Gluten Sensitivity Vs. Celiac Disease

[CantEvenEatRice]

I am sure this has been asked many times, but I just do not understand what the difference is between Gluten Sensitivity and Celiac Disease? Is the only difference in the genes or is there more to it? I was diagnosed through positive blood testing (I don't know my genes) and my son just received positives through Enterolab. However, he does not carry a celiac gene, but does carry 2 gluten sensitivity genes. Can someone help explain this? Is Celiac somehow worse or the same as gluten intolerance? I am very confused!

[lonewolf]

Sorry I don't have an answer for you. But I wonder the same thing. I don't have the Celiac gene(s), but have had almost every symptom that would point to Celiac. I have responded phenominally well to the gluten-free diet. My son just had some testing done by Enterolab and we found out that he has 2 gluten sensitivity genes, like your son. This means that I have at least one gluten sensitivity gene also, as does my husband. So all my kids have at least one of the GS genes.

I think that there are a lot of people like this - not truly Celiac, not able to get a diagnosis, but truly gluten intolerant. From my personal experience, I would say that my gluten intolerance is every bit as bad as Celiac disease. I didn't ever have the chronic "D" and wasting away that many on this board describe, so that might be a difference. (Although now that I've been fanatically gluten-free, I DO get D with even a trace amount of gluten. Luckily it doesn't happen too often.)

My concern with Celiac testing is that people with "just" gluten sensitivity will never test positive, so are told that gluten isn't their problem. My 15 yo daughter had the full Celiac panel, tested negative on all 5 tests and we were told that gluten wasn't a problem. She experimented with her diet and finally came to the conclusion that gluten WAS bothering her. So she decided to go gluten-free. And what do you know? Her skin has cleared up, her PMS symptoms have greatly reduced, she's sleeping better and she doesn't have stomach aches any more.

I think that someday there will be an answer to this question that even doctors can agree on.

[CarlaB]

I have two gluten intolerant genes, my conventional testing all came back negative (I was gluten-free for the blood test, did a 6 week gluten challenge for the biopsy), and I presented the "classic celiac" symptoms. In fact, the GI was sure I had it until he did the biopsy.

[cathzozo]

I think there is a lot that the docs and scientists haven't figured out yet about this disease. They have identified something called celiac disease, but the diagnostic criteria they have given to it are very narrow, so a lot of people who don't have celiac disease (as defined by criteria) still have the same problems as people who are diagnosed as celiac, and can still solve it the same way - with the diet.

[AndreaB]

I have nothing concrete with this, just thinking outside the box.

Does anyone else recognize the gluten sensitive genes, or just enterolab?

Could it be that those are also "celiac" genes that haven't been recognized since people don't have the positive bloodwork/biopsies. Dr. Fine has done a lot of work in this field, has anyone else? Just looking at the dq1, it seems to tend towards neurological symtpoms if not checked. I don't know about the dq3. Didn't I read that the dq4 is the only one that doesn't tend towards celiac/gluten sensitivity? I was going to suggest that maybe the GS genes attack other parts of the body more, but I'm not sure. I know some people with dq1 have malabsorption, so that may not be a very good guess.

I believe they are pretty much the same thing, definately gluten-free for life.

Please don't attack me, I'm just thinking out loud. I don't have the answers, just something to discuss and think about.

[Mayflowers]

I have a celiac gene and a gluten intolerance gene. Enterolab said for all intensive purposes, I have "celiac disease" due to the immune reaction and the malabsorption, and I should be officially diagnosed by an MD. I've been gluten free since August and I know one thing..my indigestion, acid reflux and bloating are GONE!

I work in a medical school and the scientist that works in our lab said she knew of Enterolab and was thinking of getting tested herself! She also said she didn't know about the gluten intolerance gene. This must be something new that Dr. Fine discovered???

[Guest Kathy Ann]

Mayflower, I have similar Enterolab test scores as yours and they told me I should be diagnosed as officially celiac as well. No question about it. Like I said in another post, I sure hope Dr. Fine's intentions to publish by the end of this year are realistic. I am very eager to hear what he has discovered. It might really change things in the celiac community.

