Possible Celiac Disease?

[Guest taweavmo3]

Hello all....hope you don't mind a quick(okay, long) question!

I have a 2 1/2 year old daughter whom I suspect may have celiac disease. I'm having a problem getting our doctor taking her lack of growth seriously, but my inuition is definately telling me something is wrong.

The problem is that all of her symptoms can be explained by something, but collectively I think she may have a larger problem.

She hasn't gained any weight or grown more than a 1/4 inch since she was a year old. She is extremely irritable (which doc attributes to "terrible twos") and always has foul smelling gas/w occasional diarrhea. She also still seems to have her big "baby" belly, but since she hasn't grown taller, doc says it's okay. Her speech is delayed in my opinion, but doc says she's a second child and second or more children always speak later. She will be three in March and even I can't really understand most of what she says. Socially she is pretty withdrawn, doesn't really liek to play much, and fatigues easily.

At last doctor appt., I brought all this to her attention. We usually see a nurse practioner whom I adore, and she brought in the head ped. to check out Emmie. He took one look at her for about a minute, looked at me (I'm short) and said "oh, she's just small like mom". UGH! They seemed to brush off my mention of her irritability and extreme tantrums.

Anyway, sorry this is getting so long! The NP did do a blood draw, and her Hgb was 10, so the low side or norm, but still normal. So, she wasn't anemic.

She absolutely loves plain white rice. Is this gluten free? I was just wondering b/c I've been letting her eat as much rice as she wants, and sticking to very basic food items. If my eyes aren't playing tricks on me, she's plumping up and for the first time in ages, she actually entertained herself for an hour with her toys instead of clinging to me all day.

Any thoughts or advice? The NP suggested hormone tests if she hasn't grown by her 3rd birthday, but with the irritability and occasional diarrhea, I am thinking something along the lines of her diet is the culprit. Thanks!

[tarnalberry]

well, she needs to be eating gluten for tests to find gluten intolerance. so, if you want to test her, she needs to be eating plenty of it. then, really, since your doctor is providing you with a service, you can go in there and demand the blood tests. you have hired him - while in his office, he works for you, you are paying him. if you really don't want to do that, you can try the diet, and then do a challenge of wheat and see how she responds, but your doctor isn't likely to accept that as an answer, I'd think, based on what you said.

[celiac3270]

It sounds very likely that she has celiac. The fact that you're limiting her diet to basic foods might mean that you're cutting out much of the gluten, which is helping her. Plain white rice is gluten-free, provided that you make it with water and not chicken broth (some broths contain gluten). Regardless of whether the doctor accepts your idea of it being celiac, you should try the diet; if it solves all the problems (irritability, gas, growth, etc.), then you don't even need a doctor to tell you that it's celiac.

[Boojca]

My son was 2 1/2 when diagnosed...and his ONLY symptom was severe weight loss and "failure to thrive"....he had NO GI symptoms at all. None. You need to go and raise a big old stink in the waiting room of your doctors office until they take you seriously. Or, and this is my better advice, bypass your doc altogether and find yourself a Gastroenterologist (a regular one or a pediatric one) and make yourself an appointment with him/her immediately. Start crying on the phone if you have to in order to get a rush appointment. And when you get your results, go in to your doctors office and let them know that if they EVER dismiss another patient the way they dismissed you they could have a giant lawsuit on their hands for malpractice.

You are absolutely correct in thinking your daughter has Celiac. If she doesn't have it, I will be floored. The way you describe her is EXACTLY how my son Brennan was just before his diagnosis. Big, bloated belly, skinny little arms and legs...he looked like an Ethiopian. Toward the end he had no appetite and was sooo tired and crabby.

This may sound really harsh, but I am soooo tired of hearing doctors dismiss "over protective mothers". It's called mother's intuition for a reason!!!

Bridget

[ashlee's mom]

If there is one thing I have learned through my daughter's diagnosis, it is that doctors don't know everything! No matter how much I like one, if my mother's instinct is telling me something different, I will never again quiet myself! My daughter's first signs were slow growth. She was dropping down on the charts and all I got was that since she could climb stairs and color (at 3) she was fine! I pursued it more and got her in to see an endocrinologist, thinking it was growth hormone (since everyone assured me it couldn't be celiac's with no abdominal issues). Of course all they tested for came back negative and so then I thought the Dr had been right all along! Then by the time she was 4-1/2 she started having diarrhea each day. She started getting lethargic and was losing weight. Since she was so skinny to begin with, it was only a couple pounds, but on her, it was scary! Finally after a month of that we were finally able to see a Ped GI specialist and get her diagnosed. I understand Drs are not educated about Celiacs, (ours now is!) but what really gets me the most is the fact that they weigh and measure our kids all the time. They plot their growth on these charts that obviously have had a lot of planning in them. Then, when the kids drop off of their normal curve, no one does anything! If you are short, then yes, your daughter has genes that may result in her being a short person. But, she would still be growing at a normal rate, her normal rate! The weight gain you mention does not seem normal! Sorry for the long post, but it just really makes me irate to see children suffering (not to mention us poor moms losing our minds!) for no reason! I would print up the classic signs of celiac and take them in to your doctor. I would demand to have her tested. You might also want to try just skipping that whole step and going strait to the GI specialist, depending on your insurance and whether or not you need a referall! Good luck, and let us know what you find out!

