2 Year Old Who Stopped Eating All Foods

[Jules]

Hi Everyone,

I'm an occupational therapist working with a family that has a two year old daughter who had a series of chronic ear infections and was hospitalized in March/April. Upon returning home from the hospital her family was concerned as she had no appetite and was not eating. Eventually she was put on a G-tube (stomach tube) and is now fed at night via the tube to receive the proper calories to maintain her weight. She has also been diagnosed with Celiacs and her family has had her on a strict gluten free diet (what little food she does eat).

She will often chew food and spit it out and will sometimes go for days without eating at all. She plays with her food but rarely finds any pleasure with food that she tastes. She often requests a food, tries it and acts disappointed as if her taste may be altered in some way. On several occasions she will eat one or two tiny bites and then want to be excused from the table. We are also seeing some behaviors (tantrums, yelling, hitting) that seem out of character for an otherwise sweet little girl.

So here are my questions: For those of you who have had a toddler that refused to eat (or ate very little), how long did this problem last after going completely gluten free? and

Has anyone heard of a loss of taste or altered sense of taste related to Celiacs? and

Why do these kiddos chew and spit out the food?

I would appreciate any feedback. Thank you.

Jules

[Helena]

Has this child been tested for food allergies in addition to celiac? That's what I'd suggest doing. Also, are there any foods which she seems okay with or does she pretty much reject all food?

[Jules]

Has this child been tested for food allergies in addition to celiac? That's what I'd suggest doing. Also, are there any foods which she seems okay with or does she pretty much reject all food?

Yes she has been tested for the main food allergies... All were ok. She also has had an MRI for a brain tumor. She had thyroid testing done also. She was down to 19 lbs at 2 years and is up to 24 lbs but that is because she is getting 37 ounces of pediasure per day to grow. She did not test positive for Celiac in her bloodwork only in her biopcies. She does not seem to prefer any specific foods. One day she will eat chip dip and the next she will not.

[Fiddle-Faddle]

Jules, please do a search on this board for a thread called, "Megan's gagging is getting worse." The member who posted the thread is TCA, and her daughter (15 months at time of post) has celiac, and had a major gagging/swallowing issue, as well as cardiac issues. TCA has not been active for some time, but I think it might be possible to contact her through this board. I'm sure she'll have lots of helpful ideas to share, and might be able to get you in touch with whoever was working with her daughter.

How wonderful that you have gone the extra mile to research your client's condition! Wish doctors were that devoted....

[mommida]

My daughter did the chewing and then spit out food. The ped. gastro. said it was from PICA, severe anemia, caused by Celiac. Her iron levels improved slowly and she stopped doing it. (Is the child going after ice cubes to chew?)

If the child is new to a gluten free diet, that would easily explain the taste being off and the lack of appetite. Some of the things sold as gluten free food is TERRIBLE! Wheat has a very distinct taste and some research shows an opiate affect on some individuals. An individual can go through withdrawal symptoms going on a gluten free diet. (Some autistic patients bang their heads against walls during withdrawal.) I would guess that about 4 months your taste starts to adjust.

This child also needs to get over the "food equals pain" experience.

Hope our experience helps.

[April in KC]

You have some good replies. An additional possibility...

Some kids with eosinophilic disorders also do this (lose interest in food, or refuse it)...eosinophilic esophagitis (EE) and eosinophilic gastroenteritis (EGE) can co-exist with Celiac Disease (my son has both Celiac and EGE). Eosinophilic disorders are more common in kids with a history of atopic diseases like asthma, allergies, food allergy, eczema, etc. It's not unusual for a child with an eosinophilic disorder to have multiple food triggers. Some kids with EE can't tolerate any food and must be on an elemental diet fed through a G-tube.

Docs don't always check specifically for eosinophilic disorders when they're taking biopsies for Celiac. I had to ask around a bit to find a pediatric GI who was familiar with eos. disorders and could test my son. For more info, this is a really good site:

www.apfed.org

Best wishes. As a parent of a child who once refused all but 6 foods, I feel for this little girl. I don't know if my son's Celiac or his eos. disorder was more responsible for his food aversions, but he's doing better after getting both conditions identified and treated.