[Nancym]

Captn Obvious to the rescue!

How about consulting the Enterolab FAQ?

Open Original Shared Link

What is gluten sensitivity and how is it diagnosed?

Gluten sensitivity implies that there is an ongoing immune reaction to gluten in the diet, usually detected as antibodies against a subprotein of gluten called gliadin. Although recently these antibodies were looked for only in the blood and are found in 12% of the general American public, my research has revealed that these antibodies can be detected in the stool in as many as 35% of what are otherwise normal people (U.S. and International patents pending). If high risk patient populations are tested, or people with symptoms, the percentage usually exceeds 50%. It makes sense that the antibodies are more easily detected in the intestine because the immune system reaction to food is mainly a response occurring inside the intestinal tract. Thus, the end product of intestinal transit, stool, is the most logical (albeit more messy) place to look. This is the rationale of the new tests developed by EnteroLab to serve the testing needs of celiac patients.

There's a lot more there. Especially in the essay called "Before the villi are gone".

Open Original Shared Link

[CantEvenEatRice]

So can someone with only gluten sensitivity genes NEVER test positive through blood or biopsy, only stool? I tested positive through blood, but do not know my genes. My 19 month old son tested positive through Enterolab and has 2 gluten sensitivity genes, but no Celiac genes. I still say he has Celiac though when people ask because I think each diagnosis means the same thing.

[Mayflowers]

So can someone with only gluten sensitivity genes NEVER test positive through blood or biopsy, only stool? I tested positive through blood, but do not know my genes. My 19 month old son tested positive through Enterolab and has 2 gluten sensitivity genes, but no Celiac genes. I still say he has Celiac though when people ask because I think each diagnosis means the same thing.

Enterolab does the gene test that I had done. It's easy. They send you two swabs and you just rub the inside of your mouth at the cheek area and let it dry and send it back. That's how I found out I have the celiac and the gluten intolerance gene. No one in my family ever knew we had the celiac gene. I was really surprised to find it out. My sister still is eating wheat. She won't get tested...how stupid is that?

[VydorScope]

My opinion only, and Im not a doc, nor at this time plan to be one...

celiac disease is only considered dx'd IF and ONLY IF there is already damage done. If you think about that for a min, that realy means you waited to long to go gluten-free. Gluten intolerent, Gluten Insensitive, and others are just labels tossed on ppl that , IMO, have celiac disease, just have not done enough damage to show up in a bisopy. So that means they cuaght the issue early enough to prevent damage that could lead to much worse issues.

Side note, I have been told that if you get the lable celiac disease, it is harder to get health ins, but gluten intolerent/etc do not have that issue...

[AndreaB]

Vincent,

I would tend to agree with you. I'm glad we caught this early. My oldest son had no obvious symptoms, 2 celiac genes and mild malabsorption. None of us had any obvious symptoms to speak of. Even with two genes enterolab could not label him celiac since (I assume) it's not the gold standard.

[Mayflowers]

Well that's stupid that they label it celiac disease only if there's damage? How stupid is that? I'm only gluten intolerant until there's damage. right. It's like gluten intolerance is the higher end of the same disease. Why are they trying to split it up? We really need Dr. Fine's work published already.

[VydorScope]

Well that's stupid that they label it celiac disease only if there's damage? How stupid is that? I'm only gluten intolerant until there's damage. right. It's like gluten intolerance is the higher end of the same disease. Why are they trying to split it up? We really need Dr. Fine's work published already.

Yes it is stupid, but if you were to look it up in the magical all powerfull diagnostic hand book you would see that in America it is that way. Other countries have different opinions on it, and even many docs in this country do, but most just use the "gold standard" out of fear of law suite. This way they can point to document and say "see! I did exacltyt the right thing!"

