Enterolab Results (again!)

[Guest greengirl]

I just posted that because my tTg test was negative, and IgA was positive, I understood that I had a gluten sensitivity but not Celiac. This is because I believed the tTg to be the indicator of intestinal damage (meaning flattened villi), correct? And the flattened villi is what differentiates Celiac and gluten sensitivity (even though I do have other intestinal damage - ulcerations). Am I totally off base here?

But then I was reading a post by Carole, I think, who said that the HLA DQ2 gene is a celiac gene (which I have 2 copies of). So do I have Celiac or gluten sensitivity?

Here are my results, for anyone who can help me out!

IgA 13.5 (normal<10)

tTg Iga 6 (normal<10)

Fecal fat score 84 (normal<300)

Casein antibody 7 (normal<10)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0201

Serologic Equivalent HLA-DQ 2,2 (Subtype 2,2)

Thanks very much!

[Rachel--24]

In my opinion you probably don'y have full blown Celiac *yet*. All that means is that you havent had major damage yet...tTG usually shows positive when there is already suficient damage. If you continued to consume gluten eventually the damage would occur. So you are catching it in the early stages...which is great!

[CMCM]

I just posted that because my tTg test was negative, and IgA was positive, I understood that I had a gluten sensitivity but not Celiac. This is because I believed the tTg to be the indicator of intestinal damage (meaning flattened villi), correct? And the flattened villi is what differentiates Celiac and gluten sensitivity (even though I do have other intestinal damage - ulcerations). Am I totally off base here?

But then I was reading a post by Carole, I think, who said that the HLA DQ2 gene is a celiac gene (which I have 2 copies of). So do I have Celiac or gluten sensitivity?

Here are my results, for anyone who can help me out!

IgA 13.5 (normal<10)

tTg Iga 6 (normal<10)

Fecal fat score 84 (normal<300)

Casein antibody 7 (normal<10)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0201

Serologic Equivalent HLA-DQ 2,2 (Subtype 2,2)

Thanks very much!

Your Enterolab results should have had the info I'm posting below. This stuff applies to your test too:

"The gluten sensitive, celiac genes are HLA-DQB1*0201 and HLA-DQB1*0302

(HLA-DQ2 and HLA-DQ8, respectively)."

Having two copies of a gluten sensitive or celiac gene,

means that each of your parents, and all of your children (if you have

them) will possess at least one copy of the gene. Two copies also means

there is an even stronger predisposition to gluten sensitivity than having

one gene and the resultant immunologic gluten sensitivity or celiac disease

may be more severe.

Interpretation of Fecal IgA to the Human Enzyme Tissue Transglutaminase:

Values greater than or equal to 10 Units indicate that the immune reaction

to gliadin has resulted in an autoimmune reaction to the human enzyme

tissue transglutaminase. It is this autoantibody that may be responsible

for the many autoimmune diseases associated with gluten sensitivity.

Interpretation of Quantitative Fecal Fat Microscopy: A fecal fat score

less than 300 indicates there is no malabsorbed dietary fat in stool

indicating that digestion and absorption of nutrients is normal.

_____

So all you seem to have going on is the IgA antibody reaction, but it doesn't look like you have the immune reaction as would be shown by the tTg part of the test...nice and low for you at this point. And the fecal fat score of 84 is low and well under the <300 normal number, so you don't have malabsorption of nutrients.

BUT....with two copies of the celiac gene, you have a stronger than average predisposition so you have a greater likelihood of developing celiac disease in the future and if you do develop it, your reactions could be more severe.

I don't remember if you said somewhere that your testing was prompted by symptoms, but especially if so, I'd suggest you email Enterolab and ask if their recommendation at this point is to remove gluten from your diet given the fact that you have TWO copies of the celiac genes and your IgA was above 10. I imagine Dr. Fine will say "Yes"...that you should stop eating gluten to prevent future problems.

