My experience with GFCF (Gluten-free Casein-free diet)

My son has very bad eczema. It last for months. It is so bad that when we went to the playground, even the other (small) children asked about it. Some even asked if he had hand foot mouth disease. At the food court, strangers would be pointing at his legs and whispering. Even the pharmacist at Guardian told me I’d better take him to a doctor – and he had already been to three by then! The worst was when nothing worked. He had diarrhea, he was skinny, couldn’t put on weight, couldn’t sleep, every night as he scratched I could smell the blood,  We saw many doctors but it keeps coming back, and each round was worse than before. In the end, I did a GFCF (plus many other food-F) diet for him. 

I spend a lot of time reading up on allergies and on allergy forums, and there are mothers who are doing GFCF diet for their austistic/hyperactive etc children. The thing I’ve found out – cannot do half-way, you must go all the way to see results. If the child reacts to it, it’s basically a nervous system reaction, so every bit counts. (for my son it’s an immune system reaction).

My other son had also been to a psychologist for other stuff, and she mentioned that some of the parents of her autistic patients do see a difference with diet.

I made a lot of mistakes in the beginning, and I gave up many times, as well as cheated many times. It’s really SO SO hard to do the diet 100%. But his skin was really looking bad, so bad as if the wounds are rotting. I told myself I MUST give it a 110% go and set myself a 1-month target. The things I found out:

1. No gluten doesn’t just mean no bread/pasta/noodle. Gluten is also found in rye, barley, and possibly oats (due to contamination). (So cannot boil barley water to drink, no holicks, no oatmeal).

2. You MUST read all labels. When you do, you realise it also mean no SOYA SAUCE, no Oyster sauce, no Pasta sauce, no instant mashed potatos, no fried chicken with batter, even some potato crisps/sunflowers etc may have wheat flour as part of the seasoning. It’s also used in some sweets and gums.

3. …Which means no hawker food unless you are very sure they don’t use the sauces (which will usually have preservatives and colorings that can also affect the neurosystem).

4. You must check and double check. Some traditional rice-based products have wheat flour added in to improve the texture and consistency of the products. E.g. some brands of rice noodles, dumpling skins etc.

5. For casein, it’s found in a lot of products, not just milk. Again check labels, even if you don’t think it’s possible. Sweets and lollipops sometimes have milk. Cakes and breads definitely have milk. Many biscuits have milk. Western sauces as well. Ice cream definitely no-no.

6. EVERYONE in the family must cooperate!! We don’t put temptations in front of my son, I do the diet with him. My elder son knows what the food didi cannot take and will be vigilant. Even the small kid knows and will tell others that he cannot take certain food.

In my son’s case, staying off all the top allergens finally produced results within the month. It is a lot of work, but I’m just so relieved that his skin is finally healing. Whenever we eat out, I can see the consequences on his skin and sleep. Now, I cook everything and take it out for him if we have to be out of the house for a few hours, or go visiting. My elder one recently had to go for a few assessments, each lasting a few hours, I woke up early to cook, and bring all the food and snacks along for the younger one. Die die must do leh!

Now that he’s so much better, I started doing GFCF/soya/egg-free baking for him. We also give him sorbet treats. I often get people saying "poor thing, so many things cannot eat", but all I have to do is to look at the photo of his old wounds (I kept it in my hp as a stick for myself) and I definitely do NOT feel sorry for him.

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Isomil Soy formula-- is it GFCF?

Hi, I am a new member in kiasu parent.com. I saw your great article about gfcf diet and the challenges.

We are trying to stick to a GFCF diet. Do you think Isomil soya product is casein free? and may i know how do you choose your milk substitution for your child?

 

thanks a lot.

Rice cake and rice milk

Hi, may I know where to get rice cake? How does it look like.
Also anyone know here to get cheaper vanilla rice milk? My son can drink a lot and it’s real ex.
Tia

Thanks for sharing :)

Thanks for sharing 🙂

Try homeopathy medicine

Hi, u might wan to check out homeopathic medicine. Our family have benefitted from this natural based medicine. We see a homeopath at tanglin shopping centre.

I asked a physician whom we

I asked a physician whom we hv bn seeing.  He said once the immune system is taken care of, allergies prob will be resolved.