[tiredofdoctors]

I don't have Celiac Disease . . . I have negative antitransglutaminase and negative antiendomysial antibodies, and according to the GI doc and the pathologist, "BEAUTIFUL villi" . He did say that I had irritable bowel syndrome, and that I had developed polyps (which he removed) I DID have "first high, then OUTRAGEOUSLY high antigliadin antibodies" according to my two neurologists. So, I DO have gluten intolerance, or gluten sensitivity.

The difference between my type of gluten intolerance and that of true Celiac Sprue is that I do not have intestinal damage -- and that may have come later, or have been there earlier, as I was always the child with diarrhea! I also was diagnosed with ulcerative colitis -- without biopsy -- when I was 20 and 7 months pregnant with my son. The diarrhea had been going on for two months, and the doctor had been telling me to "take kaopectate". Finally, I was so dehydrated, and called my mother -- told her that everytime I started cramping for the diarrhea, the baby "went into a big ball" . . . . I was beginning to go into premature labor. I was lucky that my doctor's PARTNER was on call that weekend. He sent me immediately to the hospital, couldn't BELIEVE what had been going on (grabbed my chart from the office), and had stool samples taken -- very bloody. That's where he came up with the ulcerative colitis.

My ONLY symptoms now, however, are neurological. The Perkinje cells in the cerebellum of the brain have proteins that resemble gliadin. They rely on gliosis for nutrition. The antigliadin antibodies have mistaken these proteins on my brain for gliadin -- and have subsequently destroyed them. This has also happened to the retinas of my eyes. The rods and cones contain a large amount of Perkinje cells.

My neurologists kept referring to my condition as "Celiac Disease" . . . . I kept telling them that I DIDN'T have Celiac. I kept insisting that the GI doctor absolutely ruled out Celiac. For that reason, I would not go gluten-free. It wasn't until my endocrinologist explained that whether it was called Celiac or Gluten intolerance they are almost one in the same with regard to the dietary restrictions. She was the one who took me by the hand, told me that I HAD to be gluten-free for the rest of my life, and recommended a dietician. It was that day that I stopped eating gluten, and I haven't knowingly ingested gluten since. And won't ever. I will FOREVER be grateful to her for helping me with that.

Hope this helps explain a little, anyway . . . . .

[CantEvenEatRice]

Wow! What a lot of great replies! Thank you--I am definitely understanding everything better now.

[Nancym]

Right now the medical profession doesn't really seem to differentiate between celiac disease and gluten sensitivity other than a few folks like Dr. Fine. But those of us with symptoms that go away when gluten free, that don't have positive bloodwork or biopsy, believe there are shades of gray that modern medicine isn't detecting.

Gene testing used to be limited to looking for 2 genes, DQ2 & DQ8, but Dr. Fine believes there are quite a few more. In fact, he said the only people that seem to be completely immune to gluten issues are ones that have double DQ4.

[corinne]

Another thing is that reactions to gluten can cause diseases other than celiac. I have tested negative for celiac (blood test, biopsy). I do have, however, collagenous colitis. It's symptoms are similar to celiac disease (diarrhea, vomiting) and I, like many other people with the disease, respond to a gluten free diet. At this point in time, there is very little research, but with time, other genes may be discovered that correlate certain diseases or perhaps other digestive difficulties with gluten.

[NoGluGirl]

I am sure this has been asked many times, but I just do not understand what the difference is between Gluten Sensitivity and Celiac Disease? Is the only difference in the genes or is there more to it? I was diagnosed through positive blood testing (I don't know my genes) and my son just received positives through Enterolab. However, he does not carry a celiac gene, but does carry 2 gluten sensitivity genes. Can someone help explain this? Is Celiac somehow worse or the same as gluten intolerance? I am very confused!

Dear Can'tEvenEatRice!,

I am gluten intolerant, and tested negative to a biopsy and blood tests for Celiac disease six years ago. According to the research I have done, there is a difference between Celiac disease and gluten intolerance. Celiac disease is the actual allergy to wheat, where gluten intolerance is a sensitivity to that protein found in wheat, barley, oats and rye. Some celiacs are gluten intolerant; some are not. This is from various Web sites. Many people believe that gluten intolerant individuals are Celiacs, but from what I have read, that is not the case. If I am wrong, feel free to correct me! I would rather get my information straight. I know my doctor has said that she has had a few patients who had tested negative with lab work and biopsies to have Celiac disease, though. She said they had positive results from diet.