[slpinsd]

I would say that you DEFINITELY have gluten sensitivity. My results are similar to yours. They say that the biopsy is the gold standard for diagnosis of Celiac. I think that even with a negative tTg, it IS still possible that you have Celiac in the early stages, esp. given your 2 copies of DQ2, which I also have. The stool/blood tests can never be 100% accurate. There are people with negative bloods, and positive biopsies. It is my impression that Enterolab cannot diagnose Celiac, but can diagnose gluten sensitivity and that the higher the tTg, the higher the likelihood is that you have Celiac. It also is possible that you are low IgA or IGA deficient, and this can skew all the test results. I had a positive IgG by blood and "mild flattening of the villi" was seen on the endoscopy, but the biopsy was negative, so I never know. I DO KNOW that my symptoms have greatly improved with a gluten-free diet. Have you had blood tests yet? Would you want to do that really quickly before going gluten-free?

[Guest greengirl]

Thank you all for your information. I have been symptomatic for years and in the last 6 months it's been horrible - constant diarrhea, abdominal pain, vomiting, anemia, and ulcerations and inflammation in my intestine found on biopsy and camera capsule endoscopy. I had gone gluten free a month before my test and felt amazingly better, so I know for SURE that I am gluten intolerant and will follow a gluten free diet for life.

I guess I'm just confused about the difference between gluten sensitivity and celiac. It seems that the only difference is the typical flattening of the villi which I don't seem to have. But if I have 2 copies of the celiac gene and all these symptoms, why don't I have the flattened villi? Don't get me wrong, I'm happy that the villi aren't damaged and that my numbers show I don't have malabsorption - I'm just trying to figure it all out.

Actually I just reread something on the enterolab site that does help:

"However, it seems for gluten sensitivity to result in celiac sprue (i.e., result in villous atrophy of small intestine), it requires at least 2 other genes also. Thus, not everyone with DQ2 or DQ8 get the villous atrophy of celiac disease. However, my hypothesis is that everyone with these genes will present gluten to the immune system for reaction, i.e., will be gluten sensitive." (from the Test Result Interpretation FAQ)

It doesn't say what these 2 other genes would have to be, though.

Christine

[slpinsd]

Did they find an infiltration of lymphocytes in the small intestine on your biopsy? That is the beginning stages of Celiac disease. You said your small intestine was inflamed, right? What do they think it's inflamed from?

[Guest greengirl]

Did they find an infiltration of lymphocytes in the small intestine on your biopsy? That is the beginning stages of Celiac disease. You said your small intestine was inflamed, right? What do they think it's inflamed from?

They found eosinophils, which are also white blood cells. I'm not sure what the difference is between these and lymphocytes.

[chrissy]

eosinophils cells indicate allergies.

christine

[CMCM]

I hadn't seen this quote before from Enterolab's site"

"However, it seems for gluten sensitivity to result in celiac sprue (i.e., result in villous atrophy of small intestine), it requires at least 2 other genes also. Thus, not everyone with DQ2 or DQ8 get the villous atrophy of celiac disease. However, my hypothesis is that everyone with these genes will present gluten to the immune system for reaction, i.e., will be gluten sensitive." (from the Test Result Interpretation FAQ)"

_____

This is interesting...I wonder what it means exactly....perhaps that those with celiac will have either the DQ2 or DQ8 gene, but there is some mysterious and as yet unidentified OTHER gene somewhere that further propels one into actual celiac disease??? Does this make sense?

There does seem to be a line that gets crossed somewhere. Dr. Fine has said that mere gluten sensitivity can cause symptoms just like celiac disease, that gluten sensitivity can damage the intestines, but that with active celiac disease, whatever causes that progression, seems to be worse and more far-reaching than just gluten sensitivity. He clearly did not want to minimize "just" having gluten sensitivity....he feels gluten should be eliminated from the diet in that case as well, whether you have celiac OR gluten sensitivity.

[aikiducky]

I read something similar by a Dutch doctor recently. He said that there probably were some people who would have all the celiac symptoms, and feel much better gluten free, but never develop complete flattening of the vili, and who would have a hard time getting an "official" diagnosis because of that.