Michelle

[Guest taweavmo3]

Thank you all for your responses!

We are going back to the ped in December, when my youngest son has his check up. I will be armed with info this time, and I am starting a food diary so the doc can see some tangible evidence. I'm in the healthcare field myself, but all common sense eludes me when it's my own children sometimes! I know doctors like to have something concrete to go on, rather than my usual mommy ramblings. Let's hope this gets the ball rolling.

After talking to my mom, I think my brother may have Celiac as well. He had a very sickly childhood, and is now 25 years old with terrible stomach problems. He has constant diarrhea and looks stick thin. He says he's okay, but I think he's just been feeling like this for so long, it's the norm for him. He had all kinds of diagnosis growing up, but I'm guessing he was not tested for Celiac 20 years ago.

Anyway, that's our update. I'll post more when I know something! If this is it....it seems incredibly expensive to go totally gluten free. I am pretty much a SAHM, and we are on a tight budget. I don't know how we'll manage the extra cost! I know it will be totally worth it, but yikes! How do you do it? Does the whole family go gluten free? I have three children, it seems like it would be hard to have a special diet just for Emmie, but maybe I'm wrong. What do you all do???? My kids are 5, 2, and 6 months old.

Thanks again, this site is great for info!

[Ruth]

Can you ask/convince your brother to get tested for celiac before your daughter's appointment in December? His diagnosis will be the concrete evidence your ped. is "looking for" and it will help your brother too! While your at it...if he does have it, have your other children (at least the 5yo) tested too.

There is a great thread about the pros and cons of the whole family eating gluten-free ... or not. It was just a month or two ago (I think in this parents of kids section... not sure) Basically, I think the general feeling is there is no right or wrong answer... just what works for your family! I make meals gluten-free (no more expensive, really!) and have both mostly gluten-free snacks. We do have a shelf of regular bread, etc. But in our house, nongf is the minority.

All the best,

Ruth

[tarnalberry]

Yeah, if you could get your brother to get tested, and if he were to turn up positive, it would significantly help your daughter's case.

[llj012564]

I have found the gluten-free diet to be less expensive in the long run only because I eat only fresh foods nothing processed . Its more time in preperation and usually I spend a full day once a month cooking then freezing stuff for later but it is worth it for me . I dont always suject my whole family to the diet but they eat much better now than b4

[ashlee's mom]

While you are preparing information, I know there are sites that give the norm of what a child should grow each year. Since lack of growth was my daughter's first symptom, I learned a lot about it! I think it was a growth hormone deficiency site that I contacted that really had a lot of information about that. It might help prove that just because you are short does not mean your daughter should stop growing altogether! Basically, after what I found out there, I learned that there is no way the doctor should be discounting a child who stops growing or falls of his/her individual growth curve. If you want more info, feel free to PM me!

About the cost of going gluten-free, we are also on a very tight budget! Most of our meals are mainly gluten-free, and then I just adust things for our daughter. She is a bit older, but even at almost 3 it would probably work for you. I make all of her bread, crackers, pancakes etc from scratch. I mainly use the incredible edible gluten free cookbook for kids. I have started buying ingrediants in bulk when I can so we can save some more money there. We did have to buy a Kitchen Aid mixer, it works much better! Really, once you get used to it, it doesn't take much more time. We save money by only going gluten-free where needed. For instance, Ashlee likes Bob's Red Mill gluten-free hot cereal. Unfortunately, we can't afford for all of us to eat it, so the rest of us will eat generic oatmeal! It means we have to be more careful about cross contamination, but it works for us.

Just another note. I would research your area for a GOOD ped GI so you have someone you want your ped to refer your dd to. I have heard about ped GI's who still don't catch celiac disease when it is staring them in the face, so you don't want to have to deal with that on top of everything else!

Good luck!

[kentsmom]

Your daughter has the same symptoms my son did. When I asked his ped. to test for celiac, he blew me off, and said he was certain Kent did not have it. At the time of the appt, my son had grown 1/2 inch IN A YEAR. I ignored the doctor, figured a change in diet couldn't hurt, and took Kent off of gluten.

He grew three inches in three months, no longer wakes up screaming from gas pain, and his speech continues to improve. I just need to find a new pediatrician before his yearly check up!

Good luck!

[kentsmom]

My husband and I went gluten-free after my son did- it seemed cruel to have things in the house he wasn't allowed to eat. (I really miss Krispy Kreme donuts!)

The only thing that seems expensive to me is Gluten-Free Pantry mixes- but I buy them anyway. My attempts at scratch baking were not terribly successful.