Sincerely,

NoGluGirl

[Mayflowers]

What I found out from Dr. Fine's website was that celiac disease is different from a wheat allergy. The body doesn't make histamine and react in the same way as an allergy. Celiac disease is when the body identifies the gluten as a foreign invader like a bacteria and attacks it with white blood cells just like if it were an infection. The Iga is the indication of this happening. I'm new at this too so I may not be explaining it well.

I had a blood test for wheat, eggs, milk and soy "allergies" and it came back negative. My Enterolab test was positive and when I stopped wheat all my indigestion stopped. Incredible... !

[NoGluGirl]

What I found out from Dr. Fine's website was that celiac disease is different from a wheat allergy. The body doesn't make histamine and react in the same way as an allergy. Celiac disease is when the body identifies the gluten as a foreign invader like a bacteria and attacks it with white blood cells just like if it were an infection. The Iga is the indication of this happening. I'm new at this too so I may not be explaining it well.

I had a blood test for wheat, eggs, milk and soy "allergies" and it came back negative. My Enterolab test was positive and when I stopped wheat all my indigestion stopped. Incredible... !

Dear Mayflowers,

Now I am confused! I went to the Celiac.org web site, and another web site and it appears that gluten intolerance is the same thing as Celiac disease. I had negative blood tests for antigliadin, and skin testing revealed no reaction. A biopsy done several years ago revealed nothing. I tried digestive enzymes and they did not help. So am I a celiac?

Sincerely,

NoGluGirl

[AndreaB]

From what I've gathered on this forum, gluten sensitivity is on the spectrum of celiac.

I'll be curious to read Dr. Fine's stuff when he publishes. He may go into more detail. Could it be that the gluten sensitive genes are genes that he's learned cause problems and are actually celiac genes? Has or does anyone else test for the gluten sensitive genes?

[ArtGirl]

I have two gluten intolerant genes (from Enterolab). I will be 60 this month, and Enterolab's test indicated normal absorbtion. Do I have Celiac? I don't think so. You would think that after having this condition for the last 40 years of my life and still eating gluten I would have malabsorbtion issues. I don't. Does it make any difference as to how I treat the intolerance vs celiac. No.

I started a thread a while back asking about the severity of symptoms of those diagnosed celiac vs "only" intolerant, thinking that those with celiac genes would be far more sick than those with intolerance, and that the celiacs would react to very small amounts of gluten and intolerant folks would be able to tolerate more. My theory was immediately shot down. There seemed to be a wide range of symptoms across the board for both, from mild to severe symptoms. At least, from the population here on this forum.

As has been mentioned, there are probably more pieces to the puzzle than we know at this time.

[Mamato2boys]

From what I've gathered on this forum, gluten sensitivity is on the spectrum of celiac.

That's how I understand it, too. That all celiacs are gluten sensitive, but not all gluten sensitive people have celiac disease - celiac disease indicates intestinal damage. Again - that's just my understanding of it. I'm a newbie, so I could be way off ! When I brought my son to see the pediatrician and the pediatric GI, his blood panel was negative and his stool sample was negative for fat and blood. EnteroLab found fat in his stool, which means he has malabsorption. I had his genes tested and they stated specifically that he has two genes for gluten sensitivity, but no genes for celiac disease.

So.....wait......I guess that throws my theory out the window then, doesn't it ??

[eKatherine]

That's how I understand it, too. That all celiacs are gluten sensitive, but not all gluten sensitive people have celiac disease - celiac disease indicates intestinal damage.

To some extent it depends on who's making the definitions, but according to the most common means of diagnosing, a person with celiac is a gluten-intolerant person who happens to have been diagnosed with intestinal villi atrophy. It doesn't have to do with an allergic type reaction.