23 Month Old Daughter Possibly With Celiac...

[Kassidy's mom]

Hi

I'm looking for advice, tips and any overall morale boosting I can get right now.

My 23 month old daughter, Kassidy looks to have Celiac ( blood screen positive and very symptomatic)

She goes in for her biopsy first thing tomorrow morning. She is quite anemic and has been very sick for about 6 weeks.....has lost 4 pounds in the past 3 months.

Any words of wisdom? I'm feeling very frazzled right now with the thought of being a gluten free family and feeling very sad for her-wishing we had figured this out a long time ago. She has been so miserable- a very colicky baby and overall has not ever been real content or happy.

To throw a wrench in things, my almost 4 year old son has Down syndrome and the doctor said he more than likely has it too, although he is asymptomatic at this point.

Help me sort this out, please!

[Kasey'sMom]

Hi Kassidy's Mom,

Welcome to the forum!

You and your family will be in my prayers. It is so difficult to see you child suffer while waiting on a diagnosis. I remember feeling so helpless but releived when we found out what the problems were.

Just remember you will make it through this. You've been given a strong instinct that helps you decided when something is not right with your child. I still feel guilty at times that we didn't find out sooner. Who knows the tests might not have even been positive anyway. We had to be very persistant and had to continue to search for answers after seeing many doctors. I know that you too will find the answers that your family needs to be healthy.

Please let me know how things go and feel free to e-mail or PM me anytime.

Take Care

[mcsteffi]

I too have a 22 month old that has celiac. We just got the results back today that said for sure but when the dr mentioned it and I looked it up... I knew that was it. He has the biggest belly and has no energy at all. I just want him to be able to play with the other kids. He will watch them. It is so sad. I am not sure how long he has had it... probably around 12 to 15 months.... and I feel so guilty for not seeing that something was wrong. So I completely understand where you are coming from.

[lbsteenwyk]

Hi Kassidy's Mom:

It is normal to feel some grief with this diagnosis. The best advice I can give you is not to dwell on it. I always try to be thankful that my child doesn't have something worse! If you haven't yet had your older child tested, I would do so immediately, so that the resluts won't be affected by having less gluten in his diet. (It's inevitable that you'll feed him less gluten when you put your other child on the gluten-free diet.) Actually, having both your children on the diet will make your life much easier, so I think that's a positive thing.

Another positive is that most children recover very quickly once they become gluten free. You may see dramatic results within a week or two.

Even though the gluten-free diet is overwhealming at first, you will get the hang of it quickly. Read everything you can on this site; there is a ton of great information, especially in this forum. In six months you'll feel like a pro! Good luck and feel free to ask questions as they arise.

[coralex]

I too have a 22 month old that has celiac.  We just got the results back today that said for sure but when the dr mentioned it and I looked it up... I knew that was it.  He has the biggest belly and has no energy at all.  I just want him to be able to play with the other kids.  He will watch them.  It is so sad.  I am not sure how long he has had it... probably around 12 to 15 months.... and I feel so guilty for not seeing that something was wrong.  So I completely understand where you are coming from.

<{POST_SNAPBACK}>

You did the right thing though - please try not to be so hard on yourself!! The nice thing is that before too long you'll see him playing and running, and full of energy. It may take a little while, though, for him to completely rebound. It's really hard when this disease is so little known, and no one can offer you any advice or you get conflicting information. I just wanted to respond because I felt so bad for you when you said you felt guilty.

[taweavmo3]

Welcome! I have to agree with everyone else, don't be so hard on yourself. There was nothing you could have done differently, especially since most people (docs included) don't know a thing about Celiac! Your little girl is still very young, and she'll bounce back very soon and be healthier and stronger than ever. It will take time to get back to 100%, but she will get there. And as time goes on, you'll wonder what you were stressing about at all.

This diet will give your dd the chance to lead a normal life she otherwise would not have had. Give yourself time to grieve and to be sad....I think that is important too. And, expect to make mistakes in the beginning, we all do. Don't beat yourself up over them, just learn and move on. We've been gluten-free for six months, and we still have gluten accidents and make mistakes, it's gonna happen. But, you will get it...and I think you'll find the sadness fading away as you start to see the drastic improvements in your little girl. That is what has helped me the most through this.

Use this board or a support group alot in the beginning, there is almost always someone on here who can answer any question you may have. And, if no one has mentioned it yet........get a Dana Korn book, called "Raising our Celiac Kids" I believe. It's an easy but informative read, and great for family members too. Best of luck to you and your daughter.

[VydorScope]

I dunno that I can add much to what has been said... but I am a father wth a 2year old son that had the same blood/bsipoy done around the age of your child. If I can answer any speicifc questions let me know! It gets better... once you start the gluten-free diet and start seeing your child getting better and better, and growing normaly again, all the stress you feel now will seem minor compared to the joy at having an ANSWER. Theres alot of power in that feeling when you move form helpless to having an ANSWER.

[Jnkmnky]

I still feel a twinge of guilt when I look at pictures of my Celiac son sitting in front of a gigantic gluten filled birthday cake... but then I think better of it. I don't deserve that guilt. You and I and all the other parents here are doing our damned best. My son changed so much after going gluten free, so quickly-- it was like having two separate children. First I had a miserable, colicky, non-responsive, non-verbal, lethargic, pained, mess of a child-- then I had a bright, sunny, happy, pain-free, enthusiastic, healthy, creative, imaginative, bright, energetic child... all within a four day period. So, going gluten free will do miracles for a celiac. Just look forward to the transition from a sick child to a healthy one. That will give you the strenght you need to soldier through the challenging days.

[key]

We too have been blessed with two kids with health problems. My celiac son also has Neurofibromatosis1(something I had never heard of before). Anyway, it took us probably 6 months to figure out what was going on. Really from 9months to 14 months were the worst. Don't beat yourself up about it. My son had had tests and I ended up figuring it out and he too became a different child.

You will be so excited to see your baby grow and thrive. Everyday I am so thankful for him. He is wonderful, smart, happy, running everywhere, etc. Before he was cranky, slept all the time, cried all the time, didn't eat, didn't grow. It was pitiful.

You will adjust to the diet, but it is a challenge for I would say the first year especially. Trying to find the best foods that are gluten-free. Having Gluten accidents. We just don't eat out anymore at all. Plus be sure that you call about every product you are unsure of, because I have made that mistake.

It will get better and the joy of seeing your child get better is wonderful. All worth the diet most days!

Good luck,

Monica