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Comparing 2 Sons' Results From Enterolab

Pacer

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Pacer Rookie
Pacer
Posted

Hello all - I am going to call Enterolab as soon as they are open on Texas time. In the meantime - comments please.

My husband is a confirmed , symptomatic, celiac on a lifetime gluten-free diet. (had biopsy)

Recently, after some GI symptoms we had our younger son (6) tested by EnteroLabs. His results were extremely high numbers and ++ gene:

Fecal Antigliadin IgA 142 (normal range <10 units). HLA -Dq2, 1 (Subtype 2, 5)

Perhaps more importantly, his symptoms stopped immediately when he was put on a gluten-free diet.

Based on that, we decided to test our older son (8) who is asymptomatic. The only possible symptom he presents, would be the fact that he is very, very skinny.

He also tested ++ but much less so.

Fecal Antigliadin IgA 14 (normal range <10 units) HLA Dq 2,1 (subtype 2, 5).

Any comments on the above values? He seems so very close to being normal. I need some real motivation to put him on gluten-free as well. Thanks for reading. HEIDI

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holiday16 Enthusiast
holiday16
Posted

I asked my NP about the signifigance of the numbers and she said how high they are is not the issue because some people produce more antibodies than others, but what matters is that you have a positive test result which means you are showing a reaction to gluten.

Mine came back at only an 11 yet I was very sick for almost 8 years with several issues many of which were neurological. I've been gluten free since about last November and I've been amazed at the difference. If I have gluten on accident I've found it takes a good 3 weeks to really start to feel better again. On the other hand my brother who tested higher than me has less symptoms and the same was true with my dad.

To put it in perspective at one point I was so sick that looking back on it my husband said it was like I went to bed for a year and didn't get up. The first couple days of a gluten reaction will put me right back in that phase.

Ursa Major Collaborator
Ursa Major
Posted

It is true, positive is positive, no matter how high the positive is. Your sons both have the celiac disease gene and antibodies. Meaning, they both need to be on a gluten-free diet. I suggest you also have their levels of essential nutrients checked, as especially your older son may be suffering from malnutrition. My guess is that he is so skinny because his intestines aren't absorbing nutrients.

You need to have the levels of ferretin (iron), magnesium, calcium, vitamin D, vitamin K, and vitamins B6 and B12 checked, as those are notoriously low in people with undiagnosed celiac disease. And then supplement based on those test results.

In the meantime, make sure they are getting a high quality multivitamin. Others here with children who have celiac disease can let you know specific brands to use, that are gluten-free.

Pacer Rookie
Pacer
Posted
  • Author

Thanks for your input. How does one go about testing for nutrients? Perhaps it would be a good idea just to do the vites anyway. They are important under any situation.

I guess it's true - "normal" people really aren't that skinny. My husband is/was super skinny, but then again, he spent 38 years as an un-DX'd celiac.

I am trying to figure out a way to break the news to him. Wondering if I should wait til the weekend, sit down with the whole family, or whether I should just tell him and get it over with. I know the news is going to make my little guy feel a lot better to not be the only one, but it is going to come as a shock to my older one who doesn't have any tangible symptoms. At least with my younger guy, he woudl throw up and get cramps if he ate gluten, so he had 'proof' that he needs to be gluten-free. sigh.

HC

holiday16 Enthusiast
holiday16
Posted

If it helps any we're in a similar situation. I was diagnosed through Enterolab last year after having a negative blood tests three years ago. We noticed our youngest daughter was doing better on the gluten free diet. She'd been having stomach pains that we had started taking her to the Dr. for, but gluten free they went away. If she had gluten they came back. Based on that she's been diagnosed. Both the NP and Dr. I see were in agreement based on symptoms that she does not need any testing because it's so obvious that's the problem.

My oldest daughter is a different case. We suspected a gluten issue, but the symptoms are not so clear. She's been gluten free off and on for the last few months and based on that we're pretty sure it's an issue. When she has gluten she gets a horrible attitude, is tired, depressed, lacks self control etc. We considered putting her back on gluten to have her tested, but when I realized I didn't think I could stand dealing with her for that long while she's on it I concluded that really should be evidence enough! She's been gluten free for a while now and she's so much more pleasant and is doing better overall.

It has been harder with the older one since hers is so different, but at this point she is following it and doing a good job. I think that as time goes on and she has been gluten free and then has gluten she does see the difference which helps. Since she's 13 I had to try and make it her decision as much as possible or she would never have followed it when I wasn't around. She had a few cravings so on occasion I've let her "test" how she feels on gluten and she eats the foods she was craving. It's not something I'd recommend, but it worked well for us since it helped confirm what we thought and reinforced it with her.

As for blood tests just take a list of what you want tested and you should be able to get blood draws for those. With the Vitamin D make sure to ask for the 25 hydroxy vitamin D test as it's the most accurate. Also, even though a lab may say it's in the normal range and you're not technically deficient you may need more. When I was tested I was 21 on a scale of 20-100 ng/ml which is considered normal, but I felt awful until I got my levels back up. This was before I was diagnosed with the gluten issue. I just had my D retested and it came back at 39 which the NP said a few months ago she would have said that was fine, but with revisions they're finding it really should be around 70 or so.

The interesting thing is it was the low vitamin D that brought everything to a head for me and led to me finally getting diagnosed.

Pacer Rookie
Pacer
Posted
  • Author

Holiday, that sounds VERY familiar.

It is so hard to tell an asymptomatic kid their favorite foods are being taken away. it's like a punishment for no reason. I am trying to come up with the right time to tell my older son. Today on the way to school he asked me if we could do something special over the weekend - go out to the bagel place and sit down and have a warm bagel. sigh

(Meanwhile what I'd planned for the weekend was to have a family meeting and tell the kids our household is going gluten-free indefinitely....)

It was awful of me, but we were early for school today and i said "stop right there -- we can't have a bagel tomorrow", but I bought him one today :-/ We live in NYC which is pretty much the epicenter of gourmet bagel making.

He is a VERY sensitive boy, and I think deep down he knows the whip is coming down. He thinks we are awaiting Enterolab results. He begged me to tell him as soon as the results came in, but I just can't do it during the school week. He is going to be really upset.

My heart is really not in making him go gluten-free. His EnteroLab score of 14...the lack of symptoms...the fact that we are vegetarians (I have mentioned all this stuff before, sorry) -- I SO wish it could go away.

The only possible upside - perhaps certain things can come more easily to my son once he's gluten-free. He goes to 3rd grade at a gifted program, but his spelling is worse than his Kindergarten brother's. It always baffled me how much he struggles with spelling. Also, he is very skinny and not able to put forth bursts of physical power like bigger kids. He is quite economical and joins me for runs of several miles, but he's always "it" in tag. If there could be some visible payoff to being gluten-free -- better concentration or more strength -- we'd all be able to get behind it a lot more.

In other news, we are planning to attend a celiac fundraising event next weekend. Thanks for reading. HEIDI

chrissy Collaborator
chrissy
Posted

does your son have a positive Ttg?

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Pacer Rookie
Pacer
Posted
  • Author
does your son have a positive Ttg?

I'm sorry -- what is TTG? Is there another word for it? Thanks HEIDI

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