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Lindsay GFMom

Talked To Both Our Pediatrician & Naturopath

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Our 4.5yo son was dxed with both gluten & dairy intolerance per Enterolab. Also with both Celiac and gluten intolerant genes. But he currently has no symptoms other than dropping off in growth %. (He has no gut issues that we're aware of other than very occasional mention of tummy ache.)

Yesterday we met with both our pediatrician and our naturopath. To no surprise, we got very different responses.

Ped said:

The fact that he was steadily at 75-90% on the growth chart til age 12 months (when, coincidentally, he would have started gluten) and then dropped to 15% doesn't necessarily indicate a problem. Kids "find their number" over time. He acknowledged that it "could" indicate something, but he didn't think so. He'd never heard of Enterolab and couldn't interpret the results. He suggested a blood test for Celiac and other allergies. I showed him the 5 part Celiac test from Prometheus Lab, which he'd not heard of (he'd heard of 3 or 4 of the parts, but not 5...he was very interested.) He agreed to ship a blood test to Prometheus where we'll have the 5 part screening for Celiac done along with other major allergens. When I reminded him how traumatic this could potentially be (to draw blood--we're not doing this twice!), he agreed that for best possible results we should put him back on gluten for 2 weeks since we've been gluten-free for 2.5 weeks. (I emailed & called Prometheus about this and got 2 different answers. One guy said we should currently be on gluten; the other said that 2.5 weeks off wouldn't hurt. I'm going with the conservative answer.)

Ped said that if this test comes back negative (which I anticipate it will as he doesn't have active symptoms of Celiac disease), he would put him back on gluten and disregard anything to do with his growth chart. That's not going to happen.

As a side note, I believe that he's grown in the last 3 weeks. We keep marks on his door; the marks have changed in a month. Of course this is hard to prove since it's been a short time and obviously he can't have grown tons, but it does look different. At the doc's office, his height was up to 25%....earlier it was 15%.

Naturopath said:

No problem with doing the blood test. More info is good. He agreed with me that irregardless of the blood test results that we need to try to keep him off gluten for a year and see if his growth rate changes. We'll keep him off dairy, too, but in a year we can test again and he may be able to tolerate it if his gut heals adequately.

IF his Celiac blood test is negative, in a year we'll discuss the possibility of using enzymes to allow him to occasionally (think "birthday party once a year" type thing) have a gluten indulgence. But we agreed that because he is currently gluten intolerant (showing gut damage) and because he has the Celiac gene, he really needs to be gluten free for life.

It was eye opening to me to see the Enterolab results of an adult on a this site that almost matched our son's results exactly. (If anything, our son's results were slightly worse.) If my son continues to get gluten, eventually he could end up with very similar results. I guess I'm not willing to take that chance.

Enterolab responded to my question about whether their results indicate Celiac or not:

"The results do not indicate active Celiac Disease due to the fact that his fecal fat score was within normal range. If that score had been positive, your practitioner would have all the diagnostic evidence necessary to give a Celiac Diagnosis. Basically, his gluten sensitivity has not progressed to the point of full blown Celiac, but if you chose not to take him off gluten, this could happen. Digestive enzymes are helpful for some individuals, but sometimes they only help in the first 3 months or so of taking them. There are two different companies researching an enzyme specifically for gluten now, so perhaps we will see this helpful supplement in the near future. Dr. Fine does not recommend ever going back to a diet containing a food to which you have tested immunologically sensitive. This is because the level of severity can change and the symptoms can change the longer you are off of that food. You can even become asymptomatically sensitive, but you can still incur damage to the intestine even if you are not outwardly exhibiting symptoms."

*******

What this tell me is that the blood test for Celiac Disease is almost sure to come back negative. The pediatrician will declare all is well. The naturopath will agree with Dr. Fine at Enterolab. I do too, but it's harder to convince dh once he's heard the pediatrician! <_< We do agree (dh & I--not the ped!) that we must keep him off gluten for a year to see what happens with growth. After that I believe he must continue to remain off gluten. I cannot knowingly feed him something that could be long-term harmful.

I would be fascinated to know if anyone else has ever been dxed as gluten intolerant by Enterolab who didn't show any obvious gut symptoms. I don't know why anyone would chose to be tested if they didn't have symptoms, but there must be other people out there who are in the same boat as we are.