Interested in the medcine mentioned (made in HK)

Hi Mandylee,

My gal has eczema too.

Lately, when the weather is too hot, her eczema flared u, hesp her neck and arms, burning red and itchy.

Been to few docs, all prescribe the same steroid cream and lotion which i have been using them before seeing the docs. I am very interested in the medicine which u mentioned above which is made in HK. What’s is the name and where can i buy it from? (need prescription ??)

Thanks very much in advance.

Regards

Augmum

 

 

So glad that your strong

So glad that your strong determination and perserverance pay off! It’s really tough to have GFCF diet if no supports from other family members. When I discovered my son has a mild allergy to peanuts at 3yrs old plus, I was very careful to make sure his diet is nut-free. Luckily, he can take peanuts now at 5 yrs old.

LKL

Try chinese medication

My girl is born with eczema too.  I really really had a hard time in the past, seeing so many doctors, specialist, avoid so many types of food, and worst nothing seems to work at all.

Finally I decided to bring her to Chineses doctor to give it a try.  After taking the medication for about 3 weeks I can see the different in her skin. According to chineses doctor all these are due to the digestive system.   Very glad that I put her on chineses medication she has recover 90%.

On my last trip to HK , I notice there is a type of medicine which is very good for child with eczema .  And only sold in reputable phamacy and manufactured in HK .

After taking half a bottled , I noticed it not only helps in her eczema, now she even can take outside food without any worries.  Eggs, flour all no problem.

You may wish to give it a try.

 

 

 

Poor child. It must be hard

Poor child. It must be hard for you after reading your post.

Hi, FYI, there is a shop

Hi,

FYI, there is a shop selling fully GFCF product.  Thus, we don’t have to read the label when doing shopping.  It’s at Telok Blangah.  Shop name is Back to Basic.

They also sell bakery product.

Hi yorknell, it's much

Hi yorknell, it’s much harder work when you can ‘t sleep all night for over a year. A person can go mad from lack of sleep. I guess for us the first hurdle was finding a doc who believes in the food connection. The standard line is that if your child is older than two, it is not caused by food. We went to the national skin center and it was a disappointing visit. They acknowledged it looked bad and chronic, but only tested the items THEY think are possible. We followed their recommendations and no results. In the end other mums had more useful and practical suggestions. Finally the results speak fir themselves. My son is finally putting on weight and sleeping. He has rosy cheeks and a sparkle in his eyes. He’s no longer crying in pain every day. I can’t ask for more.

Desertwind, actually i was

Desertwind,
actually i was just desperate. 😉 it takes time for everyone in the household to get a hang of it. We made many mistakes in the beginning, but now that the results are clear, even the grandparents are very eager to stick with the diet outside the house. We also use cetaphil, sometimes physiogel. For moisturizing Physiogel cream is my favourite and it’s without chemical preservatives. We used to use organic pdts but since he was reacting also to natural food items, we stopped using them. Some use coconut oil or wheat gluten in the shampoo, or corn derived cleansers. Must check if sensitive.

Hi, actually my older son

Hi ImMeeMee,
actually my older son didn’t take much bread and milk before three. He was allergic to dairy and didn’t like bread then. He took eggs and rice cake most of the time. If your child can take soya, you can give tauhuay as well. My younger one, turning three, takes rice cake with flaxseed oil and honey, soup and rice/gf pasta or noodles, stews prepared the night before. Sometimes he only wants a fruit in the morning. They also like roasted potatoes and sweet potatoes and will take them for snacks. Now I’m just starting on gf baking but it’s good to rotate the food. You just have to plan ahead esp when doing groceries.

Hi hl-ng, Yes, schweppes

Hi hl-ng,
Yes, schweppes just told me about it! I’m going to check it out, tks so much. And I agree the results make it all worthwhile!

Thanks for sharing!