[bear6954]

My 2 1/2 yr old son was diagnosed with celiacs by boiposy in May. They also found out that he had eonsinophilic esphogitis - non life swelling of the throat (can only be found by endoscopy) My son would chew food and spit it out. Or he would try to swollow and it would get stuck and he would throw up. They put my on on prednisone - long term and it has helped. He still has issues swolowing dry food - meats mostly - even though the swelling is gone. I find that he drinks when he is trying to swolllow dryer food. I feed my son lots of gluten free homemade pastas. I grind ground beef in a food processor before adding it to the spag sauce. Good luck.

[RiceGuy]

A diminished sense of taste is a sign of zinc deficiency. However, it could be something else which is causing her to not want to eat. I'd have to agree that one possibility could be that she's frightened that she'll be ill from eating.

At age two, she should be talking. Does she, and can she give some insight into the matter? She should also be able to understand well enough for her parents to explain that her foods have been made safe for her. A little experimentation should help reassure her that she won't become ill from eating, though that might take some time depending on how bad she was feeling before.

I don't know what's in the stuff they feed via such a tube, but I hope it's dairy-free too. Perhaps you should check into that. I don't know if deficiencies can contribute to lack of appetite, but seems to me that hunger is a strong motivator to feed oneself.

[wsieving]

My DD is 14 months and she doesn't want to eat either. It started out being an only occasional thing, but now most every day is a struggle. She also chews and spits a LOT. I really think these kids KNOW that the food is going to make them feel *icky* and they do not want to put themselves through it.

[Jules]

thanks all for your advice. We are going to follow up with her dr about EE and EGE. She does not exhibit the normal symptons that other kids have. No diherra, no bloated stomach - she has not slept through the night since birth and some night are better than others - but in April of 08 she just stopped eating and drinking. She is still not even drinking enough during the day.

Questions - are any others on feeding tubes for celiac disease? I know other said same probelems about eating and spitting out foods but there is nothing she really will eat anymore. Not even ice cream or candy on a regular basis. She likes to suck things off of foods (eg - butter, salt, cheese).

What other things should I push the drs for?

Thanks for your help -

[April in KC]

Hi again - I'm the mom who posted about EE and EGE.

Have her vitamin levels been checked? Some vitamin deficiencies have "anorexia" as a symptom - lots of them, actually. I think if you look up vitamin deficiency symptoms for different vitamins such as B vitamins, you will find at least 5 vitamins that list anorexia as a symptom of deficiency.

Does she gain weight okay on the Ensure in her feeding tube? If not, she might have a problem with the Ensure itself, i.e. allergy to milk or soy or corn that is causing her stomach to be sore all the time. Ensure has a lot of ingredients and is sourced from a lot of different basic food proteins - including soy, corn and milk (whey) if I remember right...ingredients that are common triggers of allergy or intolerance for some people. If the little girl is allergic or intolerant to either milk, soy, or corn, it might be registering with her immune system somehow and prevent her from having interest in food. There are special formulas (Neocate is one) that can be fed through the tube that are "elemental" and do not contain whole food proteins.

When my oldest son (with EGE and Celiac) develops a new food allergy, and we don't know about it yet, it seems like he gets pickier and pickier about all food. Once we retest him and find the allergy (he's developed new allergies on the rate of about one per year), then his appetite seems to pick back up. I think this is because his GI tract gets very sore when he has eos. flaring.

You might check into "dysphagia" and consider ALL the things that cause it. That's discomfort swallowing...

When and if she does eat food at all, what does she eat? Sometimes the food a picky child eats is the very food they are allergic to...so it's something to think about. There was a time my Celiac son only wanted toast and a few other gluten containing foods (and made me make a list of foods he wouln't eat...just about everything)...just prior to his Celiac diagnosis. My other son wanted milk all the time, and we found he had developed a mild milk allergy, which he later outgrew.

[April in KC]

Jules - another thought...you might try posting your question at KFA, www.kidswithfoodallergies.org. There are so many members there whose kids are on feeding tubes for various reasons...some even have rare genetic conditions...so you might find someone who has ideas we haven't thought of yet.

It's a large but private forum...you can register as a guest for free and have access to read/search but not post. That might help you decide if it's worth the $25 or so annual fee to post.

If you visit, try to find the section of their boards dedicated to kids on G-tubes, etc.

Open Original Shared Link

Parenting of the Child on No Foods or Few Foods

Support for those raising special children whose main sustenance is elemental formula (oral or tube-fed). These children are on no-food diets, or have very few safe foods, or continue to lose foods due to conditions such as multiple food allergies, eosinophilic disorders, FPIES, Hyper IgE, or others. This is the area to discuss social issues that arise from elemental formula-only diets, no-food celebration ideas, oral stimulation techniques, and issues related to enteral tube feeding (NG, G-tubes).

