To Test Or Not To Test?

[Gosiasamosia708]

I have a 16-month old daughter who may or may not have celiac disease and I am asking for your input. Here is my story:

My husband has Celiac. He was very sick as an infant and spent many months in the hospital. He stayed on the gluten-free diet until 8 or 9 years old. I knew nothing about this disease until we had our daughter. When she was born I started researching this disease and found out that it’s genetic and that you have it for life. It’s a separate story to convince my husband of this – he claims he’s fine. But this is about my daughter:

She seems fine. For the first year of her life she stayed at 50 percentile in weight and height. But she was extremely fussy and she did not eat well. Plus her stools were always dark green.

She is 16 months now. At our last doctor’s visit the doctor told me to make sure she gains more weight – she is lower than the 5th percentile now!!! That scared me. Plus she poops three times a day and it is always watery – kind of like diarrhea, now the color is light green.

For the past couple of days she’s been on a “food strike”. She only wants to drink milk and eat yogurt.

I know there may be many other reasons for her behavior, but the celiac disease keeps popping up in my head. The doctors only say that as long as she eats and thrives there is nothing to worry about. At what point do I start worrying? Can I request the testing done just because?

One more question – is celiac a recessive or dominant gene? I hope it’s not dominant – this way I can talk myself into thinking that she is ok since I am not a carrier.

I am being paranoid? It’s difficult to put on a piece of paper all the things that make me think she has celiac disease. Please advise.

[Carriefaith]

All 1st and 2nd degree relatives should be tested for celiac disease since it is genetic. Since your daughter is showing signs of celiac disease and is genetically susceptable, then she should definately be tested.

she is lower than the 5th percentile now!!! That scared me. Plus she poops three times a day and it is always watery – kind of like diarrhea, now the color is light green.

Low weight and diarrhea are common in people with celiac disease; however, some people have hardley any symptoms at all and still have intestinal damage.

[KaitiUSA]

She should definitely be tested. The symptoms sound like those that can come with celiac and it is genetic. However, testing in kids under 2 years can be inaccurate.

And your husband should be on the gluten free diet to...symptoms or not if he has it and does not follow the diet increases his chances 40-100 times of getting cancer,diabetes,osteoporosis, and it knocks an average of 10 years off your life.

Both parents do not have to carry the gene for her to get it. Also, you may have the gene and not know it. You just may not have had it activated. You never know.

[Guest taweavmo3]

I don't think you are paranoid at all.......please get her tested! Our ped. had one child come back positive at 18 months, and I believe there are a few other parents on this board with babies who were diagnosed well before 2 years old.

My daughter didn't get tested until she was 3 years old, and is developmentally delayed now. She is at least a year or more behind. She was the same way you described your daughter....she started off a very plump and healthy baby, but by her 2nd birthday she had actually lost weight and had not grown since her 12 month check up.

From what a doc described to me one time.....when a baby is malnourished, the first thing the body stops doing is feeding the muscle, so the weight declines. Then the bones stop getting nutrients, so they stop growing as well. Lastly, the brain will stop getting nutrients, which is why they believe my daughter is as behind as she is.

I am just kicking myself now for not being more aggressive with her former pediatrician. I KNEW something wasn't right, but since I'm very petite, they just told me she must be taking after me, and that since she ate, she was fine. All of her symptoms could be explained by something else, so it was easy to brush off my concerns. She was extrememly moody (terrible two's of course, they said), tired easily (she was mildly anemic, multivitamin should clear that right up). The huge bulky stools, sometimes runny......must be a bug she caught from her big brother who just started school. All the symptoms alone could be explained by something else.....but when you put them all together, they clearly painted the picture of celiac.

Only took the GI five minutes to figure out she had Celiac, I felt like kissing him.

Anyway, I say definately get her tested. They can always test again later if it does come back negative, right? Be aggressive if you have to, I really wish I had. Now we are probably looking at spending mega bucks on speech & other therapies, and most likely holding Em's back a year before kindergarten. It's not a huge deal, but something that could have probably been prevented. Good luck! I plan on having my 15 month old tested soon, and I believe my ped. will support me on that.

BTW.....just one parent carrying the gene is all it takes. I'm pretty sure it's on my side of the family, as I have a brother who was really sick as a child, and is still sick as an adult. I've had migraines my whole life, and I am really small (4'11"), so I may have it as well. I'm trying the gluten free diet with my daughter, and I do feel better. My husband is as healthy as can be......stinker!

Good luck with what you decide!

[Gosiasamosia708]

Thank you all for your replies. I think deep down inside I know she has celiac disease, but I am afraid to face it. It is a big responsibility and it feels a little sad to have a daughter who is not as strong and as healthy as I am. Plus my whole family (even my husband) is against it. They think “if it’s not broke – don’t fix it”. No one believes me. I feel very alone in this.

I will keep everyone posted on her progress.

I am also expecting a second child (late September) – we’ll see how this one goes.

[KaitiUSA]

They think “if it’s not broke – don’t fix it”.

The problem is with celiac something is broke...it may not be noticable by symptoms. You do not have to have symptoms but the intestines will be taking damage. To ignore it will likely cause other problems, some of which can be life threatening or disabling. If you don't fix one problem then another problem may arise.

Even if people think your nuts, your daughter will be healthier in life and your daughters health is what matters.

Maybe you should have your husband do some research on celiac as well because him being celiac and not gluten free will without a doubt effect him in the future as well.