Pauliina

[Guest greengirl]

There does seem to be a line that gets crossed somewhere. Dr. Fine has said that mere gluten sensitivity can cause symptoms just like celiac disease, that gluten sensitivity can damage the intestines, but that with active celiac disease, whatever causes that progression, seems to be worse and more far-reaching than just gluten sensitivity.

I don't know that gluten sensitivity without the flattened villi only damages the intestine. My gallbladder was diseased and only functioning at 7%, and I've had joint pain and anemia, along with all the abdominal and digestive issues. There really is so much to understand and I think there is a lot of research to be done still.

Carole, on a different vein, I noticed on another post that you had 2 sons (forgive me if I'm remembering wrong!). Because you have 2 copies of the genes I was wondering if you are putting them on a gluten free diet or if you've had them tested. I have 3 daughters, one of whom seems symptomatic (short stature at 11 yrs. old, headaches, stomachaches, and various other complaints). I think we've decided to put them all on a gluten free diet. It would be so hard to just have one daughter gluten free and the other 2 able to eat all their favorite foods in front of her. The test for all 3 is expensive, and if it's negative, then how often do I need to keep retesting? I don't want damage being done in the absence of symptoms. But then again, I don't want to deprive them if they never end up with gluten damage (or is it a certainty if you have the gene?). Do you have any thoughts on this?

Thanks,

Christine

[CMCM]

There does seem to be a line that gets crossed somewhere. Dr. Fine has said that mere gluten sensitivity can cause symptoms just like celiac disease, that gluten sensitivity can damage the intestines, but that with active celiac disease, whatever causes that progression, seems to be worse and more far-reaching than just gluten sensitivity.

I don't know that gluten sensitivity without the flattened villi only damages the intestine. My gallbladder was diseased and only functioning at 7%, and I've had joint pain and anemia, along with all the abdominal and digestive issues. There really is so much to understand and I think there is a lot of research to be done still.

Carole, on a different vein, I noticed on another post that you had 2 sons (forgive me if I'm remembering wrong!). Because you have 2 copies of the genes I was wondering if you are putting them on a gluten free diet or if you've had them tested. I have 3 daughters, one of whom seems symptomatic (short stature at 11 yrs. old, headaches, stomachaches, and various other complaints). I think we've decided to put them all on a gluten free diet. It would be so hard to just have one daughter gluten free and the other 2 able to eat all their favorite foods in front of her. The test for all 3 is expensive, and if it's negative, then how often do I need to keep retesting? I don't want damage being done in the absence of symptoms. But then again, I don't want to deprive them if they never end up with gluten damage (or is it a certainty if you have the gene?). Do you have any thoughts on this?

Thanks,

Christine

I have a daughter and a son. Neither of them has the digestive and other issues I had. HOWEVER....from all my reading I certainly see some suspicious things here and there. Nothing big yet, but things to watch. I think I'll eventually get the gene test for both of them and start there, just so they'll know whether or not they have the predisposition and therefore the possibility of something happening eventually. I don't want to be over-zealous with this and create a problem where there isn't one. But it's something to watch out for. My son is 20 and 6'3" so he certainly doesn't have short stature! But he's got a lot of allergies, including peanuts, so while celiac isn't an allergy, it could still be an issue for him. Testing is expensive, but I've decided that the $149 gene test is a good place to start. That's a definitive fact that won't change...either you have the genes or you don't. If it turns out you don't have them, then this will never be an issue (although personally, I still feel that even those people not at risk should at least minimize their gluten intake....I think the human digestive system wasn't designed to handle wheat gluten and it may be behind America's huge obestity/diabetes/heart disease/GERD problem.

