Help! Confused By Results

[rez]

I just got my son's results. He had and IgA for gluten of 17, and the cow's milk IgA was 14. I'm confused though because the ttg number was only 9. That indicated there was no autoimmune damage. He also has two copies of the gene DQ2/DQ8. The ttg number throws me off. It is 9, which is very close to 10, but I don't understand what the other elevated numbers mean w/out having the ttg above 10. Help please. Is this worth totally keeping him off all dairy and gluten?

[CarlaB]

Yes! You should keep him off dairy and gluten! Be thankful that at this point he's "only" reacting to them and not having an autoimmune reaction, yet. His autoimmune reaction is a "high" negative, so I'd bet if you kept him on gluten longer it would eventually be positive. He has celiac genes, so that would be pretty likely since he is reacting to gluten.

[rez]

Yes! You should keep him off dairy and gluten! Be thankful that at this point he's "only" reacting to them and not having an autoimmune reaction, yet. His autoimmune reaction is a "high" negative, so I'd bet if you kept him on gluten longer it would eventually be positive. He has celiac genes, so that would be pretty likely since he is reacting to gluten.

Okay, here are the exact results now that my husband printed them, I can be exact.

Fecal Antiglidian IgA 17

Fecal Antitissue Transglutaminase IgA 9

Fecal ant casein 14

HLA-DQB1 Allele 1 0201

HLA-DQB1 Allele 2 0201

Serologic equivalent HLA-DQ subtype 2,2

Thanks!

[CarlaB]

He's definately intolerant to gluten and casein. He just hasn't had an autoimmune reaction. With two celiac genes and an active intolerance, I would bet it's only a matter of time until that ttg rises. I bet it's on its way up now since it's so high for a negative.

I tried to ignore the casein part, but didn't get better until I got off it!

[rez]

He's definately intolerant to gluten and casein. He just hasn't had an autoimmune reaction. With two celiac genes and an active intolerance, I would bet it's only a matter of time until that ttg rises. I bet it's on its way up now since it's so high for a negative.

I tried to ignore the casein part, but didn't get better until I got off it!

Can you drink lactaid milk? Can you eat cheese or dairt moderately and take a lactaid? Thanks so much for your help.

[CarlaB]

Can you drink lactaid milk? Can you eat cheese or dairt moderately and take a lactaid? Thanks so much for your help.

No. A casein intolorance is like a gluten intolerance, it's permanent and all casein must be avoided.

Lactaid works for lactose intolerance, but not casein intolerance. Be careful because many "non-dairy" products actually have dairy! The allergen statement will say that the product contains milk.

Soy milk is okay. Vance's Dari-Free is also okay. There are also rice and almond milks available. I use coconut oil instead of butter.

[e&j0304]

Hey it's Shannon. I saw this post and thought it might be you. I found my kids results and I also thought I would mention that if you google "DQ2 and gluten intolerance" or "double DQ2 genes" you can find information about those particular genes. I quick typed in "DQ2 and mouth sores" and got some stuff that might be interesting you.

DQ2 is the most common gene that predisposes to celiac disesase although there are obviously others that do as well. As we talked about there are even people on here who are biopsy proven celiac with double DQ1, like my kiddo.

Anyway, happy hunting on the internet. I know you pretty well so far and I know you'll be researching!! :-)

Email me or call me this week.

[rez]

Hey it's Shannon. I saw this post and thought it might be you. I found my kids results and I also thought I would mention that if you google "DQ2 and gluten intolerance" or "double DQ2 genes" you can find information about those particular genes. I quick typed in "DQ2 and mouth sores" and got some stuff that might be interesting you.

DQ2 is the most common gene that predisposes to celiac disesase although there are obviously others that do as well. As we talked about there are even people on here who are biopsy proven celiac with double DQ1, like my kiddo.

Anyway, happy hunting on the internet. I know you pretty well so far and I know you'll be researching!! :-)

Email me or call me this week.

You know me too well. I think we are so much alike! Thanks for the links! I will call you later in the week. Now I'm even more overwhelmed because I had figured out the gluten, but the caesin is a whole other story. Thanks for all the advice and support! Kandi :)

[AndreaB]

Kandi,

My family is gluten, soy and dairy free. It can be done, just takes some getting used to. My oldest son (4 yrs) has the double dq2 also.

Just to repeat Carla, he needs to be gluten and casein (all dairy) free for life.

I have a recipe page I've started and I add in recipes from vegan cookbooks I have for other people to us. I'm not vegan anymore due to so many intolerances but like to use some of the recipes from them. It's on the first or second page in the recipes section. Look for my user name (AndreaB). If you have anything you'd like me to see if I have a recipe for, let me know.

[e&j0304]

You know me too well. I think we are so much alike! Thanks for the links! I will call you later in the week. Now I'm even more overwhelmed because I had figured out the gluten, but the caesin is a whole other story. Thanks for all the advice and support! Kandi :)

I'm sure that you're feeling VERY overwhelmed and that is so normal. I of course support you 100% and am always a phone call away if you ever need anything, including just someone to vent to who really understands!! I feel for you with the caesin. We aren't dealing with that but I know plenty of people on here are and hopefully they will be a good support for you.

Good luck and don't stay up on the internet all night! :-)

[CarlaB]

As we talked about there are even people on here who are biopsy proven celiac with double DQ1, like my kiddo.

