Whole Family Took Enterolab Tests - Overwhelmed - Help!

[gfreston]

I would be so grateful for some help interpreting my family's Entero lab results.

I had a positive blood test for gluten intolerance 4 years ago, so I have been gluten-free since then (although lately there have been some cross-contamination issues). I decided to have my whole family tested last month so that I could test out some suspicions of mine. Here are the results on my kids and husband:

Husband:

Fecal Anti-gliadin IgA 6 Units (Normal Range <10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Question 1: What is an 11? Does he really need to eliminate gluten? He carries the genetic markers for celiac (02) and one for gluten sensitivity accord. to Dr. Fine (06) but his results seem iffy to me. (BTW - he is very skinny and has to overeat to the point of being uncomfortable to gain weight.)

Son #1:

Fecal Anti-gliadin IgA 20 Units (Normal Range <10 Units)

Fecal Anti-tissue Transglutaminase IgA 16 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

HLA-DQB1 Molecular analysis, Allele 1 0602

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

Question 2: It looks like Son#1 cannot have celiac disease b/c he doesn't carry the gene. However he is clearly reacting to gluten (and has two copies of a gluten sensitivity genetic marker )- but the numbers aren't terribly high. Would reducing gluten help him or does he absolutely need to go gluten-free? (I think I know the answer but I'm holding on to some wishful thinking here.)

Son #2:

Fecal Anti-gliadin IgA 44 Units (Normal Range <10 Units)

Fecal Anti-tissue Transglutaminase IgA 28 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Question 3: He has both the genetic marker for celiac and is gluten sensitive. Looks like a no brainer to me, but thoughts on getting the biopsy done anyway...

Question 4: My test indicated a Fecal Fat score of 917 units (remember the cross-contamination), but the kids and hubby had normal scores. What does this mean - especially for the kids? Are they reacting to gluten but still absorbing fats and nutrients normally?

Now for the bonus question:

The boys and I all indicated a sensitivity to casein as well (Darn that Dr. Fine for including it in the complete panel!). I scored 37, Son#1 scored 14, Son#2 scored 16 with normal range <10. If you know anything about this please tell me if this means we have to *eliminate* all casein from the diet or whether we can *cut back*. Dr. Fine's report says to eliminate it, but that wishful thinking won't give up!

Thank you so much in advance! I need to be armed with all the facts before I throw out every scrap of gluten (and maybe casein) in my house and begin a mandatory gluten-free (cf) family diet. Mutiny is certain to ensue and I need some good ammunition!

[lizard00]

Husband:

Fecal Anti-gliadin IgA 6 Units (Normal Range <10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Question 1: What is an 11? Does he really need to eliminate gluten? He carries the genetic markers for celiac (02) and one for gluten sensitivity accord. to Dr. Fine (06) but his results seem iffy to me. (BTW - he is very skinny and has to overeat to the point of being uncomfortable to gain weight.)

According to the results, your husband is reacting to gluten, while carrying the genetic marker DQ2,2 which puts him in an immediate risk. There are also diagnosed DQ1s here and DQ1 is becoming more and more associated with celiacs. The skinny and overeating part sound like celiac symptoms. Is he willing to do a trial? Or he can go to the doc and get a panel done and see what the results are.

Question 2: It looks like Son#1 cannot have celiac disease b/c he doesn't carry the gene. However he is clearly reacting to gluten (and has two copies of a gluten sensitivity genetic marker )- but the numbers aren't terribly high. Would reducing gluten help him or does he absolutely need to go gluten-free? (I think I know the answer but I'm holding on to some wishful thinking here.)

Reference back to the DQ1. It's a possibility he can still have celiac.

Question 3: He has both the genetic marker for celiac and is gluten sensitive. Looks like a no brainer to me, but thoughts on getting the biopsy done anyway...

I'm not sure you'll get a GI who will order an EGD without a celiac panel. If they'll recommend a biopsy, it's your decision to make. You have to take into account the age of the child, risk factors, etc. It's definitely got its pros and cons, and should be something that you decide after talking to a doctor.