People on here are great at supporting people and giving advice. Also, remember your definitely not alone....I think most of us have been told we were crazy and it was all in our heads at some point

[tarnalberry]

All first degree relatives should be tested, regardless of symptoms, in my opinion. There is NO reason not to test her. A blood test itself isn't going to change anything - the results might make her healthier and happier, however. Since you know it could be celiac disease, it's your responsibility as her caretaker and provider to find out. I know the change seems insurmountable, but you're already doing it with your husband for him, and you will be able to make the change - with time, patience, and practice.

[Guest Lucy]

Good luck. Just get her tested. It would never hurt. My son was diagnosed with "no" symptoms. He was 2.5 years old.

He is diabetic, and his endocronologist screens all patients for celiac. It came back positive, and I immediatly had biopsy and it was positive. He had NOOOO symptoms, (or so I thought, looking back he did, I just never would associate them with celiac).

[Merika]

it feels a little sad to have a daughter who is not as strong and as healthy as I am.  Plus my whole family (even my husband) is against it.  They think “if it’s not broke – don’t fix it”.  No one believes me. 

First, if she tests negative, no harm done. Second, if she tests postive and has celiac disease, then she WILL be as strong and healthy as you, provided you follow the gluten-free diet

As for no one believing you, well, you're preaching to the choir hear, I think, lol. When I got super sick with celiac, I was 19. Docs listened to me, ran a bunch of drug tests on me, when those came back negative, they pestered my mom to tell them about past drug use (puhleez), and finally told me to see a shrink.

12 years later, I got diagnosed with celiac at age 31. Sure woulda been nice to know earlier, when i could have prevented loads of damage and lived a much fuller life. I've been gluten-free for 18 mos, am still experiencing symptoms, and have a long way to go.

So, as for no one believing you, well, I had some of the "best" docs at a "great" medical hospital looking me over for 2 weeks, and a regular physician for another 3-6 months, and NO ONE BELIEVED ME that something was really wrong. Oh, except the cardiologist who said, yeah, somethings up but we just don't know what, and we've seen a few other girls about your age in here with the same thing and we sent them home and they seem to get better (ie., stop complaining, IMO) in about 8-12 months.

I've thought about going back to that one guy and saying "hey, CELIAC" to him.

Well, I digress, lol! Don't worry about no one believing you. It is hard being a parent, and you have to trust your gut (haha) and stick up for your children. No one else will.

Merika

[ryebaby0]

Your doctor says "as long as she eats and thrives" there's no cause for worry? Didn't she fall from the 50% to the 5%? Hello Mr. Doctor? Compare her weight now to what the 50% weight would be. That's what she's "lost".

Tell our story to your unbelieving family (NOT that mommy-radar needs outside corroboration -- your instincts sound perfect to me). My son lost so much weight that he ended up in the hospital 180 miles from home, on IV fluids, TPN and lipids, for a total stay of 44 days! He fell completely off the charts, his body burned up so much of his muscle mass he could barely walk 5 steps, his hair was falling out, his skin turned to parchment (zinc, iron, calcium, and nearly every other vitamin/mineral deficiency), etc..... My point is not to scare you, but to say that there is every possibility that if your child DOES have celiac disease, she will only get worse. Gradually, then perhaps dramatically. He probably had gone undiagnosed for years since he didn't have many unusual symptoms -- just small stature, slow growth, occasional GI problems (ohhhh, hindsight!)

It is true that blood tests at her age are often inconclusive. A false negative will make it that much harder to convince your family, so perhaps a deal is in order. If you were to go gluten-free for 8 weeks, if she is celiac disease you will likely see a change in her symptoms (which certainly present like celiac disease). Maybe that would help convince Dad?

We were all tested, too. I am negative, as is our other son, but my husband (always tall and skinny) was positive, and went gluten-free. Much to his surprise, he felt "100%" better gluten-free, never having thought of himself as ill......

[Merika]

Oh, ryebaby0, that is awful! I'm glad things are better for you now.

I guess for other parents to remember is that many of us were diagnosed as adults and didn't seem to have any problems as kids (well, some problems with hindsight, as you mention....). BUT We all would have been better off diagnosed as nearly asymptomatic and put on a gluten-free diet as children. So, not ALL celiac kids will demonstrate major distress. There is a broad spectrum. None of us want to see our kids in the ICU, and many of us never ended up there.

Does that make sense?

Merika

[ryebaby0]

Yes, makes sense to me! Certainly one of the problems with celiacs is that they all have their own set of symptoms and reactions. My point was just that it is _possible_ to have an experience like ours, not that it was _probable_, and that doctors very often dismiss failure to grow as something to wait out. And maybe not every child has that kind of time.My son is now in the 50%percentile for both height and weight ~ he doubled his pounds and grew about 4.5 inches in one year

[Merika]

ryebaby, woohoo, that is awesome!!

Merika

[lisabp]

You have!!! to get her tested. My son did the same thing and would only eat drinkable yogurts and milk with Ovaltine for days at a time.

So that you know there is hope...we were lucky to have a positive blood work result on a Thursday night, already had an appointment with the pediatric GI the next day (get on their calcellation list and you do NOT have to have your pediatrician make the referral) and had the biopsy scheduled for the next Wednesday. We then went gluten free.

One week later my son's attitude had improved immensely.

Today it is 1 month after going gluten free (he is 20 months old in 3 days) and he starting to eat us out of house and home again and the teachers at day care describe him as "the happiest boy in the world". His distended belly is going down, he is filling out, getting a better color and is getting taller(he just got tall enough to open the doors around the house this weekend).

So be pushy and get the order for the blood work tomorrow. In 1-2 months your daughter will be back probably better than you've ever seen her.