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Tuesday, April 21, 2009

Symptoms and Updates

Several people have asked if Kayla had any symptoms of Celiac Disease, or what led to her being tested for it, and also how things are going with the diet now.

So, I figured it was time for a little update.

Symptoms for CD can be mild to severe and some people with the disease don't even have symptoms, also called "silent celiac disease."

Some of the symptoms are failure to thrive, malnourishment, lack of growth of weight and sometimes height, diarrhea, constipation, vomiting, foul-smelling stools (uummm, aren't they all foul-smelling?!), instead of loose, stools may be big and bulky (sorry for TMI, but that could be one symptom Kayla had).

Kayla was never dx as "failure to thrive" or "malnourished" but she was very slow to gain weight in the early months; she used to go in for weekly, and then monthly, weight checks. The NP wasn't too concerned (even though one month she didn't gain any weight at all) because she seemed healthy and active enough. Even though she was slow to gain weight she pretty much stayed on her own growth curve.

So I don't know if those early months were indicative of CD or not; can a person even start showing symptoms that early? The only gluten she would have ingested would be whatever passed through my breast milk and I don't know enough about gluten to know if it breaks down and passes through the breast milk and would affect a baby that much or not.

Her only other potential symptom would have been possible constipation. I was never sure if she actually was constipated or not; I just know she would struggle a lot to go to the bathroom - and this was even as an infant when stools were loose. I couldn't understand why she would be so scrunched up in pain and crying out when she would go; I would be in tears watching her struggle and scream. I thought she had so much trouble because of low muscle tone.

At some point I remember reading a Down syndrome health guideline where it was suggested individuals be screened for CD as a preventative measure. According to these guidelines the screen should be done between 2-3 yrs of age; it doesn't mention having it repeated at later years, but for some reason I thought it was supposed to be done yearly.

Kayla initially had this done around 2 or 3 years and that screen was negative. (I've since been told the screening she had done was a less sensitive test and one that isn't used any more because it's not reliable.) I guess it's good thing I was under the impression this test should be done annually or else we would have continued to believe the first test results of negative for CD.

Here is an article on Down Syndrome and Celiac Disease that gives a lot of good information. CD is a genetic disease, so it's recommended first-degree relatives be tested as well - guess I'm next to be tested! Since it's genetic there still isn't a correlation to why individuals with Ds have a slightly higher rate of having CD.

So, now that she's been on this GF diet for a couple of weeks have I noticed any changes? Not really. But considering she didn't have many symptoms to begin with I guess there wouldn't be much to notice (and her stools haven't changed yet either).

How is Kayla doing with the diet? She doesn't really know/understand right now that she's even on a GF-diet. I'm sure she wonders why I tell her she can't have those Goldfish crackers anymore, when she used to eat them, but she hasn't questioned it or thrown any fits over a food she can't have. I just say something like "those are for Lucas, those are his snacks...these are Kayla's snacks" and she seems to accept that.

The biggest adjustment for me (aside from reading food labels) has been eating out (seems like just about everything on a kid's menu is breaded), and getting in the habit of carrying snacks for her - especially if we're going somewhere that snacks are going to be served.

When we went to the DS playgroup a couple weeks ago I grabbed a rice cake for her figuring the kids would have a little snack. Well the host had a whole lunch prepared; thankfully she had raisins, yogurt, fruit, and string cheese. The only thing Kayla asked for that I had to say no to was the Goldfish crackers.

Then I took her to the MOMS Club Easter Egg Hunt during spring break. Afterwards we went in for our short meeting and there were snacks for the kids; I completely forgot to bring anything for Kayla. The snack, again, was Goldfish crackers. When she asked for some I just had to say "no Kayla you can't have any of those." Thankfully the mom bringing snacks that month also brought yogurt so she could have that.

Eating out is proving to be quite the challenge, but I'm trying to figure that out too. The next HOOT-n-HOWL dinner is at a local pizza place. What would be the point of bringing Kayla to that when she can't eat the pizza? I've found that Burger King and Chick-fil-A use dedicated fryers so they are only frying fries in them and those would be safe for her. If they aren't dedicated fryers then they are also frying food like nuggets and onion rings in them; and those are breaded so the breading contaminates the oil the fries are in. All of these little things I wouldn't usually think about.

So, there is our long-winded update!

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Mom24 said...

Okay, thank you for that info. I still have a stupid question though. If she was symptom free, and I do realize that's an if, and if the diet hasn't made a discernible difference, then why follow it? Why get tested yourself if you've been fine all these years? Why does it matter? What's the consequence to ignoring it?

Just curious. Thanks.

Christina said...

