Can you have gluten sensitivity without Celiac?
 

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.

Absolutely.
 

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... :rolleyes:. 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!

New to this site
 

Hello everyone, A brief History:
Recently came back with adult daughter's (24 yo) blood work. She was diagnosed with Hashimoto's in 2006, had left lobe removed and put on synthroid. Taken off synthroid - put on levothyroxin and problems began.
Up and down she went with the dosages. Found herself separated from her husband right after starting full-time classes at university and having to move out of her home.
Stressful doesn't begin to describe.
Then things began to happen.
Depression (on wellbutrin and another anti-depressant for months), weight gain of over 30 pounds in a very short time, mood swings that you would not believe.

But during this "state" she produced grades to win her a scholarship, a Who's Who honor, and was approached to become an asst manager of a high end purse/leather goods store, which she had to turn down for she was moving 900 miles Back Home!

Now to present a new doctor has tested her for food intolerances and found them to include: gluten/maize-corn/soybean/casein-cow milk/wheat.
Ran the Celiac Disease Comprehensive Panel (which only has two tests)

Tissue Transglutaminase Antibody, IGA <3 U/mL (negative????)
IMMUNOGLOBULIN A 515 H 81-463 mg/dL (high)

I made an appt to see a gastro after hearing a biopsy is the conclusive test to run for Celiac. But who else? Her doc has a wait and see attitude. She wants to know now. As much as possible. We have begun the gluten free - casein free while watching soy, corn, etc.

I am confused and not sure what I our next test or move should be.

The main thing I am concerned with is her severe constipation issues. She had none upon moving back in May, 09. Could it all just be stress? Adrenals?? She has managed to lose the 20 pounds she packed on and is trying to lose more. She rides her bike constantly, always in her books, and drives over an hour to work. She must keep this job to stay insured!!
Help? Any information will be appreciated and I thank you so much.

I can understand the frustration with the levothyroxine.

It may be that going back on Synthroid might help. But also people with loss of thyroid from surgery tend to have problems afterword.

I know for myself, my left thyroid does not function 100%, from radio uptake testing. It is dead for some reason, infection or injury (I had receive some child abuse when young).
The part that remains can take up the slack. But I find when stressed, esp cold weather, I have about 2 wks of sluggish, depressed times. I have to wear leg warmers in winter sometimes.

T4 in levothyroxine supplementation is not the active form for the body to use. It has to be converted. Some people cannot do this efficiently. Zinc and Selenium are cofactors for this process.
If one is low in either, there can be problems with getting enough T3 for stressful times. Physical exertion, surgeries, cold exposure, illness are some stressors.

Also make sure she is taking it on an empty stomach....no food for at least an hour after. No calcium or other minerals at the same time (no milk, etc). Absorption from the GI tract is very sensitive and can be disrupted by any food/fiber present or minerals like calcium or iron etc.

In my years dispensing drugs, I have had many people who HATE Synthroid too... one had a reaction during surgery even blaming that brand. So it might not be the brand she is using, at all.
I use the generic Mylan. I am still on 75mcg and have been stable for several years now. But I do feel the onset of winter, painfully. My TSH remains at 2.0 or just below with every test.

People with gluten intolerance and other food intolerances may have an inflamed GI tract which may be making absorption erratic. Once the offending foods are removed, then things might stablize.

The severe constipation I have seen in patients with thyroidectomies.
It is a sign of severe hypothyroid functioning. This kind of thing, and including hair loss or orange skin pigmentation (which I had on my palms and feet) are signs that low thyroid is still present. You can broach and request some T3 (Cytomel) in this case. Some doctors will not give it, however. The natural thyroid is now unavailable thanks to our FDA and causing quite a problem with the millions who favor it over synthetic levothyroxine.

Thank you so much MrsD!
The new doctor she is seeing has put her back on synthroid (0.075 mg) and introduced cytomel (5mcg-twice a day). She sets an alarm in the am before getting up to take.
She is still losing alot of hair. I need to find the magnesium citrate doc ordered for the constipation, although he said let's try the GF diet and see if this takes care of it before getting the magnesium. She is like "uh, doc it's been weeks...unless that diet works overnight - I believe I will try the magnesium right away."