Thoughts on what we're doing? I hate the fact that we're putting him through a blood test that will likely turn out negative, but I'm consoling myself with the fact that it's probably a good idea to go ahead and do other allergy testing at the same time.

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Lindsay,

I'd like to comment, although I was diagnosed long before enterolab came on the scene. I'd like to point out that fecal fat content is only a reliable measure of celiac disease in people who are experiencing substantial intestinal damage, and is thus not necessarily a reliable method of testing in asymptomatic (or very young) celiacs. Under 3 years old, the blood test is not as reliable as it is in adults (I'm not sure of exact numbers). The current research, however, indicates that it is entirely possible to have celiac disease (ie a systemic autoimmune reaction to the presence of gluten in the diet or environment) WITHOUT intestinal damage. Granted, this is rare but I am one.

When I was diagnosed with celiac disease, there were no outward symptoms. I was healthy, a good body weight (even a little overweight), physically active, the tallest one in my family. My growth chart was so perfect it might have been an illustration from a textbook. I had regular bowel movements (though at 10 I had problems for a year or so predicting my bowel movements), no abdominal discomfort or bloating, no nausea or vomiting. There were just a few things that suggested something might be wrong: I slept, when allowed to, ten or twelve hours a day (doctors put it down to intermittent insommnia... sleep deficit). I had a stutter (which hardly anyone noticed because I hardly ever spoke without lining up the words and their constituant sounds in my head first). And I had acquired at fourteen the self-destructive habit of scratching myself until my skin bled. (Stress, said doctor after doctor after doctor. Take her to a shrink.). Thankfully, the last doctor to put me down as a highly stressed individual also decided to run every blood test he could think of to "stop you going to the naturopath, the faith healer, the chiropractor, and every other quack out there instead of the psychiatrist".

A week later his office called. Could they run one of the tests again? "We think the lab has made a mistake." So we go back, have more blood drawn, they run the test again, priority, and we go in the next day to find out the results. My IgA proteins have come back higher than they've ever seen before - a normal ratio is less than 25 to 1, the average celiac is diagnosed with a ratio less than 100 to 1. Mine was 2,500 to 1.

My advice is this - put your son through the blood test (I know it's traumatic, but if he IS celiac, and you catch it now, he won't suffer all his life from undiagnosed celiac disease) and do the allergy testing as well (it MIGHT be an allergy, instead of celiac.) Put your son back on gluten for AT LEAST three weeks before you do the test. . .it WILL make a difference. (The first test they ran, my numbers were as above, the second test happened after I had minor surgery when I hadn't eaten (gluten) for a week. . .my numbers on the second test were 2,450 to 1. . .enough difference, in smaller numbers, to change the diagnosis!). I suspect that if you do this, the test will come back positive.

The bottom line is this: if your son has genes for celiac disease, he probably has it. The fact that he is asymptomatic is neither here nor there. . .in fact, it is cause for greater concern because celiacs who are asymptomatic are much more likely to suffer neurological complications down the road. And trust me, you do NOT want to go through that. I had absolutely no idea how sick I was until I wasn't sick. . .it was just the way my body felt. Oh, and please make sure that your naturopath and your ped each know what you've been telling them and what they've said. . .it is important that all of the medical professionals in your son's life know about the others. Good doctors shouldn't care that you have second (or third or sixth) opinions.

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Guest cassidy

If you are going to keep him off gluten for a year regardless of what the blood test says, then I don't think you should do the blood test. If gluten really is causing him not to grow, then feeding it to him for 2 weeks and doing a blood test that will likely be negative doesn't seem like it is helpful. Also, if a negative blood test will make your husband more skeptical of trying the diet for a year, then that is even more reason not to do it.

I had celiac symptoms since I was a child but was only diagnosed last year. I went through tons of medical tests. I remember going to the hospital to have blood drawn. I was crying and upset and they strapped me down to a chair with like 6 people holding me to draw the blood. Now, when I have to get a blood test I break out in a sweat. I know it doesn't hurt but that one time did completely freak me out and I probably will forever be afraid of blood tests.

If you were going to use the blood test to determine what to do next, then I would think it would make sense. Since you have already decided, then why do it? My blood test was negative and although I go back and forth wanting a positive diagnosis, most of the time I realize that all that matters is that I feel well.

Good luck with the tough decision and getting your son healthy!

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