiliou, R A Grünewald, G A B Davies-Jones: FROM GUT TO BRAIN Gluten sensitivity is best defined as a state of heightened immunological responsiveness in genetically susceptible people.15 This definition does not imply bowel involvement. That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception.28 Gluten sensitivity can be primarily and at times exclusively a neurological disease.29 The absence of an enteropathy should not preclude patients from treatment with a gluten-free diet. Early diagnosis and removal of the trigger factor by the introduction of gluten-free diet is a promising therapeutic intervention. IgG antigliadin antibodies should be part of the routine investigation of all patients with neurological dysfunction of obscure aetiology, particularly patients with ataxia and peripheral neuropathy. PERIPHERAL NEUROPATHY Peripheral neuropathy is the second commonest manifestation of gluten sensitivity. Prospective screening of 101 patients with idiopathic peripheral neuropathy has shown the prevalence of gluten sensitivity to be 40% (unpublished data). The commonest type of peripheral neuropathy we encountered is sensorimotor axonal (26) followed by mononeuropathy multiplex (15), pure motor neuropathy (10), small fibre neuropathy (four) and mixed axonal and demyelinating (two). The neuropathy is usually chronic and of gradual progression. Patients with a pure motor neuropathy may progress to involvement of sensory fibres.

More here:

http://jccglutenfree.googlepages.com...ationsofgluten
http://jccglutenfree.googlepages.com...eralneuropathy
http://jccglutenfree.googlepages.com/diagnostictesting
http://jccglutenfree.googlepages.com...niggantibodies
http://jccglutenfree.googlepages.com...sceliacdisease

Did they run the blood tests?

endoscopies and biopsies can easily miss gut damage, too. The blood tests are calibrated to only show positive at a very high level, supposeddly to correlate with gut damage.

Some patients have had the video capsule endoscopy, and they found villi damage at the wrong end of the small intestine, not at the upper end....

But the celiac antibodies are ttg-2,
DH antibodies are ttg-3,
gluten ataxxxia antibodies are ttg-6.

If they only look for celiac, they are only gonna find celiac(not-celiac).

nora

Looks like there was an isolated positive antigliadin antibody... but that is enough to show gluten sensitivity.. and warrants a gluten free diet.

Is the anti-tTG6 antibody test available commercially? I thought it was only in research phases still... because I'd like to have my gluten consuming daughter tested for it when it is available. Is it only found in those w/ gluten ataxia, or with any neurological involvement? I'm not quite clear on that either. Dr. Hadjivassiliou has done so much to advance the understanding of gluten related neurological disease! I hope one day there will be more from him on HLA DQ1 ... because too much emphasis is placed upon HLA DQ2 and HLA DQ8 imo. His previous work has shown that 20% of those with gluten related neurological disease do not have the main celiac genes, but HLA DQ1. I cringe everytime celiac/gluten sensitivity is RULED OUT because of the absence of the main genes.

Quote:

From "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones: "Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with CD: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

Thanks to all of you for your helpful replies. My blood was drawn for a second time after the hospital messed it up last time and didn't send serum to the Prometheus lab. I expect results back in a week or two and will post the findings.

I'm more and more convinced that my neuropathy and occasional migraines are caused by the gluten. My gastroenterologist is basically clueless and wrote me off after the endoscopy came back negative for celiac (even though my blood test showed high levels of anti-gliadin antibodies).

I've been on a GF diet for about 4 months now and the neuropathy has diminished a great deal, although there is still a faint trace. I'm taking about 3000 mcg of B12 daily plus my other vitamins.

The side benefit of all of this is that I went to an allergist and found out that I've been "allergic to the outside" for most of my life without knowing it. I was given some allergy medication and am now getting allergy shots. Low and behold my head clears up so the headaches and sinus pressure may have been due to common allergies!

Nevertheless, the whole experience with the U.S. health care system has left me bitterly disappointed. I never really had to use it until now and I'm shocked just how poorly it serves for diagnosis and treatment. I consider myself almost self diagnosed even after paying a lot of money for many different tests. I'm grateful that I'm feeling better and hoping that it's as simple (although hard!) as controlling my diet. Also, thank goodness for forums such as these which have served as virtual care centers.

I must say though that after going GF, I lost about 10-15 pounds just eating better so that's also a good thing. It's amazing how much trash we put into our bodies without knowing it.

Thanks again.

This is the sorry truth. GI's rarely have appreciation for gluten sensitivity that doesn't present with villous atrophy. In their defense, I guess, gluten related neurological disease in the absence of celiac disease is NEWLY recognized within just the past ten years or so. But, in my experience, the GI chose to ignore any of the new research I called to her attention. No defense for that.

I've decided our doctors are very well trained for critical/emergency care, surgery, and simple conditions like strep throat, ear infections, etc. Both of my parent's were saved countless times in emergency care settings. (Although, we have more than our fair share of health care horror stories, too!) Our doctors aren't quite so good when it comes to treating chronic health conditions. When my daughter presented with seizures at age 12... they never looked for any underlying cause. It is easier for them to just prescribe anti-epileptic drugs, which may or may not work. Unfortunately, sometimes a vitamin or diet change is all that is really needed.... but they don't bother to look for vitamin deficiencies or food sensitivities.

I also keep preaching, to myself, I guess, that neurologists need to take ownership of gluten related neurological disease. They keep passing us off to the GI's because they think that GI's "own" celiac disease, but the GI's don't know diddly about gluten related neurological disease, especially when it doesn't meet the diagnostic criteria for celiac disease.

My young adult daughter is still eating gluten because her GI insisted her positive antigliadin antibodies meant nothing. The GI also ignored her lymphocytic gastritis found during biopsy, which is indeed suggestive of gluten sensitivity, but not diagnostic of celiac disease. And at age 16, when the diagnostic testing was done on her... my daughter opted to believe that a doctor "with all those years of medical school" knew better than her mother... . And of course, at 16 she wanted to eat pizza. At 23, she still wants to eat gluten, and just suffer with the chronic health conditions that are now "normal" to her.

In any case, I also feel my family has mostly been self diagnosed thanks to the Internet and forums like these. On occasion, a few doctors did something right, but mostly they fell short. Here is our story: http://jccglutenfree.googlepages.com/thestory

BTW... you may find relief in your other allergies once gluten has been out of your system for a while. I have! I used to have very significant seasonal allergies and frequent sinus infections. That all improved significantly once I removed gluten. It goes to an allergy load theory... that everything is sort of cumulative... and if you remove the BIG allergen... the others won't be so overwhelming. My son did the allergy shots when he was a child, and they did work for him. He was miserably allergic to trees, weeds, grasses, molds.

Glad to hear you seem to be improving. Keep an eye out for dairy, too. Cow's milk sensitivity is associated with autoimmune disease and neurological symptoms as well, although far less studied. But...studies do show that up to 40-50% of those with gluten sensitivity, also have casein sensitivity.

Thankfully, you don't need a doctor's prescription or permission to make dietary changes. Whew!