3yr Old Showing Positive Response To Gluten Free Diet

[MomOf2PrettyGirls]

I recentley self diagnosed myself with Gluten Intolerance/Celiac(not sure which for sure) and then I started reading about children with it and a light bulb went off. My 3 year old daughter has been labeled "failure to thrive", but the pediatrician wont do anything about it. I'm been really worried about my daughter because she is so tiny. She is 3yrs old and only weighs 27lbs. She wouldn't eat anything! Seriously, I could not get the child to eat.

However, I started her on a gluten free diet and she has put on weight! Her little belly is poking out and I can no longer feel her backbone and ribcage. She is actually hungry now and asks for food!

I don't know if it was just good timing or if she really is gluten intolerant/celiac. Any opinions?

[Mtndog]

It's great that she's feeling better!!!!!!!!! I can't believe your doctor won't do anything other than label her with "failure to thrive"- that's awful. Do you have the option of looking for a new one? My sister's eldest daughter sounds similar and her doctor gives her the celiac blood panel yearly just to keep checking.

I say, if she's doing better, putting on weight and thriving then keep her gluten-free! That's great!

[MomOf2PrettyGirls]

Thanks for replying to all of my posts !!

I'm so happy she is doing better too. I am so disgusted with their pediatrician. She has constantly offended me with both of my daughters. Eveyrone has told me to change doctors and i'm looking into it right now. I've waited far to long as it is.

The hardest part is our family won't take it seriously because neither of us have been diagnosed by a doctor. They feed her whatever she asks for or whatever they have. Then when I tell them she is positively responding to this diet, they just laugh at me.

[lizajane]

The hardest part is our family won't take it seriously because neither of us have been diagnosed by a doctor. They feed her whatever she asks for or whatever they have. Then when I tell them she is positively responding to this diet, they just laugh at me.

LIE TO THEM!!! tell them you spoke to a doctor who confirmed your suspicions that she does have a serious gluten intolerance and it is imperative that you keep her off gluten 100% ALL THE TIME or she has the risk of developing serious auto-immune side effects or even lymphoma.

i tell my friends that we self-diagnosed my 4 year old, but i was diagnosed by biopsy so when i tell them that is hereditary and even my engineer husband agrees that he is a DIFFERENT CHILD off gluten, they all believe me.

but i just tell strangers, "my son and i have celiac." or "we are allergic to wheat." (people "get" allergies better than celiac.) i just say he HAS celiac. not may or could or just does better on a gluten free diet. because when he gets glutened, we hear about it for DAYS. screaming, tantrums, waking up 1-4 times per night, spaced out/not listening, ignoring us... OMG, it is horrible. off gluten, he is soooo sweet and smiley and happy and just a little love muffin. definitely worth a lie!!!

[MomOf2PrettyGirls]

lizajane: OMG! That sounds exactly like her!! She was getting to the point that I di dnot recognize her. She was throwing fits and waking up ALL night long. Since the gluten free diet though, she has been 90% better. She still has her days, but nothing like it was before. And my husband also agrees, she is a totally different child now. Thanks for the advice. I will start telling them the doctor said she has to be on it!

[The Kids Folks]

I totally agree with the others on a number of points - first look for a new doctor. We went through exactly the same thing with DS - he was failure to thrive twice!! Our peds just kept saying that the apple doesn't fall far from the tree blah blah blah, b/c I am short (only 4'11). She felt he was growing at his own rate - hhmmmmnnn. He didn't need new clothes for almost 2 years. He wore the same size in kindergarten and was wearing them again entering 2nd grade!! He was not much of an eater - preferred liquids due to the fact he was sooooo chronically constipated and highly medicated for his symptoms!! Finally I had it and we tried the diet and guess what! My DS now 8 has gone from a size 5 slim to a size 6/7 regular in less than 9 months! He has also grown in height. So by all means - go with the diet!! He is also now med free!!

As far as what to tell people - think of it this way, if someone tells you that they have a peanut allergy - do you question as to how they were diagnosed? Do you offer them a peanut to see what happens? Or tell them that "maybe" a little but won't hurt? I just say that we have a gluten intolerance due to digestive issues - that is an area that most people DO NOT wish to discuss so they just leave it at that. As far as school I was able to get a note from the peds stating that DS should not be fed gluten or wheat if possible. I will be talking to the NEW peds to get a more appropriate note to give to the teachers at school!

Our whole family is now gluten free and wouldn't have it any other way - we have a new lease on life!! Happy and healthy for all!!

Good Luck on your journey!

The Kids Folks

[CMG]

I have a similar story, too, although my daughter did have the celiac blood tests done before going gluten free. They were negative.

She had dropped from 75th percentile on the growth charts at birth to 3rd percentile at her 3rd birthday. It wasn't until she was 4 1/2 that my sister suggested the gluten free diet. She was introverted, clingy, irritable, hyperactive, constant tummy aches for over two years, plus aches and pains throughout her body all the time.

