New Here Too - Need Help

[Tim V]

Three weeks ago I had never even heard of the term celiac and now here I am posting my first message. Life can be so inexplicable......

Our 14 month old daughter started refusing foods and throwing up around two months ago, right after she turned one. She would throw up about every 5th day, right around dinner time. Very strange, but seemed fine otherwise. After a couple weeks of this we went to the doctor. She had lost almost a pound and a half. It was believed to be lactose intolerance as all of the symptoms coincided with her switch from formula to whole milk.

Two weeks of soy went by with no vomit. Then she did it two consecutive days. That's when we started noticing muscle loss and abdominal bloating. Getting worried......

A second visit prompted our pediatrician to suspect celiac (she rocks). Got a blood panel done and it came back positive. We immediately went gluten free (I know, I know, wrong) and she started getting better in just a few days. After 5 days of being on this new diet, we got an appt. with Dr. Alessio Fasano, who is the head of the Center for Celiac Research at the University of Maryland Medical Center in Baltimore. It's only 10 minutes from our house. How unbelievable is that?!

He informed us that we had to get a biopsy of our daughter and she needed to go back on gluten. Not cool. But after a lot of researching and questioning we knew it was necessary. Put her back on gluten and the symptoms all returned. I'm so tired of cleaning up vomit....

The biopsy was yesterday (election day) and she's recovered. The doctor who did the biopsy said her small intestine was a mess and would be "shocked" if it didn't come back as celiac. So for now, we're assuming celiac.

So here's my question. Thanks for your patience!

She has become a very picky eater. Obviously, while waiting for her procedure day to finally arrive we were told that other than a daily serving of gluten (poison), she was allowed to eat whatever she wanted. Meal times have become a nightmare. She will shake her head at or refuse almost everything. I'm sure it's because she is in pain. We will attempt sometimes as many as 20 foods to get her to eat. And now that we're gluten free, the choices have been reduced - though it's not as bad as I originally thought. Has anyone else experienced this?? Is this just a phase she's going through, which will hopefully subside when her body starts healing? Any time frames? I know everyone responds to celiac differently.

I can't wait to hear some responses. Even though this is my first post, I feel comforted being a part of this board. Thanks!

[gfmolly]

Tim,

It really sounds like you are doing all the right things! Great work. It is so scary to watch your child have medical troubles.

I have celiac, and I am having my 7yo son biopsied next Tues. My thoughts about your daughter are in line with what you said, it doesn't make her feel good to eat, so she's refusing. As her intestines heal, (you may want to go dairy-free for some time as well in order to facilitate healing, she will be more apt to eat a variety of foods. Right now, try to find what she likes and offer that and other things that you want her to eat at meals. Smoothies could be a great option to get something high calorie that she will eat. My youngest (non-celiac) has been a picky eater his entire life and it seems to happen in phases. There is a small possibility that this is a kid-phase that will pass as well. When my guy is in his pickiest phase, we try to sneak the calories in the stuff he likes. He likes to dip anything in ketchup, so we'd always offer that. I would puree sweet potato and it into sauces as a way to add vitamins. There is a really great book by comedian Jerry Seinfeld's wife called "Decadently Delicious" that offers these types of sneaky recipes. I found it to be a very good resource during the pickiest of times.

All of that said, when your dd starts feeling better, you may not have many issues. When you feel miserable after you eat, it makes you not want to eat!!

I'd also say that I am jealous that you have such a valuable resource in Dr. Fassano! Best wishes with everything.

Molly

[happygirl]

Tim - wow, what a ride you have had. I'm sorry your sweet daughter has had to go through this. I'm sorry you are having to deal with this, but this board is a great resource , so I'm happy you have found it!

You are in VERY good hands at the Celiac Center.

There are lots of gluten free replacements. If you could share what types of things you are looking for, we can help find you gluten free brands or substitutes. For example:

Pasta - there are great gluten free pasta. My favorite is the brand Tinkyada.

There are gluten free cereals - including gluten-free 'cheerios' and gluten-free 'rice krispies'

I believe they have a great dietitian at the Celiac Center - you may want to ask for an appointment with her.

It may be that she's picky because she's in pain. With the introduction of the gluten free diet, eating in general may become easier.

Good luck, and let us know what we can do to help.

[ShayFL]

I would nix the dairy too for now so the tips of her villi can heal fast. She will feel better sooner.

Smoothies are a great idea and if she refuses make popsickles with them. I know it is cold now and popsickles might not be a big hit. But you wont have to waste the fruits this way. You can just lightly thaw and blend in the blender again. You can get hemp milk or almond milk to make the smoothies or if she tolerates soy, that as well.

Here is a nutritious smoothie that will help her fill out again:

Open Original Shared Link

Just dont "force" her to eat. Let it be on her terms. Make the creating of the food seem fun to her so she will want to try it. Instead of just putting the smoothie in front of her face. Let her throw some of the ingredients in the blender and maybe turn it on (on low speed so it doesnt scare her). Make fun sounds while make it and such. You drink some first and smile and carry on. Then if she seems interested, let her try it.

Kids naturally put things in their mouths at that age, so maybe design some fun crafts or art with gluten-free foods so she can associate food with feeling good again. And maybe she will want to nibble on the project. You nibble first, but dont say anything. Just have fun and hopefully she will follow your lead.