I'm glad she is doing so well! I, too, was wondering why you are continuing to follow it when she doesn't have any symptoms and hasn't show any difference. I appreciate you providing all of this information!

Punkie Girl said...

Hello this is Angela. I have Williams Syndrome. I also have Celiac Disease. I was diagnosed about 2 years ago. I got really ill in March 2007 after my niece was born. Things just started getting out of control! I had a majority of the usual symptoms. I too am on a gluten free diet. In answer to one of your bloggers questions of what are the consequences of ignoring it, do not ignore the symptoms, because ignoring it could lead to other diseases associated with the disorder such as Diabetes, Cancer,and other serious GI disorders and could even lead to death if not diagnosed and treated! I would go to the celiac disease website:www.celiac.org. Also the diet may take some time to work. It may take some time for the body to heal itself even if you do have Silent Celiac Disease or are symptom free. Also to answer another question one of the bloggers had about getting tested yourself for Celiac Disease, if one person has CD another family member might have CD also even if they aren't affected by CD itself. I hope I have cleared up any confusion anyone might have about the disorder! Thank you soo much for letting me blog on your site! really appreciate the opportunity you have given me today! Sorry if it sounded like I was lecturing, I don't mean to lecture you or anyone else on your blog. Just thought I could be of some help

mommaof4wife2r said...

wow...that's all i can say! thanks for the info though. there's some concern about sofie and her tummy issues, but she's only 15 months old and we are doing meds for now. this is good info though! thanks.

chelle said...

What a huge adjustment in your world! Glad Kayla is doing well with it.

Ann said...

I also have a hard time with eating out. I heard PF changs has gluten free items. In DC there are two bakeries that do GFandCF.
Sticky fingers and Cake Love. They are both great.
Do you have a Wegman's? They have tons of GF products. they have frozen pizza crusts (Glutino) that you can use gluten free pizza sauce from Trader Joes with and then cheese of course.
other ideas:
Also Envirokids have cookies and crackers that you can order online.
And there is a brand of chicken gluten free called Bell and Evans.
You were asking about cereal also, Trader Joes has a gluten free granola and brown rice bars.
Ann R. in DC

My name is Sarah said...

This is Joyce. Very interesting info. To this day Sarah has goldfish in her lunch, so that would be hard for her to give up too. It seems like Pepperidge Farm should come up with a gluten free fish. Sounds like you are very on top of this. I can only imagine it is difficult to adjust what is in the kitchen.

Michelle said...

Do you have a Wendy's fast food restaurant? Apparently they've got a gluten-free menu, too. Good info!

Nancy M. said...

Gosh, that is a lot to think about and to remember! It seems like you're doing pretty good, though. It's great that Kayla isn't upset about not being able to have the things she's used too. She sounds like a really sweet child!

Bailey's Leaf said...

Whew! Sounds like you guys are settling in to a GF lifestyle, though!

Maureen said...

Hi Michelle, last I heard, BK actually puts a bread coating on the fries. I don't know if this was a myth or not.

ChupieandJ'smama said...

It's so hard isn't it?? I carry the worlds biggest purse because between all the snacks and J's epi pen I need the extra room. Chipotle and and Outback Steakhouse have gluten free menus as do many chain resto's. I'm not too much help there because with all of J's severe allergies it's just too scary to go out to eat so we just don't. But go on the some restaurant websites and fish around and you should be able to find them. Celiac Disease has really gotten a lot of press and restaurants have sat up and taken notice. It's surprising how many have gluten free menus now (but not many have dedicated fryers like you pointed out).

Anonymous said...

I believe most McDonalds use dedicated fryers for their Fries as well.

Beck said...

To answer Mom24s question, having celiac disease - even without symptoms - means that your body (mainly the vila in your intestines) are getting permanently damaged every time you eat. This means that over time, the person will become malnourished and eventually run the risk of serious immune system disorders, some rare cancers and death from liver diseases. If someone has celiac disease, they HAVE to follow the diet for the rest of their life.

And Michelle! I HAVE A GLUTEN FREE GOLDFISH CRACKER RECIPE!... I'll have to dig it out, but email me and I'd be perfectly happy to send it your way.

Killlashandra said...

Worrying about food is so stressful. It's weird how you don't think about it until that one dietary restriction comes up. I've gone on the say no to high fructose corn syrup kick in our house and just trying to keep up with that involves a ton of label reading.

I am glad she's doing ok with the diet so far. I have to agree that eating out would be a huge complication that's for sure. Maybe search out some vegan places to try for something different.

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Anonymous said...

I have celiac disease.Chick-fil-A rocks its GF stuff.Have you heard of glutenfreemom.com and the Living Without magezine?