After going gluten free, every symptom disappeared. After 1 1/2 years she is back up to 10th percentile. Every time she gets glutened we go back to irritable, hyperactive and complaints for about a week. I still sometimes questioned whether this was really because of gluten. What finally convinced me is that her permanent teeth now are coming in and they appear to have enamel defects - my understanding is that is common in celiac kids. I don't question that it's gluten anymore. My mom finally believes me, also because of the teeth. We have a new pediatrician because we moved. She and my GI agree that based on growth and teeth it probably is celiac.

(Working through this for my daughter is also how I determined that I am gluten intolerant/celiac; and probably because of where I live, I have doctors who get it. My doctors are all at Stanford.)

[MomOf2PrettyGirls]

Thank yo both for your stories. It is very encouraging to read them. I truly beleive this diet is helping my daughter. She seems so different and much happier now. It breaks myheart when she cries for foods she can't have. I just encourage other snacks that I hope she will take to. Thankfully, she has always loved fruit. That helps a ton!

Thanks again.

[CMG]

I have found replacements for many of the things my daughter used to ask for. Let me know what your daughter is asking for and I'll see if I can help you out with replacements. We've been at this for almost 2 years now (my daughter is now 6) and there is no longer an issue. Even when there are birthday parties at school, she turns down whatever is being served and asks her teacher for her gluten free replacement (we keep a stash in the teachers' freezer at school). She seems to know that she feels better gluten free.

[shayesmom]

The hardest part is our family won't take it seriously because neither of us have been diagnosed by a doctor. They feed her whatever she asks for or whatever they have. Then when I tell them she is positively responding to this diet, they just laugh at me.

This is the case in my family as well. My daughter had horrific diarrhea, FTT, hyperactivity, and mood swings...all of which began to resolve within 24 hours on the diet. And yet, there are family members who saw this HUGE shift, marvelled at the change, and are now turning around and saying that she should have "outgrown" it by now and that we need to see a doctor. (Never mind that our doctor is convinced this is Celiac, writes our 504, and is of the opinion that challenging the diet would be unnecessarily torturing my kid). We had the blood panel done and it was inconclusive.

There are people out there who subscribe to the belief that the only "cures" to be found in life are in a bottle of pills. If it can't be treated with pills, then it must be "all in your head". And you can't change that mindset. All you can do is what you are doing. To keep your child healthy, you may have to step on quite a few toes in order to set boundaries that keep your child safe. Don't lose sight of the goal....your child's wellbeing. That's what is important here.

Yes, it's irritating to deal with people who smirk and comment about this being all in your head. But the upside is....at least you've got something in your head to work with. Imagine life with a deficit in that department!

Congrats on finding some answers! And keep up the good work!

[MomOf2PrettyGirls]

CMG- Thanks! I will definitely take you up on that..lol! She love powdered donuts, biscuits, pizza, ad she likes the softness of regular bread(example: wonder bread) Our Gluten free bread is kind of hard and the only way it tastes good is if I toast it..which she doen't like. IT's great to hear that the school is on board with the diet. That's a sense of relief to me. lol!

Vicky it's really sad that your own family notices the difference, but doesn't want to change huh? That's been the most aggrivating thing for me. They all notice she is doing better, but refuse to cooperate.

[CMG]

CMG- Thanks! I will definitely take you up on that..lol! She love powdered donuts, biscuits, pizza, ad she likes the softness of regular bread(example: wonder bread) Our Gluten free bread is kind of hard and the only way it tastes good is if I toast it..which she doen't like. IT's great to hear that the school is on board with the diet. That's a sense of relief to me. lol!

Vicky it's really sad that your own family notices the difference, but doesn't want to change huh? That's been the most aggrivating thing for me. They all notice she is doing better, but refuse to cooperate.

Unfortunately, I can't help much with donuts or bread. I have not tried any gluten free donuts, but I think I have read that Kinikinik makes good donuts. As for bread, I haven't found any soft/spongy gluten free breads, and I think most gluten-free breads are best toasted. I have made some nice, soft hamburger and hotdog buns, though. The recipe is from Gluten Free Baking Classics by Annalise Roberts. My daughter says the hamburger buns are just like wheat ones. I wonder if that recipe could be modified for bread? Also in Gluten Free Baking Classics, I found the best gluten-free pizza dough that I have tried. I had been trying many recipes and mixes for about a year and a half, and even my non-gluten-free Italian husband likes it! When there is any discussion of gluten-free pizza, he's always quick to promote the one that I make.

As for biscuits, I have two suggestions. If there is a whole foods near you, they have a gluten-free cream buscuit that my girls really like. Whole Foods usually has a gluten-free freezer in the bakery department. That's where you will find them. I also have tried a recipe for Baking Powder Biscuits in The Gluten Free Gourmet Bakes Bread by Bette Hagman. They are very simple to make and everyone who has tried them likes them. I have not found many recipes in this book that work for my daughter, so I don't know if that recipe makes it worth buying the whole book.

I hope these suggestions help, and I'm happy to help if you have more questions.

Catherine