Questions About Celiac In Toddler

[jenndoss]

Ok, so I have some questions. I am probably jumping the gun because we haven't even seen the Dr yet but here goes. So Celiac disease is like an allergy except the response the body has? In an allergy there would be a histamine reaction and in Celiac the body attacks itself? Am I getting that right? Also, if blood work comes back positive for the antibodies does that mean Celiac? I mean are there other things that would cause that? And if so then what is the point of putting a child through a biopsy and making them sick again after going gluten free? Is there a benefit to being diagnosed for sure? What happens if we do not do the biopsy? Will the Dr ignore the condition? I just don't know why we would put ourselves or our children through the biopsy if it doesn't really make a difference. I just want to figure out a plan for us. Thanks for helping me understand this

[kbtoyssni]

So Celiac disease is like an allergy except the response the body has? In an allergy there would be a histamine reaction and in Celiac the body attacks itself? Am I getting that right?

-Celiac is actually an autoimmune disease not an allergy so the body starts attacking itself when it sees gluten. No histamine reaction. Many refer to celiac as an allergy, including myself when I talk to waiters because the term allergy is well understood, but it's not technically correct.

Also, if blood work comes back positive for the antibodies does that mean Celiac? I mean are there other things that would cause that?

-Yes, it means celiac. I've seen some studies showing that it's possible for casein (the protein in dairy) intolerance in dairy to cause a positive, but I think it's relatively rare. Wish I knew where I'd seen that study. If you get a positive, you can safely say it's celiac.

And if so then what is the point of putting a child through a biopsy and making them sick again after going gluten free? Is there a benefit to being diagnosed for sure? What happens if we do not do the biopsy? Will the Dr ignore the condition?

-The is a very individual decision. While a positive blood test means celiac, some people need that biopsy for personal reasons like needing it for motivation to stay on the diet. The biopsy is reasonable to do if a doctor is looking for conditions in addition to celiac. It may also be reasonable to do it if you can get in fairly soon after a positive blood test. If it's going to be a while, you might want to just go gluten-free and start healing. Note that in toddlers especially blood test and scope aren't that accurate so you can easily get a false negative for one or both tests. Depends on the doctor - some still consider the biopsy to be the "gold standard", some will diagnose based only on a positive dietary response.

[jenndoss]

Thank you for your response. I just want to have as much information as possible when I go in to the Dr.

[kbitts]

Jenn, could you share some of the problems your toddler is having? I have a 14 mo old grandson that has just been put on a gluten-free diet.

Here's our story:

He was a "cranky" baby, some would say colicky, and beginning around 8 months he began bouts with diarrhea. Stool cultured at that time showed several bacteria, including edwardsilia tarde, c. diff. and staph. From that point on, it was up and down with his diarrhea. It seemed he would only have a week or so of "good" stools, eating well with fussiness a bit subdued. He had good motor skills, but verbally didn't seem to be developing. His pediatrician did not seem concerned that he was small and not gaining weight well - we just chalked it up to his diarrhea problems.

His mother and I began researching and started suspecting celiac. Finally last month, February, he had 8 days of diarrhea - foul smelling with pasty consistency. He stopped eating, didn't even want the breast much, and wanted to be constantly held. Sleep was difficult and restless, fussing all night, tossing and turning in his sleep. His tummy would swell like a baloon - he looked like one of those starving poster kids. Legs thin and without much muscle - seemed to be indicative what we had read about celiac kids.

We demanded that the Pedi refer him to a GI specialist, which we found out was going to take a couple of months to get the appt! Although in December he had reached 20 #, by February he had dropped back to 19#. Failure to thrive was the dx from his Pedi.

We decided to take him to a Methodist Children's Hospital ER in San Antonio...a way to get with the GI specialist and besides, we felt the li'l guy needed some relief and we needed to find out what was wrong!

After five days in the hospital - IVs, tests, endoscopy, colonoscopy performed with biopsies - we took him home, cleared from a positive c.diff. culture with stools much more "normal" and eating well. Waited for all results.