Bloods taken 09/25/09 claim a T4, FREE 0.9 0.8-1.8 ng/dL

TSH, 3RD GENERATION 0.09 L mIU/L

T3, FREE 276 230-420 pg/dL

The celiac and other blood tests were drawn on 10/15/09 and I wish he had run another batch of the T4 FREE, T3 FREE and TSH. But he did not.
He is going to discover exactly what is going on with this young woman, of which I am truly grateful - I mean, finally!!

But in the meantime, would the biopsy hurt? Should I get an endo in on the mix of things? Nutritionist? Is there an ADRENAL DOC in the house? :)

I am fairly new to the whole Hashimoto's deal - I thought with her surgery and scripts she was cured! WRONG! Now this.
A one stop doc is what we need. But what is the problem here? Thyroid? Stress? Adrenals? Digestive disorder? Bad luck?
She has just recently begun complaining of headaches, too. (An mri of the pituitary showed no adenoma) She runs very warm all of the time. (Which is a bit of a drag seeing that her mom is always freezing!)

Is celiac due to the thyroid? Or is thyroid probs due to celiac?

If you think the stress of the biopsy is too much for now, you could just postpone it, and go gluten free and see if that helps.

Sometimes going gluten free fixes things very quickly.

I do think she should take some magnesium ...maybe not a laxative dose, because most people are low in this anyway!

I have a magnesium thread here:
http://neurotalk.psychcentral.com/showthread.php?t=1138
for ideas.

Just over the RDA may give a little laxative help. If you go too high the resulting diarrhea may deplete MORE things!
So people usually start low and increase slowly until they start getting loose.

Once some of the inflammation goes down by going GF, then the other intolerances may stop leaking thru, and go away. No guarantees tho.

With all this complex stuff going on she may also be low in Vit D and B12. Low D affects the immune system and many other issues.
We have some good vids now on YouTube:
This thread has 3 links to videos on the newest:
http://neurotalk.psychcentral.com/sh...255#post582255

Malabsorption happens when there is gluten intolerance. Then a cascade happens with poor absorption of everything else.
I'd get some blood testing for Vit D levels. Fixing that may help alot.

She may not be absorbing zinc. Low zinc causes hair loss.
There are many dominoes to fall when one system goes wonkey!

saying thank you doesn't even begin to convey my feelings mrsd :hug:

Just watching her trying to cope is what put me into high gear and this information is sooo very helpful. Calming too! :hug:

Vit D, 25-OH, Total 30 20-100 ng/mL

Vit D, 25-OH, D3 30 ng/mL

Vit D, 25-OH, D2 <4

He has her taking 3000 to 4000 IU of Vit D3 daily.

The zinc issue, I will her bring this up to her doctor.

Is there one definitive blood test that could be run to find as many crucial deficiencies as possible, in people with problems such as food allergies, gluten intolerance, etc? It seems he takes one series of tests, finds something than orders more. Why not nip it in the bud, so to speak?
Since vitamin and mineral deficiencies tend to be the norm why not run as many all at once?

Which vitamin/minerals should be checked right out the gate?

Make sure you take D3, in a gel cap type form, not dry powder.

I think 4000IUs would be a good start, retest in 3-4 months.

There are no really complete testing instruments at regular doctors.
There is a Spectra Cell, alternative place. But at this point, the major issues are Vit D, B12, zinc, magnesium, etc.
She could do a B-50 on her own.

Many serum tests are not accurate. They will show very highs or very lows as warning, but many in between values don't reflect much. The Spectra Cell testing tests intracellular red blood cells.
http://www.spectracell.com/micronutr...itional-panel/

You know looking at that panel reminded me.... many gluten intolerant people do well on l-glutamine supplements. Much of the glutamine we eat stays right in the GI tract. Human breast milk is very high in glutamine, to develop the baby's GI tract to prepare it for solid foods. Some doctors give this OTC amino acid as a support for GI inflammation. It might work some for your daughter as well.

