Dairy-Free, Too? Really? Lab Interpretation Help Needed

[Liza Lee]

Hi all. I'm new here. I did testing with Enterolabs and here's what they sent me.

A) Gluten Sensitivity Stool and Gene Panel Complete

Fecal Anti-gliadin IgA: 62 Units ( Normal Range is less than 10 Units):

Fecal Anti-tissue Transglutaminase IgA: 32 Units (Normal Range is less than 10 Units):

Quantitative Microscopic Fecal Fat Score: 459 Units (Normal Range is less than 300 Units):

Fecal Anti-casein (cow's milk) IgA: 21 Units (Normal Range is less than 10 Units):

HLA-DQB1 Molecular analysis, Allele 1: 0302

HLA-DQB1 Molecular analysis, Allele 2: 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

If I understand this correctly, I'm having a strong reaction to gluten, I'm having malabsorption problems, and I carry DQ8 which is a strong marker for celiac disease. But, I'm reacting to casein, too? Do I really have to drop dairy products? Do you think that after a couple of years gluten free that I could go back on dairy?

Also, do you have any insight into the genetic information? I told my brother about it and he's freaking out a bit. Also, I have five kids. What about them?

Help! I think I'm freaking out a little bit, too!

[mushroom]

Hi, Liza Lee, and welcome to the forum.

I am no expert on test results, especially the genetic part, but you definitely have problems with gluten and your fecal fat score would indicate you are not processing your food properly. You may or not be celiac, but you should not be eating gluten.

As far as the casein, I had fecal testing done by a different company which indicated that I was casein and egg intolerant. I reluctantly cut out those from my diet and added them back in three weeks later with absolutely no change, so those for me were not accurate. But I was (had been for many years) lactose intolerant. You might try just cutting out milk, cream, ice cream and soft cheeses and see what happens. Or you could cut out all casein and then after a while challenge the lactose and find out for yourself what difference it makes. Most often, with casein intolerance it is permanent.

It is not clear to me whether or not you have been gluten free, and if not why you chose Enterolab rather than blood testing, since the blood testing can give a better answer regarding celiac and the diagnosis can be confirmed with biopsy. Of course if you have been off gluten, then the blood testing is out.

Your kids should definitely be tested for celiac because if you have it there is the strong probability that one or more of your kids do too. But it's nothing to freak out about. We all manage to live pretty normal lives although it does take a bit of extra work to track down and eliminate all the gluten. A short read of some of the threads here will get you started in that direction. Do come back and ask any specific questions you may have, and I hope one of our gene experts responds regarding your DQ 3,1, subtype 8,5.

[i-geek]

This might only be a temporary thing. I know there were a lot of foods that gave me problems prior to going gluten-free. Dairy was one of them (along with cabbage, broccoli, bell peppers, alcohol- all of which I can eat with no problems now).

I haven't had Enterolab testing done, but before I went gluten-free, it got to the point where I couldn't eat any dairy without problems. I'm 3 months gluten-free now, my gut is healing nicely, and I enjoyed a whole milk yogurt with lunch and cheese on my pizza last night. I've also eaten panna cotta (essentially, flavored cream jello) at restaurants twice with minimal problems. I plan to whip real cream to go with my gluten-free cake for Easter dessert and to enjoy it thoroughly.

[Liza Lee]

Hi, Liza Lee, and welcome to the forum.

It is not clear to me whether or not you have been gluten free, and if not why you chose Enterolab rather than blood testing, since the blood testing can give a better answer regarding celiac and the diagnosis can be confirmed with biopsy. Of course if you have been off gluten, then the blood testing is out.

Your kids should definitely be tested for celiac because if you have it there is the strong probability that one or more of your kids do too.

Thanks for the welcome!

I'm afraid I did everything backwards. I had an acquaintance who had recently been diagnosed with celiac disease and she was asking questions on a Mom's forum about eating gluten free. Something just clicked in my head and I decided on a whim that I should try going gluten free, too.

I've been struggling with lots of vague (and not-so-vague) symptoms for several years. I've been diagnosed with arthritis, restless leg syndrome, carpel tunnel, depression, and ADHD. I've had muscle aches, mouth sores, and brain fog. I've been told that I have a "touch" of IBS. I've wondered about fibromyalgia, or chronic fatigue, or ??? Gluten intolerance was just one more on my list of possibilities.

I started eating gluten free and also started googling for more information. The next day I saw information about the Enterolab test and ordered it, and kept on researching and not eating gluten. After three days without gluten I felt like a different person, so I just KNEW it had to be all in my head. I ate pizza for dinner that night and spent most of the next day in bed. That's when I figured it wasn't all in my head.

By the time I received the kit for samples, I had learned that: A. Some docs/people discount those results because the work hasn't been published, and B. I probably should have kept eating gluten and gone to see my doc in the first place. Since I had already spent the money and since I really didn't want to go back to gluten I went ahead with the testing.

This might only be a temporary thing. I know there were a lot of foods that gave me problems prior to going gluten-free. Dairy was one of them (along with cabbage, broccoli, bell peppers, alcohol- all of which I can eat with no problems now).

Oooh, that's so encouraging. I really like my cream in my coffee. OTOH, if being casein free for the rest of my life is what I need to be healthy, so be it.

Now my next question is this - I've been gluten free for less than a month. One time early on I deliberately ate gluten and I've been accidentally glutened at least twice. If I go to my PCP and get testing the traditional way, will any of this show up? Or have I been off gluten too long? As soon as I got the Enterolab results, I made an appointment to see my doctor. Exactly which tests do I need to have to get a diagnosis?

Thanks for the help and encouragement!

[mushroom]

Now my next question is this - I've been gluten free for less than a month. One time early on I deliberately ate gluten and I've been accidentally glutened at least twice. If I go to my PCP and get testing the traditional way, will any of this show up? Or have I been off gluten too long? As soon as I got the Enterolab results, I made an appointment to see my doctor. Exactly which tests do I need to have to get a diagnosis?

After several weeks of gluten free eating I am afraid that any blood testing is likely to be negative, as well as the biopsy. It is recommended to keep eating gluten right up to the last day of testing because the antibodies disappear quite quickly from the bloodstream and the gut starts to heal. Small amounts of gluten off and on, while interfering with the healing, will not make enough difference for the test. You would have to go back on gluten for at least two months to get an accurate test, some would say three months, and I doubt you would want to do that. However, FYI, the celiac panel consists of:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

[Liza Lee]

After several weeks of gluten free eating I am afraid that any blood testing is likely to be negative, as well as the biopsy.

Good news! My doc said that having such strong improvements on the gluten-free diet was good enough for him, he called it a "presumptive diagnosis" and said he didn't want to bother with testing. I really didn't want to go back on gluten, because it makes me sooo sick.

He also said that celiac disease is the most common GI problem he sees. Even better, he had a visiting medical student in the office, so SHE learned something, too.

I love my doctor!