I got my Enterolab results and would appreciate any help in interpreting the findings:

Fecal Antigliadin IgA: 33 (normal <10)
Fecal Antitissue Transglutaminase IgA: 30 (normal <10)
Quantitative Microscopic Fecal Fat: 381 (normal <300)
Fecal Anti-casein IgA: 23 (normal <10)

HLA-DQBI Allele 1 0601
HLA-DQB1 Allele 2 0601
Serologic Equivalent: HLA-DQ 1,1 (subtype 6,6)

What does all this mean?

According to the report, I have "active dietary gluten sensitivity", an autoimmune reaction to Ttg secondary to gluten sensitivity, and gluten-induced small intestinal malabsorption/damage. I do not have the main celiac genes, but two copies of a gene that predisposes to gluten sensitivity. I also have an immunologic sensitivity to casein.

I'm confused: So am I right in that I do not have celiac and will never have it (=villous atrophy)? And if I will never have it, what are the risks associated with continuing to consume gluten (this is theoretical, I am going off gluten)? What research findings about celiac apply to those with gluten sensitivity "only"? And what would happen if I were to continue consuming casein? What sort of damage is associated with it?

I would appreciate any input from all you experienced and much wiser posters!

Well, people seem to associate Celiac with the HLA-DQ2 gene, and villous atrophy.

IMHO, it appears that you:

1) Certainly have gluten sensitivity, the IgA, TTG tests show you have an active immune response to gluten; celiac or not.

2) The malabsorbtion score you have is indicative of intestinal damage. Villous attrophy or not, I don't know I'm not a doc and I haven't seen any pics of your guts! But then, you have damage to your intestines that is preventing the absorbition of nutrients, hence the score of 381.

3) You need to stop being exposed to gluten! Further ingestion / contact with gluten will continue the immune response, and continue the damage to your body.

4) Two copies of the gluten gene mean that your predisposition and reaction are more severe.

5) Based on your Casien test, I would stop eating casein as well, for life. I believe that the associated symptoms are similiar to celiac. Mine are anyhow!

So, in a nutshell while noone would formally call you Celiac, you are in the same boat as most all of us. You cannot tolerate Gluten or Casien any longer.

i may be wrong here---but i think that i have heard that a problem with milk (casein) can cause some villi blunting. anyone know if this is right?
christine

Hi Michael, thanks for the detailed response.

So if I have an active immune response to gluten AND have associated intestinal damage what distinguishes me from someone with celiac?

The lack of celiac genes?

The KIND of intestinal damage? If it is not villous atrophy, then what is the nature of the damage?

Sorry for all the questions, just really trying to understand.

Thanks for confirming that I need to be casein free for life - I know it but it helps to have someone else say it as well!

Hi Chrissy, I have heard this as well that casein causes villous damage.

I'm not sure, you're beyone me on that one! I speculate that it is what the Doctor is willing to use for diagnosis. Some people are given a Celiac diagnosis based on one blood test out of the panel being positive, and a positive response to the gluten-free diet. Some doctors will only diagnose with positive panel, and intestinal biopsy being positive.

I only showed IgA positive on my serology, and my biopsies were neg. By reponse to the gluten-free diet was remarable. My GI Doc isn't willing to give me a dx though, he indicates that "You have some form of celiac sprue." and at times has corrected me by saying "I never said you have celiac sprue, but I suspect you have some form of it".

I went to Enterolab, and got positive Iga, positive ttg, positive casein, positive genetics (DQ2 and DQ3). I am going to see my GI doc today and will present these results to him. Perhaps he'll give me the dx today, time will tell.

If you want to get Enterolab testing, do you have to collect stool samples? For how long? What if you have "D"?

Yes, for anti-gliadin IgA, malabsorption, and anti-casein IgA you need stool samples. I *think* they only need about 1 cups worth. As far as D, they ask that you "seal" the sides of the container, and freeze the "contents" prior to shipping back to them.

A CUPS worth?!?! Good night!

Not your little occult blood smear then, is it...

Hi Michael, I'm really trying to get, in Enterolab terms, what the difference is between someone with gluten sensitivity and celiac - what is the difference between me and a person with celiac in terms of our biochemical makeup and/or reaction to gluten? Do let us know what your doctor has to say.

For Enterolab, you need one "complete" bowel movement, according to the enclosed instructions. I don't know how much you need in terms of volume/quantity but they do provide a rather large container.
I was really queasy about it but it turned out to be not so bad.

Hi lushgreen,

Here is my opinion on what the difference is between someone with gluten sensitivity and celiac - absolutely nothing! You still need to be gluten free for life, and you also need to be aware of the risks if you do eat gluten. You are just as suseptible to all the dangers to your body (other diseases, cancer, etc.) if you stay on gluten, since most of them are not actually cause by the gluten, but by the body getting weakened by the damage from gluten and the subsequent malnutrition. There are many people and doctors out there that will tell you that gluten sensitivity is less severe and you don't get intestinal damage from it. But there are just as many others that will tell you that they did have intestinal damage and were not Celiac, but gluten sensitive. In my family there are 5 of us. Two of us have one gluten intolerance gene and one Celiac gene. The other three have two gluten intolerance genes each. All of my three kids and I have serious problems with gluten and my middle son had the most intestinal damage and he has DQ1 & DQ3. My husband is also DQ1 & DQ3, but he will not accept that any of his persisting health issues are caused by gluten and he is not on the gluten-free diet.