Cara should be along soon, with her more experienced opinions.
I will defer to her. ;)

Considering the bulk of my family's significant health problems have come down to food sensitivity and nutritional deficieny... boy do I wish nutritional testing is what they did at annual physicals. Even then, blood levels don't always tell the whole story, lab ranges are disputable, etc.

Many of us go through this long path of uncovering deficiencies one by one. In my family's case, we've had deficiencies of B12, B6, zinc, and vitamin D. That may not be complete... only what we know about. Much wiser to look at everything right out of the gate. Here is a start, at least:

From
JAMES LEMKIN,ND, CNS
http://www.pioneernutritional.com/pd...rticle7.04.pdf

Include both copper and zinc, because apparently the ratio between the two is important.

That is something.

I, too, feel that nutritional testing during physicals is a great beginning for just a base line count, if not just something to look back at during times like this.

Is it because of insurance that some pcps are reluctant? I just don't get it. So quick to hand out prescriptions with the vaguest of test results: headaches? here's some imitrex. some indigestion probs? here's the purple pill. Without any tests at all to substantiate the darn drugs. grrrrr.

Is it the gifts that the drug sales reps give or what? No tests to back up the need for the drug in most cases - at least none ordered by any of the failures that I have had as doctors - but they rip off those sheets with frenzy.

Well thanks to the POWERS THAT BE that there is information like this for those like me. I wish I understood many of the terms and so forth, but that will come in time. I can't begin to tell you how this has helped me soo much. When she was first informed of the casein intolerance I ran out and bought lactose free milk! *Please feel free to chuckle. Or oat bread for the gluten! ROFL
I have come a long way. Thank you sooo very much. Lots of reading to do and note taking and maybe send an email off to her doctor with a "hypothetical" case of a young woman with a possible dx of Celiac and a confirmed dx of Hashimoto's, to actually see what deficiencies this woman might have! Possibly zinc, maybe???

:hug:

The sad truth about doctors is this:

They do not receive nutritional training at all. Preventive medicine is not taught in medical schools. (Dr. Weil is trying to get Harvard to change this policy).

And what is worse? Doctors receive very little training in pharmacology....one course I believe.

Over time they have learned to rely on drug reps...in the past these salespeople were pharmacists and doctors themselves.
But starting in the 90's, this changed. Mega bucks started to drive products. Blockbusters like Zantac were among the first.
Now Drug reps are mostly glib talkers, maybe with a degree in business, some with none. They are told what to say, and how to respond. Pharmacists and doctors no longer are in the field seeing doctors, and because of their training are hesitant to LIE and deceive. There is a forum for these people now...
cafepharma.com where they talk about their jobs and doctors and what all. Their language is horrible, there is swearing there and rude attitude. Look it over some time when you have a free moment, and you will see why we have the drug crisis we do now.

And these are the people who convince doctors to give their patients all those strong drugs, without qualms. Negative studies are withheld (sometimes released after patent expires),
studies are skewed by the drug companies, and even doctors names are stolen on ghost written papers, and handed to your doctor as proof of how great the new drug is! It has turned into a shabby situation. And our FDA does nothing anymore since 75% of its income/funds come from drug companies!:rolleyes:

Sorry but that is my rant/vent for the day.

Rant away! I think I started it. I know they (docs) have been stripped of many of their powers because of insurance restrictions and almost seem to be competing with Big Pharma!
I feel many of our ailments are of an environmental nature, so to speak. The food we do consume has very little nutritional value, if any, add the toxic poisons all around us - then let's mix in a little 21st Century S T R E S S and you got some people that just implode with these hybrid illnesses. Most are correctable with good old fashioned NUTRITION.
But I will tell you NOT ONE of the doctors that I or she have seen have even mentioned better nutrition. This new one, though seems promising.

My father used to refer to them as a necessary evil! :eek:

My apologies neurocitizen for the hijack of your thread! I should have begun a new topic!! And I thank you for the start of the thread for it was a question of mine also - for my daughter's recent diagnose.

Healthy wishes to you.

The only gel type D3 I can find contains soy, and I can't have soy. What then?

i couldnt remember what else you didnt want, but this one doesnt have soy
Other Ingredients
Pure Olive Oil (fruit), Gelatin, Glycerin, Purified water.