Now for the bonus question:

The boys and I all indicated a sensitivity to casein as well (Darn that Dr. Fine for including it in the complete panel!). I scored 37, Son#1 scored 14, Son#2 scored 16 with normal range <10. If you know anything about this please tell me if this means we have to *eliminate* all casein from the diet or whether we can *cut back*. Dr. Fine's report says to eliminate it, but that wishful thinking won't give up!

If you're reacting to casein, then you should consider eliminating it completely. I have a very mild egg allergy, but if I eat it, my upper GI tract is inflammed for hours. If I eliminate it completely, the inflammation goes down in my body as well. If you react to something, it's probably best to do away with it all together.

[lizard00]

Here is an article that is a little more detailed about genetics and their role in celiac/gluten sensitivity.

https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html

[gfreston]

are.

Thank you so much for your response. My husband had a blood panel done that came back negative. That's why he's not convinced with the score of 11. But I think I can convince him to go on a 1 month trial, especially since we'll be taking all gluten out of the house.

I know it's best to do away with the casein all together - but my 5 and 8 yr old are going to have a different opinion about that (especially since gluten is also being eliminated). I just don't want to put them through such a complete radical change of their diet until I know that it is really important to do so (regarding the casein). Milk is a pretty major staple of our diet. This will not just be a dietary change for them, but a pretty major emotional/social crisis. Especially when they don't see that they have any obvious negative symptoms. (I see some possible symptoms, but not anything really major.) They'll just see it as their mom ordering these dumb tests and now they can't eat anything normal anymore!

Thanks for listening!

[Billygean]

A milk intolerance is not like celiac. It won't, as far as I know, damage your intestines. I gave up milk and then obviously stopped producing the enzymes and it took ages to reintroduce it properly, and I don't think I've gained anything from the whole experience!

[chb]

My tests also came back showing I needed to eliminate casein. It was a tough blow. I had already been gluten free for 2 months and still felt pretty rotten. It was only when I eliminated the milk, that I really started to feel better. Everyone is different, I suppose you could just do the gluten first and then once everyone has adjusted, drop out the milk to see what difference it makes.

Gluten or casein sensitivities are not only about your intestines. I had no GI symptoms at all. If you are making antibodies against gluten or casein, your body will be reacting to it in some way and your digestive system is only one of the system's in your body.

[MaryJones2]

There are two sides to this. If you do the gluten-free thing for a few months and then remove dairy for a few weeks chances are you'll find out quickly who has a problem and who doesn't. The other side is that dairy is really hard to digest and can delay healing. Many people remove dairy initially and add it back in after several months. I think it really depends on what works for you and your family (and their individual bodies). It always takes a while to get all the kinks worked out.

[gfreston]

There are two sides to this. If you do the gluten-free thing for a few months and then remove dairy for a few weeks chances are you'll find out quickly who has a problem and who doesn't. The other side is that dairy is really hard to digest and can delay healing. Many people remove dairy initially and add it back in after several months. I think it really depends on what works for you and your family (and their individual bodies). It always takes a while to get all the kinks worked out.

Yes, the question is - go all out at first or remove one then the other. I'm really torn. On the one hand, I think "peeling off the band-aid quickly" might be best. Everyone is going to be upset anyway - might as well go all the way. Then in a few months, add back in some dairy and see how it goes. But those first couple weeks are going to be rough - and I won't know whether it's the dairy or the gluten removal causing the relief of symptoms.

The other plan would be to go gluten free first and just reduce our dairy consumption gradually. (I've already started going dairy free.) Then after a few months do a dairy-free trial. I think I'm leaning toward this approach. I think the family will "stomach" it better.

Thanks to everyone for your suggestions and input!

[ravenwoodglass]

The other plan would be to go gluten free first and just reduce our dairy consumption gradually. (I've already started going dairy free.) Then after a few months do a dairy-free trial. I think I'm leaning toward this approach. I think the family will "stomach" it better.

Thanks to everyone for your suggestions and input!

That sounds like a good plan. You might want to slowly introduce one of the alternative milks. Maybe use a gluten-free rice milk (or other alternative) on cereal and in cooking to start. Then mix rice milk 1/2 and 1/2 with regular milk and slowly increase the amount of the rice until they are dairy free. When I first went dairy free I used vanilla hemp or almond milk for cereal and baking but got the chocolate for drinking. I needed the protein then but now I use Wegmans rice milk. It might make the adjustment easier on the family.