So, your child is a double DQ1 and biopsy proven? I was wondering if this existed! Thanks for the confirmation!!! I had been gluten-free, then went on too short of a challenge for my biopsy ... so I'll never know for sure how bad it was before I went gluten-free, but up till now I thought it couldn't really be celiac, but only gluten intolerance.

[e&j0304]

So, your child is a double DQ1 and biopsy proven? I was wondering if this existed! Thanks for the confirmation!!! I had been gluten-free, then went on too short of a challenge for my biopsy ... so I'll never know for sure how bad it was before I went gluten-free, but up till now I thought it couldn't really be celiac, but only gluten intolerance.

No, sorry I guess I worded that wrong. My child does have double DQ1, but is NOT biopsy proven. There are however several people on here who ARE biopsy proven and DQ1. There is a definite possibility that you could have celiac although of course it doesn't make much difference what you have because the solution to the problem is the same for celiac or gluten intolerance. I think the statistics are that about 5% of people with biopsy proven celiac disease do not have the DQ2 or DQ8 genes and likey do have DQ1.

Sorry for the confusion!

Shannon

[kelliac]

Hi,

I'm a DQ1,1 (6,6) who tested 5 of 5 biopsies positive for celiac. My mother is DQ1,1 (5,6) and she is the same. So, yes, we are living proof that you can have villi damage and not have DQ2 or 8.

What I love best though is the enterolab testing since it is non-invasive. The swabs are great for everyone, especially testing of babies. The stool test is easy as well and what Dr. Fine says makes sense. The antibodies show up in the organ that is being affected first (intestines) and if, and when, it gets into the blood stream, the damage is just that much more.

I just read a recent recommendation that people should eat at least three weeks worth of gluten (6 servings a day) minimum prior to biopsies and that no less than 15 biopsies should be taken. Even then the experts say if you don't get the right spot there is a great chance that it will be a false negative. When people say there should be a better way, there is: enterolab.

[CarlaB]

Shannon, thank you for clearing that up. I agree that it doesn't matter which it is, but I have been curious if DQ1's ever have positive biopsies. I'm still just as gluten-free no matter which it is!

Kellliac, that's very interesting. I'm DQ1, 1 (6,6), too.

[saaa-wheat<3]

Hi,

I'm a DQ1,1 (6,6) who tested 5 of 5 biopsies positive for celiac. My mother is DQ1,1 (5,6) and she is the same. So, yes, we are living proof that you can have villi damage and not have DQ2 or 8.

What I love best though is the enterolab testing since it is non-invasive. The swabs are great for everyone, especially testing of babies. The stool test is easy as well and what Dr. Fine says makes sense. The antibodies show up in the organ that is being affected first (intestines) and if, and when, it gets into the blood stream, the damage is just that much more.

I just read a recent recommendation that people should eat at least three weeks worth of gluten (6 servings a day) minimum prior to biopsies and that no less than 15 biopsies should be taken. Even then the experts say if you don't get the right spot there is a great chance that it will be a false negative. When people say there should be a better way, there is: enterolab.

Does this mean that one does not have to eat gluten in order to have the enterolag test come back positive? How is this test performed and how much is it to have it done? Also, if one is tested for an IgA response, does one need to eat gluten in order for that test to be positive as well? I went to an allergist last year out of frustration and was tested for IgA on gluten, thinking for sure it would come back positive. I just about bawled when he told me that it was negative, but he was sympathetic and said that what I had was most likely a delayed response, which makes sense, because whenever I do react, I usually count back about 2-3 days to a suspected glutening.

[AndreaB]

You don't have to be eating gluten to be tested through enterolab. Need to test within the year though. I'm not familiar with IgA for allergy test....I had the IgE/IgG testing done where the IgE was the allergy and the IgG was the intolerance.

The full gluten package which includes malabsorption, ttg, gene and IgA (also possibly still dairy) is $369.

[rez]

Does this mean that one does not have to eat gluten in order to have the enterolag test come back positive? How is this test performed and how much is it to have it done? Also, if one is tested for an IgA response, does one need to eat gluten in order for that test to be positive as well? I went to an allergist last year out of frustration and was tested for IgA on gluten, thinking for sure it would come back positive. I just about bawled when he told me that it was negative, but he was sympathetic and said that what I had was most likely a delayed response, which makes sense, because whenever I do react, I usually count back about 2-3 days to a suspected glutening.

Wow! This thread has really taken off. This has been my home away from home the past few weeks. Thanks for all the feedback and suggestions. The enterolab will show an intolerance even if you have been off gluten for up to a year. I highly reccommend it. Also, I bought the yummiest bars today. They are nana's indulgence bars. They have chocolate and chocolate mint. They are totally allergen free and delicious. The only thing I need to manage now is my grocery bill!!!!! Holy moly!!!!!! Take care all!! Kandi

You don't have to be eating gluten to be tested through enterolab. Need to test within the year though. I'm not familiar with IgA for allergy test....I had the IgE/IgG testing done where the IgE was the allergy and the IgG was the intolerance.

The full gluten package which includes malabsorption, ttg, gene and IgA (also possibly still dairy) is $369.

How and where did you have the blood test done which clued you in on all your other food sensitivities? Thanks

[AndreaB]

How and where did you have the blood test done which clued you in on all your other food sensitivities? Thanks

My infant son broke out in eczema a little after 2 months. I talked to a friend who recommended a doctor in our area. I'm in SW Washington. Allergy testing led to enterolab testing. My doctor uses US Biotek. Don't know whether they test individuals. Their website is Open Original Shared Link if you want to check them out.