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  1. #11
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    lambjam is offline Nitwit! Blubber! Oddment! Tweak!
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    Quote Originally Posted by OurLittleBlessing View Post
    All that said, in some ways a diagnosis isn't important anyway. If he is better off gluten, then he is better off gluten.
    This is why we haven't tested yet. The benefits of removing gluten from DS3's diet were clear and obvious within a very short time. Even if he tested negative we'd be silly to go back! We'll look for proper answers down the track.
    Last edited by lambjam; 04-04-2013 at 13:18.

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    Thank you all so much for your replies it has been a long hard road made especially hard by incorrect diagnosis and being told "he will outgrow it" so far today we have had no gluten and he has not complained of a "tummy hurt" yet although way to early to say if that's the cause at least he is having a better day and seems to quite enjoy the cereal and rice cakes he's had so far

    DF and I will be getting tested once we have the results for DS I have always had random tummy and bowel upset and after speaking to my mum this morning she said as a child I would complain that sandwiches and pasta dishes would upset my stomach so possibly a link there.

    I have found on the Coles website a whole list of gluten free recipes but as a previous poster said it is really just basic food which we eat a lot of and I will replace our pasta with the GF kind and rice.

    DS seems fine with all dairy now except cows milk which causes him to break out in a rash and have explosive diarrhea but now I'm unsure if it was the milk of the other foods he was eating. Yoghurt, cheeses and creams he seems to be fine with.

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    Quote Originally Posted by lambjam View Post
    This is why we haven't tested yet. The benefits of removing gluten from DS2's diet were clear and obvious within a very short time. Even if he tested negative we'd be silly to go back! We'll look for proper answers down the track.
    I do agree, and we are in the same boat with DD2 who has doesn't eat gluten, but has never had any testing. With her I only realised she was intolerant to it, when we took it out of the house (DD1 is very sensitive to cross contamination) and DD2's health improved a lot. I hope you folllow what I mean lol.

    The only downsides of not having an offical diagnosis that I can see are:

    1. Gluten free diets seem to have a perceived fad element to them, and it is common for people not to take it seriously, and think 'a little bit won't hurt them'. Which may be true for some, but for someone with coeliac disease even a little bit does hurt because it triggers an autoimmune response and all that follows on from that can be very unpleasant.

    2. If it is 'only' gluten intolerance then it is possible to heal and be able to resume eating gluten, whereas someone with coeliac disease will need to abstain for the rest of their life.

  4. The Following User Says Thank You to OurLittleBlessing For This Useful Post:

    lambjam  (04-04-2013)

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    Quote Originally Posted by Ashley595 View Post
    Thank you all so much for your replies it has been a long hard road made especially hard by incorrect diagnosis and being told "he will outgrow it" so far today we have had no gluten and he has not complained of a "tummy hurt" yet although way to early to say if that's the cause at least he is having a better day and seems to quite enjoy the cereal and rice cakes he's had so far

    DF and I will be getting tested once we have the results for DS I have always had random tummy and bowel upset and after speaking to my mum this morning she said as a child I would complain that sandwiches and pasta dishes would upset my stomach so possibly a link there.

    I have found on the Coles website a whole list of gluten free recipes but as a previous poster said it is really just basic food which we eat a lot of and I will replace our pasta with the GF kind and rice.

    DS seems fine with all dairy now except cows milk which causes him to break out in a rash and have explosive diarrhea but now I'm unsure if it was the milk of the other foods he was eating. Yoghurt, cheeses and creams he seems to be fine with.
    It is very common to be lactose intolerant at first, because the villi that line the intestines (which are damaged in coeliac disease) produce lactase, the enzyme that digests lactose. As he heals it is highly likely he will be fine with milk again. This would also explain why yoghurt and cheese aren't so bad, because they are fermented and contain less lactose (lactose gets used up during fermentation)

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    Subbing to come back later. My 2 year old has coeliac disease and we eat gluten free in our household.