So back to the kids.....If my kids test with the genes, then (since they are older) I'll really question them about various possible symptoms and have them read the books. My son is already interested in reading "Dangerous Grains". If they identify various things as suspicious, then maybe at a later point I'll pay for broader Enterolab testing, just to see if anything turns positive. Since your kids are younger, I guess you'd just have to approach it more slowly. But I think this is important. My mom was diagnosed celiac in 1969, and while she had always been told her children had a higher probability of inheriting it than others might, she (and therefore I as well) just didn't have all the information we have today, and I always thought celiac involved my mom's classic weight loss/violent ill reactions. I didn't react like she did, I see that now. I always attributed ALL my digestive problems to dairy (which I didn't know could cause damage) and then other "mystery" sensitivities which I could never quite figure out. I was NOT thinking gluten thru all these years. Surprisingly, my Enterolab malabsorption test was quite low (64 where <300 is normal). So after all these years of symptoms I don't appear to have malabsorption. I don't know at this point if that means I therefore would not have intestinal damage (and therefore not celiac, or what it means. Dr. Fine did say very clearly when I asked this that 1) Since my IgA and tTg tests were solidly positive, and since I had the 2 genes, I therefore should not eat gluten OR casein (since that was positive too). 2) That both gluten and casein could cause intestinal damage for me even in the absence of actual celiac. There appear to be some areas where no one understands exactly what triggers active celiac disease, this is all still a big mystery to doctors. They've identified associated genes which you apparently MUST have. But then there may be some as yet unidentified additional mystery genes that might also cause it—about 1% I think I read somewhere. And once you have the identified celiac gene, then there may be some secondary, and as yet totally unidentified genes that triggers the active celiac disease, and without this additional gene (whatever it is), you would suffer the symptoms of the sensitivity (which can be the same as with actual celiac) but you just wouldn't suffer the extreme damage and other systemic reactions as would happen with celiac disease. The bottom line is: THEY JUST DON'T KNOW ENOUGH YET! NO ONE CAN TELL US THE WHOLE STORY!

So it all comes down to you, and me, and all of us. We just have to get as much information as we can, ferrret out the experts and read what they have learned, and see with a healthy scepticism that the average doctor doesn't know much.

On another note.....my dad died of cancer in 1989. He was a bit overweight, had high blood pressure, got diabetes at about age 65, had a lot of sinus issues, was often unexplainably fatigued and various other issues. Two months ago when I got my gene test back, I had TWO genes....a celiac gene (most likely from my mom) and a gluten sensitive gene (SURPRISE!!) probably from my dad. SO......now I have to ask if there could be a possibility his various problems and his cancer could have been due to gluten sensitivity alone? Of course, we don't know what his 2nd gene was....could have been celiac too. His family was all Swedish, and there's a high incidence of celiac there. So he was/could have been a case of someone who was never diagnosed. And did he die because of it?? I wish we'd had the knowledge then we have now!

[CMCM]

I just thought of something else....when I showed up with the 2 genes, I asked Dr. Fine and he confirmed that one of my two genes would definitely go to my kids (since each parent contributes one of their own two genes). So I know before testing that my two kids got either my celiac or my gluten gene. The question is, which one did they get, and what kind of gene did they get from their Irish/Norwegian heritage dad? This is why I'm interested in the gene test for them. I just really want to know this. And it will be interesting to see what, if anything, my husband gave them. His mother has "supposed IBS" and psoriasis and lots of other things that have been connected to celiac, so I really wonder about her! (Norwegian side). His dad was schizophrenic and died 6 years ago of cancer, so I have to wonder about that now (Irish side).

There's a very interesting article about genes in the latest National Geographic (last month's issue I think). This article didn't discuss celiac, but it was focusing on how thru gene testing you can find out where your genes actually came from. There were some huge surprises for people in testing, and it's a fascinating article.

[Guest nini]

my opinion is that gluten intolerance is Celiac disease, just early stages of it. There are some people who have symptoms for years, but not full blown Celiac not until something happens to trigger it into full blown damage... aren't you lucky that this was found before your body was so severly damaged that you've developed other health issues.

my recommendation would be to go 100% gluten free to alleviate your symptoms and to prevent you from ever developing full blown celiac.

[Guest greengirl]

Carole,

I just typed in a reply and the whole thing was deleted when I hit a stray key by accident! Ugh!!