One of my middle son's doctors (who is a rheumatologist/immunologist at a children's hospital) told me that they can not say you don't have Celiac just because you do not have DQ2 or DQ8. Researchers just haven't done enough genetic studies to say 100% that they have isolated ALL of the genes responsible for Celiac Disease. There are many people out there who have DQ1 or DQ3 and react quite badly to gluten. There are also people who are diagnosed as Celiac due to positive bloodtests and biopsy and they have never noticed any reaction at all. So you can not say that Celiac causes a worse reaction, since everyone is different.

The 4 of us in my family all react differently. Although I can tell you that the two of us with DQ2 are the only ones to get the DH (dermatitis herpetiformis) rash that is associated with Celiac Disease. And I believe it is DQ 1 or DQ3 that has been linked to neurological issues caused by gluten, but I can't recall which one. Having a double copy of any of the genes is supposed to cause a more severe reaction. My oldest boy has 2 copies of DQ3, but he has the least severe intestinal reaction. His tends to be mostly neurological/mood swings/behavior issues when he gets glutened. So maybe it is the DQ3 that is the neurolocal one...Although anyone can get the neurological symptoms from gluten, just some get it more severe.

Sorry I am rambling now, so I am going to stop.

Hi gf4life,

Your post makes things MUCH clearer - thank you. Wow, it seems like you have this figured out, so many family members with this

I too have heard (from a nutritionist that I saw) that not all the genes associated with celiac have yet been identified. Therefore, it is only possible to rule celiac IN through genetic testing, and never OUT. So from what I understand, Dr. Fine's saying that "you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8)" means that you don't have the celiac genes that have been identified so far, but you have these other two that are linked to gluten sensitivity (and he says this, how - the link to gluten sensitivity? Not sure how he came up with it).

That is very interesting about DQ1 or 3 being linked more to neurological rather than intestinal manifestations. Though I have GI issues (and I have yet to be "glutened"), I feel my most significant symptoms are neuropsychological, that is, having to do with cognitive processing, memory, concentration (=brain fog). Do you know what else has been found on DQ1?

I appreciated your "rambling"...

I think gf4life hit the nail right on the head. I will add no further to it.

Actually, my GI doc surprised me. He didn't know a whole lot about celiac until he met me, in fact he had only had one other patient with celiac before. He indicated to me that he would learn more about it.

Well, he sure did. He gave me a report from a recent study, and we discussed celiac for about 1/2 hour, and he really had done some good research. I was quite happy to hear that he now realizes that the occurence of celiac is quite high, and he has been testing many more people for celiac as a result of my case, and his recent research. (Well, I like to take some credit for my suffering!!) He even indicated he had tested over 15 people this week alone!!!!

After further discussion with him, and his review of my labwork from Enterolab, he agreed and gave me the "official" diagnosis I was looking for. So now it is in my charts if I ever need that evidence.

He even indicated that the best test was the response to the gluten-free diet! He had never said that before!!

My enterolab results were similar.. I also had elevated numbers for both gluten tests and the casein test.. I did have one celiac gene however..

on a separate note, I see that you were diagnosed reactive hypoglycemia from an OGTT... do you happen to know your numbers offhand throughout the testing period? I was diagnosed reactive hypoglycemia from a test in 2002 with a 75 g drink, but was also somewhat high at the 2 hour mark (159 which is in the impaired glucose tolerance range) in addition to being low at the 3 hour mark (50)... I also think I went very high at the first hour from a fasting level of 88 to 242 at 1 hour although there isn't much significance I've seen given to first hour results.. I'm still trying to sort out my blood sugar issues from my allergy issues..

and how do you manage to get enough protein for the hypoglycemia with being a vegetarian? for myself, especially with everything I'm avoiding now (soy,dairy, gluten, eggs, etc.), I doubt I could make it a day or 2 let alone more than that..

The facts are not all in with celiac disease. And all of the associated genes have not yet been identified. It's all somewhat murky, actually. Some people with the celiac and gluten sensitive genes never get it. They merely have the predisposition but perhaps they can go thru life and it will enver be triggered. Lucky them!

However, Dr. Fine emphasizes that with positive responses you should eliminate gluten (and casein as well if that is positive) from your diet. The identified celiacs are more prone to additional autoimmune reactions, apparently. Whether or not gluten sensitivity alone could also lead to additional autoimmune diseases and/or celiac disease itself is not clear. Gluten sensitivity can also lead to intestinal damage, as can casein sensitivity. There is an association of certain intestinal cancers with undiagnosed celiac disease. By ignoring the whole thing you take that risk of possible cancer down the road. The bottom line seems to be whether you are merely gluten sensitive, or whether you have active celiac disease, all roads still lead to Rome: don't eat gluten (and don't eat casein if you also test positive to casein). All of the negative results are simply not yet known. Having a predisposition is enough to say you shouldn't eat gluten--this is Dr. Fine's advice on the matter, and he studies this more than most doctors ever will so his opinion and advice are worth a lot. Also remember that a certain number of celiacs have NO observable symptoms, yet intestinal damage is being done, which could lead to the development of other autoimmune diseases and who knows what else.

Also remember that celiac disease is the ONE and ONLY autoimmune disease for which the external cause is actually known! (Gluten!).

With all the reading I've done, I've come to the conclusion that probably no humans should eat gluten, period. Some people adapt to it better with it than others, but given the evidence we now have, one could make the argument for eliminating gluten entirely from the human diet. The correlation of eating gluten with diabetes, rheumatoid arthritis, GERD, indigestion, and a ton of other conditions make one highly suspicious given the increase in consumption of gluten compared with the increase in all these diseases on the same time line. It looks pretty obvious, actually.

No. Collecting it and storing it and shipping made me feel squidgy for a couple of days.