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    Quote Originally Posted by CookingMonster View Post
    Subbing to come back later. My 2 year old has coeliac disease and we eat gluten free in our household.
    How is your DD going? I remember when she was diagnosed. I hope she is feeling a lot better now.

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    Hi Ashley, Bowel intussusception can be a symptom of coeliac, I had it 4 times within an 18 month period. It was connected with undiagnosed coeliac, and since going gluten free over two years ago I haven't had it since.

    Re gluten free, rice is your friend, also corn. You can get a lovely corn couscous from freedom foods that doesn't break the bank and it tastes like corn chips, so my kids love it.

    And polenta is good too - and cheap. It is more expensive, but there are ways around it, like making almond meal and polenta cakes. I often make up batches of mini fritattas and freeze them and also GF savoury and sweet pikelets and freeze them too.

    My kids love corn thins that you can buy as well.

    Good luck with the testing, sounds very much like coeliac, I used to get mouth and nose ulcers all the time too.


    Quote Originally Posted by Ashley595 View Post
    He has a bowel intersusception in the middle of last year which seems to have triggered this but after seeing numerous specialist we keep being told its reflux (he had it as a baby but outgrew around 6 months old) finally it seems we are on the right path to a diagnosis after a year of him vomiting almost daily suffering with bouts of diarrhea, then extreme constipation stomach cramps and bloating, unexplained rashes, mouth ulcers and more recently he has started to not put on any weight and is always exhausted sleeping up to 18 hrs a day and falling asleep anywhere he can I'm really hoping this is the answer if its not I really don't know what to do!

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    Thank you Beebs, we have just been told today that the intersusception could have been caused by coeliac would have been nice to know that when it happened we have been very lucky in that it has not happened again, they originally thought it was caused by a gastro bug he had had and the ultrasound after it was fixed showed lots of very swollen lymph nodes in his bowel but nothing more has been said about it except that they thought it had triggered his reflux and that's why he was constantly vomiting

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    Quote Originally Posted by OurLittleBlessing View Post
    How is your DD going? I remember when she was diagnosed. I hope she is feeling a lot better now.
    Thank you for remembering. She is getting much better lately. It has taken a good 8 months though to see some improvement though. So grateful that the time has passed now and we can see the change. She is sleeping much better and eating well. Tummy not so bloated now - still not flat but much better. Not getting sick all the time which is the best thing!
    Op - there is hope that things will get better but you really need to be patient as it is a slow process.

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    Quote Originally Posted by Ashley595 View Post
    Well we are in the process of getting a gluten intolerance possible coeliac disease diagnosis for my just turned 2 year old. We have been instructed to start a GF diet immediately so I was wondering how do you cope with a GF diet what things do you substitute bread, pasta and biscuits with? What kind of meals do you offer for dinner and are there any good websites for recipes and support groups?
    As far as food goes, I have found it best to mostly cook naturally gluten free food rather than look for a lot of substitutes. We have basically given up bread in our house as I have found the gluten free bread generally very heavy and difficult for dd to eat. She is also not used to eating it so we just haven't really introduced it to her.
    We eat a lot of corn thins, rice crackers and dd has gluten free sweet biscuits (?sp organ brand). San remo gluten free pasta I have found to be the nicest and we all eat it.
    We have basically gone completely gluten free as a household. I found it too difficult trying to separate foods and trying to keep dd away from food. We have the occasional gluten containing food but keep it well away from her - like breakfast cereal. One thing that is really important is to have separate spreads such as margarine and peanut butter as even crumbs in these things can be detrimental.
    I would suggest you see a dietician - you can get subsidised visits if you see your GP and request a chronic disease management plan and Extended Primary Care visits to allied health. You get up to 5 visits to any allied health and it includes dietetics.

    Hope this helps. Please let me know if you want any more information of just want to vent - it can be very time consuming and frustrating at times.


 

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