Banging my head off a brick wall. - Gluten Free Guerr...

Gluten Free Guerrillas

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Banging my head off a brick wall.

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Thank you all for your comments and advice on the "do you feel ill" thread, I love this site! I didn't want to hijack Lynxcat's thread more than I already had so thought I make my own post.

Potted history; Shane is now ten, he had a negative Coeliac test at age 8 after many years of stomach pain, lack of energy, constipation, insomnia and so on but ticked so many boxes that his GP put him on a gluten free diet anyway. We saw a huge improvement initially in his energy levels, sleep pattern and general well-being but he didn't put on a single ounce of weight for a year, was monitored every 3 months by his consultant and dietician. His consultant told me that at his age this would be considered to be weight loss as he should be growing so quickly (and was putting on height) At one stage we were asked to remove all milk and soya products from his diet but this made no difference so they were re-introduced. Eventually he very slowly started to gain weight but it was always 2 steps forward and 1 step back but it was all going generally in the right direction. Since Easter, however, he has been going in the wrong direction, 1 step forwards and 2 steps back and indeed has lost about 5 pounds since then.

I happen to think that part of Shane's problem is that he is in calorie deficit. He loves sport and plays football, gaelic football, rugby and handball on a weekly basis and at a high level, being on all the school teams. This may not sound like a child who is unwell but, for example, on a Saturday after an hour of rugby the rest of the day is spent on the sofa and there are always tears at some point of exhaustion. He eats a wide range of food but only tiny amounts, enough to stop him feeling hungry but that's it so we feed him little and often. He loves pasta but for dinner might only eat about 8 or 10 small tubes or shells with sauce before deciding he's had enough or that his tummy is sore. With this in mind I had gone to the GP this week to ask for a supplement drink, as advised a while ago by his dietician but as I have said she told me to "give him more to eat" and "maybe we're making a little to much of this Mum?", told Shane to try harder and sent us on our way. That night Shane managed half a burger on its own and then ended up crying uncontrollably because he couldn't do what the doctor told him and thought he was letting everybody down. I would make more of it with the GP but he sees his consultant in mid July so I'll wait and see what she thinks. This can't be all the problem either as he still needs 2 sachets of Movicol daily for constipation.

Has anyone else experienced these issues with a child? Apart from full cream milk has anyone any suggestions for calorie dense foods? (He doesn't have a sweet tooth so needs to be savoury) Any other thoughts, those of you who haven't nodded off while reading?! Sorry for the length of this! All help/thoughts before I see his consultant appreciated.

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11 Replies
Lynxcat profile image
Lynxcat

Hello Kitty, I had a cousin who was very similar to your son. He, to my knowledge at any rate, didn't suffer with coeliac disease. He was very small for his age - there was under two years age gap between us and yet at one point there was a two foot difference in height. He was terrible with food and often would be coaxed to eating a bar of chocolate rather than his dinner by his worried mother (my auntie). He always ate more when he was with me - in fact, strangely he would eat the same quanitity of food and not complain about anything and never leave anything - but when he was back at home he would leave his dinner. He was so very thin you could see all of his bones and his mother was constantly worried. His size began to change as he reached his mid teens and by his late teens he had sudden growth spurts - by his early twenties he reached over six foot. I am telling you this to give you encouragement because he also filled out and was no longer punishingly thin. I think that he began to grow the moment that he really started to enjoy his evening dinner. If you look at this from the opposing point of view - then the following may be of assistance. From what I have read, they (the medical profession) have found that if they are to help over-weight people lose weight they have to get them to agree to never mix carbohydrates with fat. With that in mind, perhaps you could attempt to do the opposite and try and have some mixture of carbohydrate and fat with every meal, if possible. Breakfast - perhaps try his favourite cereal say puffed rice and add to this a spoon of soft cream cheese, a spoon of Greek full fat yoghurt, a splash of milk and either a spoon of honey or some jam. That way you are mixing fat and carbs. Sandwiches of perhaps butter and cheese may be with a little red currant jelly - or fresh roast chicken and use a little of the jelly that forms at the bottom of the dish with a little of the chicken skin - or beat up some red salmon with a little butter and cream cheese and spread onto buttered bread, etc I hope that this explains what I mean.

I have always found over the years that everyone I have met that hasn't ever been able to gain weight or have been thin and under weight - so far - have never really eaten cooked dinners and whenever they have changed their eating habbits and began to eat more cooked dinners they have managed to increase their weight. I do hope that this helps a little - I know that it is truly worrying and I imagine you must be at your wits end.

Good luck - I hope that your son begins to gain weight soon. x

Thank you for the reply, Lynxcat. At this stage Shane isn't exactly underweight, apparently his height is about 75th percentile and weight is about 50th but because it is going in the wrong direction I want to nip in in the bud before he does end up underweight. He doesn't eat no matter where he goes, my Mum is forever trying to think things up for him to enjoy because she thinks it is something she is doing and when he goes to friends houses or parties I am usually met with "he didn't eat anything" when actually he probably ate his usual amount.

Penel profile image
Penel

I'm really sorry to hear about Shane's problems. As a dietician has advised you to give him a supplement drink, is there a suitable one you can buy yourself? Your doctor is very unhelpful (to put it politely!)

If you are looking for calorie dense food you probably need to go for high fat food (forget about any idea that it is bad for us), it might also help with the constipation. We have gone back to cooking with lard, it's not greasy, contrary to what you think! My underweight son (grown up) finds that he needs to eat protein and fats to stop him losing weight.

I found this site on feeding underweight children healthy-cooking.info/gain.htm

Hopefully other people will have more ideas on this. Good luck KittyBling, having a poorly chid is such a worry.