[mom2twoangels]

Hi,

I am a few weeks ahead of you my dd scope was about three weeks ago. She also had muscle loss, refusal to eat and no energy I carried her everywhere. She is 2 and almost a half. She also was super picky after her problems which were simliar random throwing up, severe tummy pain. At first she would only eat a few of the safe things she used to. She has slowly started adding things into her diet even fruits and veggies that she used to love she is slowly picking back up on some of them. I definitely think it is a phase due to the pain, I just kept offering things - fun things new things when I could and she started picking back up with her eating.

I have cut down her dairy as well in hopes of helping her tummy heal quickly. She will now eat soy replacements for dairy so that has helped, soy cheese and milk. She can't have rice so corn is huge for us right now, they have corn pasta and breads. I have been baking with corn and potato starches - some things have turned out ok.

I have just trialed Quinoa as well which both kids ate - yeay. They have pasta and flours with Quinoa.

My daughter is doing so much better on "the" diet, she has gained part of her wieght back, her arms seem a little fuller and her Pot belly seems a bit smaller. I hope your kiddo will be feeling better very soon as well.

[gfpaperdoll]

I am helping a mom with an almost 2 year old. the child does the same thing, refusing foods. She is doing better but the parents have been feeding her foods that make her sick for so long that she does not trust them.

I got her a nice little Dora The Explorer insulated lunch tote & took it to her with some safe snacks. She ate those foods for days when she was sick from getting vaccinations...(another topic...)

The mom is now also gluten-free, they both have problems, that is quickly being resolved by being gluten-free.

You might want to think about telling your daughter that you are now giving her "new" foods that will not give her a tummy ache. She will understand more than you think she will. You might want to eat something & then wait a minute & say, Yes, my tummy feels good. Put smiley face stickers on her food containers. If she knows other kids that eat things that she cannot eat, point out to her that it is not a smiley face food. She will understand, kids are smart, talk to her.

[taweavmo3]

You have been given great advice. I don't have a whole lot more to add, except to tell you that there is hope her eating habits will change once she stops associating food with pain. My dd is the BEST eater out of all my kids, and I never thought that would happen.

Tonight, she was the only one who ate an entire bowl of brocolli slaw, sweet potatoes, and green beans. She will eat anything under the sun, loves to cook, and even though she's only six, she copies my recipes in her own little "cookbook" writing pad. I often wonder if in the back of her little mind, she appreciates food now more than anyone can imagine, lol.

Good luck with everything, you came to a great place. This board was an essential part of saving my sanity those first few months on the diet. Welcome!

[Marie2375]

I really don't have any advice, but I live in the Baltimore area as well (Rosedale). My husband is a patient of Dr. Fassano and one of my sons is a patient of Dr. Safta. We just joined the Baltimore Celiac Support group. In Sept, Dr. Fassano spoke at their meeting. This month, the speaker was Pam, from Dr.F's office. This group also has a group just for kids. I e-mailed them today to see if they have anything for babies. I know they do activities with the older kids.

I have been cooking gluten-free since August, so if you want to PM me, we could exchange e-mail or phone numbers. There are a number of gluten-free cookbooks in the Baltimore County library system. I don't know what is available in the city.

Here is the link for the Baltimore Celiac group. The info for the kids group is on that site.

[Marie2375]

So, HERE is the link: Open Original Shared Link

Also wanted to mention that Wegmans in Hunt Valley has an entire aisle of gluten-free products. They sell Mrs. Leepers pasta, which is the best in my opinion. Whole Foods has some things as well. There is a bakery in town, Sweet as Sin that makes gluten-free cakes and cookies. They sell them in Wegmans and a couple of other places. On their website, they state that you can buy a cake from them and have it decorated by Charm City Cakes. I would suspect that cross-contamination would be an issue, not to mention the price, but it is a nice gesture. Also, at the Don Pablo's in White Marsh, there is a manager who's mother has celiac disease. I can't remember his name, but he is usually there at night. Rain Forest Cafe in Towson is very good about checking ingredients. I'm sure it is all pre-packaged.

Sorry to all the non-Baltimoreans for the city-specific posts!

[Ryan Mahar]

Wow, Tim. I have to say when I first read your post I thought maybe I was reading my own post about my daughter! Just reviewing all of the replies has instilled some calmness to my anxieties today. This is my first day on the forum and I suspect we will have many encounters in the future. Thank goodness for the "world wide web!!!" ryan mahar

[HopeMum]

I'm new here too but also feel like I'm reading my own daughter's story. We are about 6 months ahead of you Tim. My daughter was diagnosed in May and also sees Dr Fasano (we live in Parkton MD)

All the advice received so far was great. I just wanted to add something that helps me through the ups and downs of the diet.

I have a non celiac 4 year old daughter too and she is more picky than our 2 year old celiac! My point is, besides the pain and restrictive diet, toddlers are picky and go through eating 'jags.' I try to remember this (and that I lived on melted cheese as a kid) and offer a few choices but mainly go with something I know she will eat and offer the 'new' food on the side.

My girls also love the Disney Princess gummy vitamins and they are gluten free of course so at least I know they are getting their RDA even if it's not always from fruit and veggies!

I wish you the best...

Claire