[April in KC]

Another thought - if you don't want to pay to join KFA (since you won't be a longtime user), you can give me permission to reproduce your first post here over there on a forum (I'm a member). You can either reply to this thread and let me know, or PM me here.

Over there, I just read a thread where someone was talking about food refusal and saying "food refusal is a hallmark of EE." Made me think of this thread.

Good luck. It's nice of you to do some much investigation on behalf of the child & family.

April

[mftnchn]

Excellent responses here. I'll just add two ideas:

Sensory Processing Disorder can involve food issues. Its a neurological issue. Still might respond to diet in my opinion though.

Some kids that haven't responded to gluten-free have responded well to the Specific Carbohydrate Diet, which is also gluten-free. Since you are tube feeding seems it would be easy to switch over and see if it makes a difference. Check out www.pecanbread.com and read the stories, there are also links to forums.

[Jules]

April,

Thanks so much. I would appreciate if you could post my original description on the kids with allergies site that you are referencing. I omitted my post that this child has been tested for the main food allergies (although who's to say it's not some uncommon allergies that the drs. didn't bother to check on yet).

People have been sooooo helpful by responding to the posting. I did want to clarify a couple of things that I omitted in my original description. Dysphagia and EE were both ruled out by the MD's. I'm an occupational therapist so I am pretty familiar with sensory processing disorders and I am not seeing any evidence of that in this case. Hope this additional info helps. If it would be easier to register myself I can do that just let me know.

Thank you.

Jules

Another thought - if you don't want to pay to join KFA (since you won't be a longtime user), you can give me permission to reproduce your first post here over there on a forum (I'm a member). You can either reply to this thread and let me know, or PM me here.

Over there, I just read a thread where someone was talking about food refusal and saying "food refusal is a hallmark of EE." Made me think of this thread.

Good luck. It's nice of you to do some much investigation on behalf of the child & family.

April

[April in KC]

Okay, Jules...I posted it in the Main Discussion Board over at www.kidswithfoodallergies.org.

I think you should be able to read posts in that forum without signing up...so you can keep an eye on what people are saying. I don't believe you'll be able to reply, however - so let me know if you need me to add new info to the post.

[jennifer123]

Jules,

I am wondering if you ever got the answer to your question? The reason I am asking is our 2 year old was diagnosed with celiac about 3 months ago. That was after being in and out fo the hospital for 3 months and loosing so much weight that he droped to 0% in his weight and was failure to thrive. He has been on a gluten free diet for around 3 months but will only eat about 5 kinds of food and very very little amouts of it. He continues to chew his food and then spit it out and sometimes will eat an entire meal like this. There is no point of holding him off to make sure he is hungry, he will goes days without eatting. He is often cranky durning the day like he is hungry but when you offer him food he smiply says no thanks and pushes it away. We have tried to give him cake, ice cream, cookies and he still refuses it and spits it out. What 2 year old spits out cake or refuses to eat it?  He continues to not to grow and any feed back would he helpful. thanks

 

Jennifer

[kareng]

3 minutes ago, jennifer123 said:

Jules,

I am wondering if you ever got the answer to your question? The reason I am asking is our 2 year old was diagnosed with celiac about 3 months ago. That was after being in and out fo the hospital for 3 months and loosing so much weight that he droped to 0% in his weight and was failure to thrive. He has been on a gluten free diet for around 3 months but will only eat about 5 kinds of food and very very little amouts of it. He continues to chew his food and then spit it out and sometimes will eat an entire meal like this. There is no point of holding him off to make sure he is hungry, he will goes days without eatting. He is often cranky durning the day like he is hungry but when you offer him food he smiply says no thanks and pushes it away. We have tried to give him cake, ice cream, cookies and he still refuses it and spits it out. What 2 year old spits out cake or refuses to eat it?  He continues to not to grow and any feed back would he helpful. thanks

 

Jennifer

Just to let you know, this thread is from 2008.  I don't think any of  them have been active for a few years.

[anyana]

I'll be honest - I didn't read through this entire thread. But I know all about having a 'picky' eater and FTT child (super tiny - she hit 20 lbs at her 3rd birthday!). Mine eventually had to get a feeding tube for about a year and a half. Feel free to PM me if you have any questions - maybe I can impart some of my knowledge!