Mia1057 profile image
Mia1057

I agree that high fat is probably the way to go, olive oil added to his pasta, cream cheeses, so you can really increase the calories in his 8-10 pasta tubes by adding a tablespoon of olive oil and 2 tablespoons of cheese. Make your own potato crisps in olive oil or lard as kids always love mine but they are really high in calories. Plus make sure you are buying full fat butter, yoghurt and gf ice cream. I found with my daughter that I was better to serve 2 very small courses so 8-10 pasta tubes followed by a small pudding or cheese and fruit rather than try and get her to eat a larger plate of anything. Plus nice snacks throughout the day. My daughter is now 26 and 6 feet tall.

Coeliac_Copper profile image
Coeliac_Copper

Hi Kitty, just a quick couple of suggestions; cashew nuts are pretty high in fat and calories, good to snack on and are really more-ish! Also, you could try making your own sort of shake? Maybe blend some milk, ice cream, nesquick powder, honey, chopped nuts etc etc together. I find it easier to take in a higher amount of calories when it's in liquid form like that, especially in the mornings if i can't stomach much to eat.

Best of luck to Shane!

Sappho profile image
Sappho

I couldn't agree more about the protein and fats. He is a growing boy and active so his body needs protein and fats for repair and growth. I am a celiac and also a bodybuilder and have found the ideal diet to be high in protein and fats for me , with lots of veg and fruit . I eat nuts as snacks and also take a protein shake mixed with full fat milk or coconut milk between meals to keep my weight up.

You can buy gluten free protein shake mix at most health/bodybuilding stores. You could get him so weight gainer or lean muscle mass powder which would help stabalise his weight.

Leave snacks around the house for him to pick at so that meal times are less stressful for him.He feels like he is letting everyone down by not eating more.

Encourage him to eat the protein in his meal first (a good tip for everyone who gets full too quickly). Many gluten intolerent people would benefit from eating more protein and less of the manufactured gluten free products, which are often empty calories.

Hope this helps.

Thank you all for your replies, there is a lot of information there for me to work my way through. Hopefully some of it will help. I should add that meal times have never been stressful for him as we make no fuss of what he eats or doesn't eat but he now feels under pressure because of the GP and her ridiculous comments. Very irresponsible of her. Thank you all again.

1stgls profile image
1stgls

some of the "complan" mixes are gluten free and in one "milkshake" there are about 1000 calories, so if he drinks even a bit of these during the day he will increase his calorie intake without the stress of trying to eat more----take it from me --the high calorie drinks you can get on prescription are quite sickly sweet and disgusting and I think he will not like them.

Laura78 profile image
Laura78

I would have a go at the paleo diet/the specific carbohydrate diet/GAPS diet

I do a bit of a combination just trying to find what works for me - definitely has helped with the bloating and pain. Gluten free just wasn't enough for me and i find i react to sugar and dairy.

The thing i noticed that has helped me is the gradual addition of the SCD 24 hr fermented yoghurt. Also with the Paleo diet you eat a nice amount of protein with every meal and that seems to build muscle and energy so perfect for an athletic type although you probably need to add more of the carbs ( low gI carbs).

BodyOfWisdom profile image
BodyOfWisdom

Keep in mind that not all calories are created equal. It is not so much a calorie-dense diet he requires, but a nutrient-dense diet.

I would have concerns about giving anyone, especially a child, any kind of protein drink comprising concentrations of a particular substance. It isn't how nature intended us to process them and our bodies aren't designed to. It may also stress out a child's already weakened digestive system, having to process a concentrated form of macro-nutrient like that.

It sounds more like your son needs complete foods - so that he can assimilate all the vitamins and minerals from them, not just as a vehicle to build muscle or gain weight. You need to maximise his nutrient intake and make his absorption as efficient as possible.

I would recommend excellent quality vegetables and fruits juiced into a tasty drink to get nutrients into him in a quick and easy delivery system. Most kids are happy to gulp down a glass of something that tastes good. Juices are less 'filling' than smoothies and you can pack more nutrients into a juice glass for glass. You can even do a hybrid for extra punch by blending an avocado into a fresh juice and get all those good fats in him - avocado also enhances the absorption of the vits and mins from the juice so double-whammy!

This does require the purchase of a juice extractor if you don't have one, but they are a brilliant investment for nutrient-packed 'fast food'

Example juice:

1 apple

1 slice pineapple

BIG handful spinach or kale

1 carrot

slice lemon or lime

Juice all ingredients. If you have time and a blender, blend an avocado then add juice and blend together. Call it 'jungle juice' or 'swamp juice' and get him to guzzle it.

Another tip: if your son is eating nuts as a snack, try soaking them for at least 4 hours and even overnight, rinse thoroughly and pat dry before eating. Nuts, seeds and grains have natural coatings that inhibit absorption of their nutrients when we eat them. Soaking removes this and they are much easier to digest and extract the nutrition from. The same thing goes for brown rice, quinoa and most other wholegrains - which is something that would really help with his constipation too, along with plenty of fluids.

This post got kinda long, sorry! By the way, I don't work for a juice extractor company!

autogirl profile image
autogirl

hi Kitty, well he could be hypo or hyper, the changes in energy and the fax are

if you have one autoimmune problem he may have another. the tests for the thyroid are a bit of a joke, they only pick up bad cases, so maybe do a bit of detective work your self. this is what i do. first Google autoimmune condions

and see what symptoms match up. i found out many years ago that i am hypo,

but doc says no, but had a lot of symptoms and then found out it was hashimoto`s (postpartum thyroiditis) also have RA (rhuematoid arthritis) also other allergys. and now have celiac`s. so you never no . treat my self now as dr

will not as they don`t no much about the immune system, i had no choice, treat or stay ill. also found out i may be mildly dislexic. this also is linked to autoimmune as both my son`s are autistic. what a mess.! hence the bad spelling.

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