Free of sugar, Salt, Starch, Yeast, wheat, Gluten, Corn, Soy, Barley, Fish, Shellfish, Nuts, Tree Nuts, Egg and Dairy Products. No Preservatives, Artificial Colors or Artificial Flavors.
Healthy Origins, Vitamin D3, 5,000 IU, 360 Softgels

I believe country life has a no soy as well. Other Ingredients

Medium chain triglycerides, [gelatin, glycerin, purified water (capsule shell)].
Suggested Use

Adults take one (1) softgel daily with food.
Does Not Contain

Does not contain yeast, wheat, soy, gluten, milk, salt, sugar, starch, preservatives or artificial color.
Supplement Facts
Serving Size is 1 softgel
Amount Per Serving %DV
Vitamin D3 (cholecalciferol from lanolin) 5000IU 1250%
*Daily Value (DV) not established.

Thanks Pabb and Happyisme09, I will check out Country Life, although in super sensitive forum I belong too, they said Country Life does contain more than 5ppm of gluten and that scares me. "Gluten Free" labeling simply means it has less than 20ppm of gluten, which is way too much for me.

Pabb, you didn't mention which vitamin your post was about.

pasted in at the bottom...Healthy Origins, Vitamin D3, 5,000 IU, 360 Softgels

I am new here -- this is my first post!

I haven't taken time to read through all the posts on this thread yet -- I wanted to respond first, in case I was called away to something else.

Yes, yes, and yes. My biopsy, DQ2 and DQ8 all came back neg. My blood work showed very high gliadin -- it was in the 80's.

I am a patient at the University of Chicago Celiac Center with a Diagnosis of Non-Celiac Highly Gluten Intolerant.

Pre-diagnosis, I mimed the symptoms of Celiac: Weight gain (during my gluten challenge), swelling, diarrhea, mouth sores, back pain, body aches, horrible fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day), Hypogammaglobulinemia as a child/teen (although this was probably a mis-diagnosis). This is a partial list.

Anyway, I am one of those folks who is highly gluten-sensitive without having Celiac.

Right now, I am wondering if I should have a DQ1 test . . . still learning . . . I was diagnosed in September 2009.

PS: Just want to add that I am feeling better now than I have in many, MANY years. I can't really remember feeling better.

I am pleased to hear that the University of Chicago Celiac Center is now entertaining a dx of Non-Celiac highly gluten intolerant. 8 years ago when my family was going through the testing...non-celiac gluten sensitivity was simply discounted... especially at the University of Chicago Celiac Center. I've heard that Dr. Guandalini has been doing some research in the area of gluten sensitivity. We were never a patient of his, but I did have a phone conversation with his staff, and have heard him speak in the past at a Celiac convention in Chicago.

We put my youngest on a gluten free diet with only a positive antigliadin IgG and have never looked back. My older daughter was 16 at the time, and opted to listen to the specialists who told her a gluten free diet was not necessary because she had a normal biopsy (although it showed lymphocytic gastritis, also disregarded, which is indeed associated with gluten sensitivity). She still believes it is not an issue for her...despite a lifetime of symptoms that scream gluten sensitivity.

Watch this video on non-celiac gluten sensitivity
 

You can have non-celiac gluten sensitivity. *edit* In essence, it is possible to have gluten sensitivity in the absence of celiac disease. *edit*

I wish my sister and father would get gene tested. It would be very interesting to me, to know what genes they have. I have double DQ1 genes, so my dad has to have one DQ1 gene. They have both been diagnosed celiac, without gene testing. I didn't have any insurance, nor money 9 yrs ago, so I went gluten free after seeing how much better my sister was. We both had the same issues, except she was very iron deficient, even having iron transfusions before going gluten free. Of course, 9 years later, my ferritin level was just above anemia, so I guess my iron isn't so good either.

DQ1 definitely is a gluten intolerance gene, and I have been told, a neuropathy gene. Even if I didn't know my genes, I would still be gluten free. Just a tiny CC makes me ill for weeks, so I made the best decision for me.