Peduatrician Just Called...

[celiacmommy]

My DD pediatrician just called this evening. She went in last week for her 15 month appt and I asked the doctor to do bloodwork, because I just felt like something was wrong... more than just a fussy baby. My DD was dx with colic at 2 weeks. She's been extremely fussy and a momma's girl ever since. She's not content with anyone but me, I feel like I can never put her down, she cries all the time, she's not walking yet, she's sssoooo tiny. 10th % for height and not even on the charts for weight. She only weighs 16.9 lbs at 15 months. She was 8lbs 1oz when she was born.

Anyway, dr called saying he beleived she had celiac disease. Whatever level they tested shouldn't be above 11 and her's was over 100. I'm relieved that now I know what's wrong, but overwhelmed because I don't know where to go from here. What does all this mean. The pediatrician said he would be sending her to a specialist but I won't know anything more until Monday. What do I do in the meantime? Should I try to give her gluten-free food now? Should I wait until she sees the specialists? Will she have to have a biopsy to confirm the labs?

Sorry for all the questions, I'm just new to all of this and worried about my little girl.

Thanks,

Tammy

[TCA]

My son went through 2 negative biopsies before I knew any better. Tests on kids under 5 are most often inconclusive or false negative, but you don't get false positives. His blood work was also inconclusive, with very high IGg and only slightly elevated IgA. The diet trial has worked miracles. I'm not doctorphobic, and I don't think the biopsy is a big deal really, but if the bloodwork is already positive there is no need. How would a biopsy change your course of treatment? It sounds like you'd try the gluten-free diet regardless. Doctors might tell you she has to have the biopsy, but the decision is ultimately yours. Everyone has to make their own decisions, but I've been there and it wasn't worth it.

You might want to spend the weekend researching celiac and getting ready to start the diet. It will be much easier on you in the long run. If you PM me your e-mail address I can send you a list of foods that might be helpful. That way you can talk to the specialist on Monday and go from there. Just follow your gut on this. I know it's hard, but i've been through it with 2 kids and I wish I had done that more. I will get easier though!

[Guest nini]

since her blood work was positive, she absolutely has it. The specialists are more than likely going to try to tell you she needs the biopsy. This is OUTDATED information. She does not need the biopsy to confirm it since her bloodwork is so high. My personal opinion would be to get the pediatrician to just dx based on blood work and tell him you don't want to go to a specialist you just want to start her on the diet and start getting her well. If he sends you to a specialist she has to continue eating gluten and this will prolong the inevitable, that she will need to go on the diet. The biopsy is unreliable, especially in children, it can miss early stages of the disease and many Dr.s are unwilling to dx until they see full blown villous atrophy. IF your daughter's villi aren't already gone, why wait until it gets to that point?

I did not have a biopsy. My bloodwork was also very high and my Dr. said that because it was so high I absolutely had celiac and did not need a biopsy. This is what I reccommend for you. Take this into your own hands since you have the control over what you feed your daughter, and know that positive bloodwork is CONFIRMATION enough. The biopsy has been considered the gold standard of dx for far too long and in the process Drs have missed so many Celiac patients.

If they tell you they won't give a dx of Celiac based on bloodwork alone, tell them fine, you want a dx of Gluten Intolerance put on her charts. It's the same thing in regards to treatment.

My daughter's blood work was negative and she did not have a biopsy, but she also has Celiac and was dx'ed based on genetics (me) and positive dietary response. She was also very colicky, very tiny and had lots of health issues. It wasn't until she was 3 when I was finally dx'ed that we figured out what was going on with her. She is so much healthier on the gluten-free diet. Even healthier than most of her friends in school and her cousins. The gluten-free diet is very healthy when done right and I would suggest that your entire household go gluten-free to make it easier on you with preparing meals and to avoid cross contamination.

Good luck and feel free to ask any more questions. Many of us have had to take this into our own hands because the Dr.s couldn't find an answer, you are lucky that they found the answer so early.

[Tony'sMom]

My son's bloodwork was positive but we did the biopsy too. Honestly, we didn't know any different. We just did what the GI doc suggested. The biopsy was inconclusive and if I had to choose again I don't know if I would do it. My son has diabetes so it was a little more complicated for us. His sugar levels dropped like a rock during the procedure and it took us hours to get him stable. It wasn't life threatening but still was scary.

Good luck with your decision.

[tarnalberry]

I don't have a kid, so keep in mind that my advice may be somewhat biased, but here are my thoughts.

Yes, testing is rough on a kid. But that doesn't mean that we should skip unnecessary medical procedures. It just means we have to figure out if the biopsy is necessary.

You said one blood test came back positive. You don't say which one - you need to find out which test, and if they did more than just that test. A full panel consists of at least five tests - anti-gliandin IgG and IgA antibiodies, anti-tTg antibiodies, EMA, and total IgA antibiodies. The fact that one test (and I'm assuming that it was the anti-gliandin IgG or IgA) came back high does mean that she's reacting to gluten. But it doesn't mean your doctor is willing to give a diagnosis.

A positive, doctor-written diagnosis, from what I can tell, is more important for a child than an adult. Why? Because a child is going to be 'in the hands of others' much more than an adult. In elementary school, there may be issues over school lunches that are safe, craft supplies that aren't safe, snacks during class, reward treats, field trip lunches, and so on. In high school, there are issues with peer pressure, school nurses, and so on. In college, there's the cafeteria plans that many schools require, and attendance requirements that don't take illness into account unless it's documented. And none of that is counting the doubting-thomas family members who won't believe you and may try to slip her a cookie, or play-doh, unless they see a doctor's note or the test results themselves.

IF your doctor is willing to give her a positive diagnosis based on the blood tests and a positive dietary response to a gluten free diet, then you don't need a biopsy at all, period. That would be the best possible outcome. But there are reasons, mostly legal/procedural, I'm afraid, for the biopsy as well.

IF SHE MIGHT HAVE A BIOPSY, DO NOT START THE GLUTEN FREE DIET YET. YOU WILL ALTER THE TEST RESULTS.

But I would encourage you start off by asking the GI that you are being referred to if he/she would accept the blood test results and a positive result on the diet (taking metrics yourself - weight/height changes, bowel movement counts, etc.) for a diagnosis without having to do the biopsy if you are worried about the invasiveness of the procedure.

Below two years of age, the testing is less reliable, but that's not to say it's completely unreliable, particularly in bad cases. And it tends to be the blood tests that are the least reliable of the two in the under two-years set. So you're already past that concern.