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Celiac In A 16 Month Old Baby
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Hi All,

I'm new here looking for some advice!! my son has just got a + result after 2 week in hospital in his blood tests for celiacs now going for a biopsy he has lost a lot of weight and refused food and fluid he deteriorated quickly and now only weighs 21lb should be 30lb if you follow his growth chart and is so lethargic and seems to have no energy at all wont even stand up or crawl about :( how long does it take before he puts weight back on and starts eating and drinking???? also any advice on meals for a baby that are gluten free would be greatfully appriciated! thanks in advance Mike

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Hi All,

I'm new here looking for some advice!! my son has just got a + result after 2 week in hospital in his blood tests for celiacs now going for a biopsy he has lost a lot of weight and refused food and fluid he deteriorated quickly and now only weighs 21lb should be 30lb if you follow his growth chart and is so lethargic and seems to have no energy at all wont even stand up or crawl about :( how long does it take before he puts weight back on and starts eating and drinking???? also any advice on meals for a baby that are gluten free would be greatfully appriciated! thanks in advance Mike

Hi Mike and Welcome!

I expect you're in the overload mode about now. But, it will be okay. You have found a great place here. Read, read and read some more.

I would seek out, through your hospital a dietitian who can help you craft your menu. If they are no help, come back here. Stick to well cooked whole foods and no processed foods. Some gluten free breads and pastas can be added.

I would switch to almond milk, as dairy can be an irritant until healing can happen.

And Dad, Mom...check yourselves, as the tendency for Celiac Disease is inherited.

I'm so glad you have an answer and hopes for a speedy recovery. I think you will find it dramatic. :)

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Hi All,

I'm new here looking for some advice!! my son has just got a + result after 2 week in hospital in his blood tests for celiacs now going for a biopsy he has lost a lot of weight and refused food and fluid he deteriorated quickly and now only weighs 21lb should be 30lb if you follow his growth chart and is so lethargic and seems to have no energy at all wont even stand up or crawl about :( how long does it take before he puts weight back on and starts eating and drinking???? also any advice on meals for a baby that are gluten free would be greatfully appriciated! thanks in advance Mike

Welcome

Good Luck and speedy recovery.

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There could be an associated pain with eating issue. There are proffessional eating coaches. Patients who have been on feeding tubes sometimes need to learn how to eat again.

My daughter was diagnosed at 16-17 months. She was later diagnosed with Eosinophilic Esophagitus when she was 6. From what I remember she was so sick (hospitalized for dehydration) she didn't want to eat anything. So we started with chicken broth and rice. Then she was just hungry and wanted to eat after she realized she wasn't go to vomit, "D", and stomach cramp and bloat.

Congratulations on diagnoses! Knowing what the problem is, makes it so much easier to fix. :) Keep a food journal. It will help find any mistakes in the gluten free diet and track down any other food sensitivities. (While my son (also put on a gluten free diet) was unable to eat carrots, but his gut healed and now he has no problem with them)

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My stomach aches and pain stopped after about a week but my symptoms presented differently than your son's did. From what I've seen in other posts, if your child will eat, they often start putting on a bit of weight within a month or two.

Good luck and best wishes. I hope your little guy feels better soon.

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Hi Mike, Sorry to hear about your little boy. My daughter was diagnosed at the same age and at the time had fallen off the growth chart (less than 1% percentile) and was not walking. We just assume she was going to be a "late walker" but in retrospect she was just in too much pain. After we got her diagnosed the vomiting and diarrhea subsided within a week and within 2 months she was back on the growth chart (20th percentile) and walking. AS for eating, I am sure once he starts feeling better his appetite an curiosity for food will return. As for foods, we did very mild foods at first: mac and cheese (rice or quinoa noodles), risotto, pancakes, scrambled eggs, homemade meatloaf or meatballs, burrito bowls, gluten-free certified oatmeal, polenta, etc. I am sure right now it seems like there is nothing to eat but really we eat the same meals as everyone else - just gluten-free versions. We also let her snack on raisins and chex mix as her iron levels were low. Feel free to reach out if you'd like. Best, Kristen

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Hi All,

I'm new here looking for some advice!! my son has just got a + result after 2 week in hospital in his blood tests for celiacs now going for a biopsy he has lost a lot of weight and refused food and fluid he deteriorated quickly and now only weighs 21lb should be 30lb if you follow his growth chart and is so lethargic and seems to have no energy at all wont even stand up or crawl about :( how long does it take before he puts weight back on and starts eating and drinking???? also any advice on meals for a baby that are gluten free would be greatfully appriciated! thanks in advance Mike

I'll keep your little one in my thoughts, is he eating gluten free in the hospital? I'd ask the hosptial chef directly if he is preparing the gluten free foods on a gluten free cutting board, clean kitchen area and oven. I hope they do know what they are doing. I do hope you can get your little one out of the hospital and home where recovery will be easier on him (home is usually a safe place).

Easy foods may be just vegetables that have been steamed in a pot on the stove top or in the oven and mushed up, also fresh fruits like pears or apple can be mushed up as well as cooked plain chicken or cod fish. The basics and soft is key for a cranky and sore digestive system. There are also childrens vitamins but make sure they are gluten free, call the company number or research them online. Usually health food stores have gluten free vitamins and should have them for kids.

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My 28mo old daughter isn't celiac, but I am, and she eats gluten free with me. She eats what I eat. So, we do stir fries and soups and grilled meat and veggies.

Tonight I pan-fried chicken tenderloin (a rarity around here) and served a green salad with that. (She's warming up to salad, but slowly. :) )

For lunch the other day we had a bean salad.

Last night we had steak and rice and fruit for dessert.'

Lentil soup is a big hit too.

Earlier this week we had chicken stir fry with carrots, broccoli, bell pepper, garlic and roasted sesame oil.

For breakfast today we had gluten-free oatmeal, but you can try other gluten-free hot cereals before that one.

The other morning she had a smoothie.

Often it's beans and eggs. (She likes eggs!)

And even more often it's muffins. (I make mine out of almond flour. It doesn't help that we also read "If You Give a Moose a Muffin" a lot. ;) )

Lunch varies, but is often leftovers from dinner.

I made a soup of rice noodles (asian style), tiny frozen shrimp and veggies, and broth which she liked.

Sometimes it's just fruit and a rice cake (or rice tortilla) with peanut butter).

Occasionally a gluten-free pizza.

Sometimes veggies and hummus.

And lots and lots of fruit for snacks. :)

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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