Anyway, thank you for your detailed response! Suffice it to say that I agree with everything you said. Your situation with your kids is a bit different since they're older and you can't enforce a gluten free diet with them! We've decided to be gluten free at home with my 3 daughters (age 11, 9, and 6) but I don't want to limit them when they go to other functions if they're not actively gluten intolerant, so we'll probably end up getting them all tested by enterolab. I'm waiting to see if the insurance covers my testing, because then the choice would be easy. My gastroenterologist said to give them all the blood test, but since mine was negative I don't really trust the results, and we've all been eating gluten free so that would affect the test.

I'll have to check out the gene article in National Geographic. My husband is also Norwegian, and his mother had many problems, mostly neurological, so I wouldn't be surprised if she had the gene, as well. My kids could have a double whammy like I got from my parents!

Christine

[Guest Robbin]

I agree with Nini. In the information material on the Enterolab site, Dr. Fine states in one section, "..gluten sensitivity underlies the development of celiac sprue." Also, in another section he states that "one can have gluten sensitivity damaging the intestine on a sub-microscopic level destroying function, or damaging other organs/tissues without having celiac sprue."

I have one gluten sensitivity gene, but even after 7 weeks gluten-free, my IgA was 27, and tIgA was 10. Until about a year ago when I started limiting carbs to control weight, I was severely anemic, had potassium levels so low my dr said it was like a starving person would have (but I am overweight), and low calcium levels. I had every symptom in the book. Severe, often bloody D, hair loss, sallow skin, joint pain, unexplained fevers, infertility and miscarriage, etc, etc,. Now I have neurological problems--distorted vision, dizziness, gait problems, muscle spasms. All because it was undiagnosed for so long. DO NOT LET THIS HAPPEN TO YOU. You know what you need to know to care for your health, please, please take care and do not eat gluten ever. Look at what a lot of us here has gone through and ask yourself, Is it worth losing YEARS of your life to sickness? If I can help someone prevent the hell I have been through over this, it would have not been a total waste of years for me.

[Guest greengirl]

Robbin,

Yes, I agree!! I am completely and strictly gluten free!! If I accidentally ingest gluten I know it immediately, and there better be a bathroom nearby! My concern is simply whether to enforce it (force it!) upon my children who have the celiac gene, but do not show symptoms. The only way to know if they're actively gluten intolerant is to do the testing. Right now, they are eating gluten free at home and no longer buying school lunches. I need to find out whether my insurance covers the enterolab testing - for 3 of them to do the whole panel it's expensive, esp. if they're negative now and we have to retest every year!

Christine

[Guest Robbin]

I am so glad you are taking it serious, I thought from the initial post that you may go off the gluten-free "path". I've been getting too panic-stricken lately over this with people. I guess I am used to dealing with argumentative people so long, I get carried away! I just submitted my enterolab to my insurance, so I hope they cover it, as I am wanting to get my kids tested too. Take care!

[Guest Robbin]

[quote name='CMCM' date='Mar 11 But then there may be some as yet unidentified additional mystery genes that might also cause it—about 1% I think I read somewhere. And once you have the identified celiac gene, then there may be some secondary, and as yet totally unidentified genes that triggers the active celiac disease, and without this additional gene (whatever it is), you would suffer the symptoms of the sensitivity (which can be the same as with actual celiac) but you just wouldn't suffer the extreme damage and other systemic reactions as would happen with celiac disease. The bottom line is: THEY JUST DON'T KNOW ENOUGH YET! NO ONE CAN TELL US THE WHOLE STORY!

Carole, I apparently have the "mystery gene" as I am in the 1% category. I have the elevated AIgA, tIgA, and have one gluten intolerance gene. I have all the classic symptoms and neurological problems, so, lucky me, huh? The only "unclassical symptom" I have is weight gain. Since being gluten-free, it has just seemed to melt off. (A very bright spot in this!)

Your posts are always so well-thought out and helpful--Thank you so much for all your help, not only to me, but to others here.