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mamatolilianna

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mamatolilianna Newbie
mamatolilianna
Posted

Hi everyone :) My name is Heather. My daughter Lilianna, was diagnosed this past June with celiac disease with a positive blood test. I have been postponing getting a biopsy done b/c she also has a milk protein allergy as well. We were hoping that it was just that causing her illnesses. Well, in the meantime my neice and brother in law were diagnosed received that information last night. I had done lots of research and asked them to get checked b/c they seemed symptomic unfortunately they both have it so now I'm heading to make some calls to get my Lily in to have the biopsy and need to get out of DENIAL :( A little about my Lily, she's 2 1/2 years old. She has been in and out of the hospital for blood transfusions due to IDA RBC of under 4 :( SHe's been a sick girl. We have removed all dairy from her diet and she's been maintening a low iron count but mangable. The problem we are having now is she isn't gaining weight she has held at 23lbs for over a year now. I'm devestated by her having this and as you all know it's a hard diet for a child to have to live with especially a very picky eater and with the addition of no dairy it's very challenging. Anyway I'm thankful to find this board and meet parents, share stories, and find interesting toddler friendly foods lol. Support is what we all need and I'm sure at times this is very overwhelming and it's nice to come to a place where other moms and dads face these daily challenges. Thanks for reading and I look forward to meeting all you :)

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Guest jhmom
Guest jhmom
Posted

Welcome Heather, we are glad you are here :D ! THis is a wonderful place to get advise and to vent!

My 8 year old daughter has Celiac and has had it all of her life, she has always complained of abdominal pain. We both have been gluten-free since September and at first it was very hard because she is a picky eater too and would cheat while at school. She finally realized what was causing her pain, so she doesn't fight me on the diet anymore :) thank goodness.

It may seem overwhelming now but I promise it WILL get easier and when your little one begins to feel better it will ALL be worth it! :D

seeking-wholeness Explorer
seeking-wholeness
Posted

Heather,

Welcome to the board! It's nice to have you here!

As difficult as it is right now, it sounds like you're on the right track as far as improving your daughter's health is concerned. As you may already know, milk protein sensitivity is fairly common among celiacs--although it certainly doesn't make the diet any easier! I and my two children are sensitive to both gluten and casein, so I understand the difficulties all too well! It's actually harder on us parents, though, because the kids are young enough that they won't remember what they're missing. Their food will probably be more nutritious than what we ate as children, yet equally tasty--and they can even indulge in some gluten-free/CF junk food now and then. They'll find their own comfort foods, too. The adjustment process that you're going through takes time and patience, but you will get through it--and your daughter's improved health will be the reward that makes it all worth it! Good luck to both of you!

wclemens Newbie
wclemens
Posted

Hi Heather, I'm glad you found this site. I know it seems overwhelming right now to think of how you're going to deal with this diet day in and day out, but believe me, it does become easier, and because you feel so much better eating gluten free and milk/dairy free, I really believe our brain chemistry changes for the better, allowing us to see the more positive aspects of life and of living with Celiac (or gluten sensitivity and other allergies).

I'm thinking lately that it is much harder on the adults to learn to deal with this diet, than on the kids, because we are responsible for so much of the choosing and preparing of foods, not to mention that some people have a hard time accepting that they or their child might be different from the general population.

I told my husband last week, "No one has ever accused me of being normal!" and though I was joking, it is true. Having Celiac since age 8 (that's 51 years now) has created one unique set of personality traits, and those include perseverance, stamina, determination, and individuality. Now that I have a new grandson who has been diagnosed with gluten sensitivity and allergies to milk and dairy, I can see the value of all the years of learning about Celiac. Now I can be a guide to him, and to any other family member who finds they have these sensitivites as well. Life is good and getting better!

Your child will be so much healthier for your having learned what the reasons are for her health problems. How opportune that other family members will also be on the same diet. Have you considered that you may also be gluten sensitive (Celiac is a genetic condition)? The more the merrier on this diet, I say. I want you to know that my heart goes out to you and your family as you learn more each day.

Welda

mamatolilianna Newbie
mamatolilianna
Posted
  • Author

Thank you so much everybody for such a warm welcome :) We are not gluten free as of yet. Lilianna will be getting a biospy done then we will be. I also have two other children Madelynne 4 and Camden 10. Should I get them tested as well? It's funny b/c as babies and toddlers they all had what I and doctors thought, acid reflux and now I can't help but to wonder if it wasn't that at all. Has anyone else had infancy acid reflux diagnosed and then come to find out it's been celiac all along?

Heather

seeking-wholeness Explorer
seeking-wholeness
Posted

Heather,

I believe acid reflux is associated with celiac disease. I know a one-year-old who had reflux trouble as a newborn, and now he has eczema and a distended stomach.... I have suggested celiac disease testing to his father, but I have no idea whether it will ever be done. I think it would be a very good idea to have your other children tested, since celiac disease is genetic and can be exceptionally subtle and hard to diagnose. Why wait until their intestines are damaged enough to produce "classic" symptoms? Find out now, so you can prevent future illness! Good luck to you and all of your children, especially Lilianna as she undergoes the biopsy!

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    • knitty kitty
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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