When we brought him home from hospital, he began eating voraciously! We couldn't fill him up - but in the 10 days waiting for results, we started to see his decline. Belly still swelled - particularly at night; fussiness was increasing, appetite decreasing.

Follow up visit with Pedi GI last week - gliaden igg test showed borderline (11) but biopsy suggested some villi damage. Doc suggested a year of gluten-free, perhaps lactose-free (test not back yet) and monitor his progress. That's where we are now.

I keep him while daughter works and have begun the task of searching for appropriate foods and recipes - and cooking! With less than one week gluten-free, we are already seeing results. He is much happier - we comment we have a different child! His appetite is good, sometimes I worry he eats too much! His tummy is much smaller, and now soft. His stools are formed. He sleeps more restfully. Mom still breastfeeds, particularly at night, and she is diligently trying to stay gluten-free as well.

Challenge is cooking - the Health Food stores in our little town have some products, but very expensive. Basically, I've gone back to "old-time" cooking...something we've all gotten away from. I know then what is in what he is eating...not so from packaged, frozen or canned products.

Sorry this so long, but wanted to share our experiences in hopes it might shed light for others. Finding a definitive diagnosis of celiac in toddlers is sometimes not so easy - and thank goodness catching celiac, or a gluten sensitivity, at this stage lessens the intestinal damage that has occurred.

We feel we are on the right path with providing gluten-free foods.

You say you might be jumping the gun - but you're not. Do your research, and pose the right questions to the Dr. Symptoms can vary greatly, but the most important thing is apparently your motherly instincts are telling you something is wrong with your toddler...if your Dr. isn't sensitive to those instincts, change doctors - you need someone you can work with, no matter whether your child turns out to have celiac or not.

[jenndoss]

Sure, my just turned 2 year old suddenly dropped off the growth charts at 10 months old. Even then she didn't seem sick but we tried fortifying her diet with whole milk, butter, sour cream and pediasure everyday. Even with all that she still didn't have adequate weight gain. She has only gained four pounds since then and it has been a struggle. She is developmentally on track. I took her in at 18 months to an early intervention program and they told me her speech was delayed and she had poor muscle tone and very low fat stores.

Every time I searched the internet for answers I ignored celiac because it said symptoms were vomiting, diarrhea and tummy aches. She didn't have those. I was afraid she had Cystic Fibrosis. We tested her and it was negative. We did a complete blood work up with allergy screenings and found nothing other than slight dehdration and low iron.

I have 4 children and none of them have ever had any problems like this til now. At first my ped told me it was because I wasn't offering her enough foods (which I thought was ridiculous because I have 3 others and there is always plenty available.). She used to have frequent loose stools but that seems to have gotten better in the last 6 months. She also seems to have more sinus infections than my other children did which are always accompanied by a double ear infection. She has had 5 since she was born.

We see the Dr today so I am going to address celiac and see if she will order the test. If she refuses I will contact a gastoenterologist or an endocrinologist. I am really worried. I am afraid her height is being affected (it wasn't before) because she suddenly is so much shorter than all the other kids we know who are her age.

Thank you for sharing your story and any information you can give. I really appreciate it.

[jenndoss]

So we went to the Dr yesterday and she wrote up the orders for the blood test but said that when we did blood last time she tested for wheat allergy and since it came back negative then she most likely doesn't have it. Is that a correct statement? Would it show up under an allergy test if she had celiac?

Anyway, we are just waiting for the results. I will call tomorrow and see if they are in. Does a celiac panel take longer than regular blood work? I remember with the allergy test it took quite a bit longer for those then the regular CBC.

Thanks again!!

[jenndoss]

So, not sure if anyone is still on this topic but I wanted to update everyone anyway. So we did the celiac blood panel and it was very negative. The values were 1 and .6. But we did find out that she has a growth hormone deficiency and high neutrophils and low lymphocytes so I think that indicates an infection. But it was the same problems in her blood work from 6 months ago. So I am still waiting for the Dr. to call and let me know what all that means exactly. Thanks for all the support. I am planning on discussing with my husband on going gluten free anyway for a while and see how it does.