 Dear deminc,

Thanks for your detailed sharing!  My 3 yo son is allergic to peanuts, coconuts and MSG.  He also has dry skin and scratch all over sometimes.  Doctor said most of the time such itchiness is due to the use of soap.  She told us to stop the use of soap immediately.  I used those baby soap and kiddie hair-wash (recently).  But he started rubbing his eyes and eye-bags were swollen and red from all the rubbing.  Took the PD to ask whether we changed soap for him recently before we drew the connection.  I stopped using all soap immediately and used "Cetaphil" (non-soap) as recommended.  This is what the PD recommended to use only on those areas whereby need to clean.  Otherwise, it should be just rinsing using water.  It worked!  He stopped scratching almost immediately and now I bought a larger bottle of "Cetaphil" (available at the pharmacy).  His skin is also smoother not so dry.  When he was less than 1 yr old, the PD also recommended we use Chinese Tea to wash him instead of soap.  It also worked!  Because Chinese Tea actually made his skin very smooth instead of dry.  But of course it is hard work to boil it for bathing so we stopped after some time.  

After reading your blog, I have decided to be much stricter with his diet and will have a good talk with the maid to know exactly what she is cooking and using for the boy.  Eg. she said she cook all fresh stuff with no MSG and hardly soya sauce but uses the fish cake (full of MSG!). 

Again, a mother’s love is great – you are GREAT!

good to see that your

good to see that your perseverance has paid off. Kudos.

I am trying to restrict gluten in my girl’s diet, but the most difficult part is breakfast. she is 3yo and if I do not give milk and bread and usual biscuits I am at a loss of what to give.

any suggestions? tia.

 

 

Glad to you that you can

Glad to you that you can come up with solution for the problem.. i am very amused with your hardwork… mom is always hardworking, isn’t it? By the way, how about going to dietitian? Seems you haven’t seen any dietitian yet. I’m sure they will help you.

GFCF diet is the best!!

My son was diagnose with autism and Ihas been on GFCF diet for 2 years.  I am happy and delight that this diet is perfect for him.  Initally, i took me a hard time to start but when you see improvement in him.  You will feel that this is worthwhile.

You can try to give enzyme on top of the GFCF diet.  In case he has eaten the "offending" food from outside.

 

Kudos to you.  I tried a

Kudos to you.  I tried a similar diet (gluten/corn/salicylates/sugar free) last year for my younger boy after going for an allergy test.  I could understand how hard it is.  Keep up the good work.

 

Hi Tamarind, I'm glad your

Hi Tamarind,

I’m glad your son is so much better. I hope my kid will be like this too by the time he’s 6. I have heard of people suffering from the side-effects of long-term steriod use and that really got me worried. I heard of someone who ended up with osteoporosis in mid-life because of steriod injections for eczema and I really didn’t want to go down the path. I wonder why so many doctors believe that diet has nothing to do with skin conditions, and that there’s nothing to be done except to apply steriod creams and hope that the child will outgrow it. To me, this attitude is totally unacceptable.

Wow, thanks for all the

Wow, thanks for all the encouragement! Mum needs this when she feels like a kitchen slave!

Tree nymph, we did try tmc doctors.  With both doctors he went through a couple of days of purging (diarrhea and uncontrollable throwing up for more more than 24 hours). I freaked out, but amazingly he did improve afterwards. That was my first clue that it was due to food allergies/intolerance. The rash always come back again after the purging and will be as before after a few weeks. Back to ground zero. I decided I can’t put him through rounds of purging so we stopped and went for elimination diets instead. 

Fettucine, he’s turning three soon. It’s the scratching and not healing part that complicates everything, as you well understand. Our list is similar to yours except we are off fish/seafood, and rotate the other meats. Fortunately he doesn’t get swelling around the face, instead he will scream that his joints are hurting inside as well as it being terribly itchy. The sinseh says it’s internal swelling, hence the pain, but the western doctor just gives steriods and say nothing can be done. Thanks for the doctor recommendation. I may need it when it comes to vaccination time.

musicteacher,

actually it’s not hard once you figure out a list of things you must avoid, and a list of food that you CAN eat and cook, and a list of food you can have for breakfast and snacks (most common pitfalls).  After that it’s mainly managing expectations. Obviously convenience of buying food outside becomes a thing of the past. Certain food you just have to give up. The child may not understand and you have to find a way to get him (and the rest of the family) to cooperate.

Our list is very extensive for now, so we are more restricted. We are avoiding fish/seafood, gluten, eggs, corn, dairy, soya, nuts and seeds (except for flaxseeds). And of course no colorings/preservatives. We also keep an eye on salicylates. You may not need to be so restrictive.

I cook with salt and canola oil only, use herbs, and ywe now do marketing quite often to buy fresh ingredients. Think of it as the time when the child is in the first year except now the kid has teeth to chew. Some fast staples – fried rice (use salt/garlic),  stir-fried rice noodles (caramelise the onions first to give nice colour), roasted potatos (holland potatoes give better consistency and crisp nicely), meatballs (pre-fry garlic and use the oil to add flavour, use potato starch to bind and for better consistency),  fried chicken pieces (season with salt, herbs, flavoured oil, then coat with potato flour or rice flour), homemade chicken rice, beef stew. A pot of soup with permitted ingredients is always useful as a standby.

If you can have fish, you can also do grilled/panfried salmon or steamed fish with salt and herbs, garlic. Eggs are wonder food, so convenient and tasty. If you can have it, you can actually use it to make battered fish and chips (with potato starch or rice flour or corn starch) and meatballs. I wish we can have it more freely. Asian cusine actually have a lot of GF options, once you take out the soya sauce.

If someone can cook at home, there are a lot of possibilities. The main difficulty is going out and when the cook is tired. You need to have a list of going out food and carriers, and back-up snacks.  But if it’s just GFCF, there are actually available foodcourt options – e.g. chicken rice (skip the soya sauce and soup), grilled chicken (remove the skin, skip ketchup), nasi lemak.  

By the way I read from other boards that there are ASD kids can behave very violently after taking dairy by mistake. What some mums do is to give bentonite clay (it’s liquid clay) in diluted form as a drink. It helps to move the dairy out of the system more quickly. so that instead of reacting for three days, the child’s reaction time will be just one day.  Another one that is supposed to help is epsom bath.   

hth.

 

My son also has eczema, but

My son also has eczema, but not as bad compared to your son.

I used a body wash that is good for kids with eczema : Aveeno Baby Soothing Relief Creamy Wash, and apply California baby calendula cream daily. I think one important factor is the laundry detergent, I am using a type that is safe for baby skin. I also make sure that his clothes are rinsed many times so that it is completely free of the detergent.

Now at 6 years old, his eczema is under control. Fortunately I do not have to control his diet.

You are doing the right thing for your son. I had an 18 year old student whose condition is as bad as your son. He took steroids for a long time and it caused him to have cataract at such a young age ! I felt really sad for him. It is not true that when the condition will be better when the child is older. Something must be done when they are young.

Kudos to you!

Hi deminc,

Kudos to you for the perseverance to go on the strict diet for your son!  Its heart-warming to see that your son’s condition has improved due to this.  I hope you son will out-grow his allergies soon.  I count myself lucky that my kids don’t have serious allergic conditions (or maybe my kids are lucky because they have a lazy mum??). 

By the way, I’m not sure about this, but do you think TCM may help your son’s condition?

Keep up the good work!

I can understand what you

I can understand what you and your child is going through.  You are doing great.  I believe he will outgrow the allergies sooner or later.  My boy has multiple allergies since he was a baby.

Since young, he couldn’t eat many things except fish, vegetables and potatoes.  Not even citruses too.  No Kiwis, no orange, no strawberries. Currently, he is still allergic to MSG, fresh cream, fresh milk, yoghurt and peanuts.  Everything was trial and error.  If necessary, new foods are tested every two weeks.  In case of severe allergic reaction, I would keep meds on standby.  A severe allergic reaction can be as severe as swollen "airpipes" in throat, hence obstructing breathing.

May I know how old is your son?  The broken skin need to heal.  My boy scratched till he bled during toddler years as he could not control the itch.   He sees Dr Cheong from Specialist Skin Clinic (in case you would like to try).  As his immune system is better now, we hardly go back to see him unless of bad outbreaks and badly broken skin.

Do share with me how your kid does.  Cheerio, mummy!

Any recipes to share using Gluten free diet?

Hi,

My boy is diagnose with Asperger syndrome. Mind to share with us with the kind of food that u cook for your son?

I have tried once but failed… Maybe i would give it a go again….

I'm glad your perseverance

I’m glad your perseverance pays off. Mum’s always the greatest!

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