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Tatt - could you give me some more info on gluten intolerance please?

(13 Posts)
Squidmission Wed 23-Sep-09 11:15:42

You seem quite knowledgable abut it smile

I think I'm going to try and get ds2 tested for gluten intolerance. I really would find a gluten free diet difficult as he is allergic to so many other things. I'm interested in finding out more about peptizyde (you mentioned this in my other thread)

Do you have much experience of this? Are you or your dc gluten intolerant?

Any advice/info would be great smile
Thanks.

Charliemouse500 Wed 23-Sep-09 11:40:19

Hello
Obviously I'm not Tatt (this is my first post on MN in fact!), but my dad is Coeliac (gluten intolerant) - has been diagnosed for the last 22 years, so we have all grown up being very familiar with wheat free stuff and I am currently having tests as it looks like I am too. Anyway, from what I understand off t'internet Peptizyde isn't necessarily intended to replace a gluten free diet, but more to cover for an 'accidental exposure' e.g if your DS eats something he didn't realise had gluten in it might lessen the reaction. If you look on the coeliac society website (coeliac dot org dot uk) they have a section for families and generally have lots of useful info (including diet planning help).

Americans spell coeliac like it is said - celiac, but from what I can see peptizyde or something called gluten-ease are more common in the US so it might help to search some US sites for info.

Hope that's helpful

Squidmission Wed 23-Sep-09 12:17:27

Thank you Charliemouse and welcome to mn smile

Thats helpful, as I was hoping that peptizyde was something that could be used regularly to aid digestion.
Anyway, I've not had ds2 tested yet soam hoping that he's not gluten intolerant.

pagwatch Wed 23-Sep-09 12:23:01

squid

my DS2 has severe intolerances (alongside his ASD) enzymes have not really helped him.
DS1 however was also gluten intolerant and we gave him enzymes for probably about two years . He hadthem when he was out and about so he didn't have to resict his diet all thetime at school and with friends. He also had enzymes as a regular supplement to help his gut .

He can now eat anything with out ill effect.

If you go to Houstonni website they have info there. And yahoo have groups dealing with enzymes if you do a serach oftheir groups.
HTHs

Squidmission Wed 23-Sep-09 13:09:22

Pagwatch what symptons did he have?

tatt Wed 23-Sep-09 16:56:05

squidmission I have had a negative blood test for coeliac but I feel much better if I don't eat any. So I've done some looking for information, with the help of posters on mumsnet smile. If I eat gluten I fall asleep, have no energy, get depressed and gain weight because I haven't the energy to exercise. I love bread and I miss it but I make gluten free bread in a breadmaker. It's because it makes me ill that I started to read about it.

Then I tried excluding it from my diet and putting it back in again. The first time I did that it didn't seem to make much difference but I might not have managed to exclude all gluten. Or it may have taken my gut a while to recover from the damage. The second time I had got really bad (I really was sleeping a lot/ forgetting what I'd gone out of the room for) and that started to improve within a couple of weeks. It took me a lot longer to realise that my allergy problems hadn't been as bad, because I wasn't expecting that.

Peptizyde isn't recommended for coeliacs because it doesn't protect the gut against damage completely. However if you have a negative blood test but still have problems with wheat it's worth trying. It's also reassuring if you think you've been accidentally glutened because it should help digest some of the gluten. I've taken it on holiday when it was pretty difficult to be gluten free.

Really the best thing would be to see a paediatrician and talk these things through with him. But if you'd have a long wait or can't get to see one then you may want to consider other options.

Squidmission Wed 23-Sep-09 17:16:05

Thanks Tatt smile

I've done some reading up on it too since you mentioned it may be a possible cause for ds2 being small. He doesn't have many of the symptons but does have a couple (short stature, foul smelling, shiny poos (sorry if TMI smile))

Hopefully its not the case, but I'd like to be sure. I think I'll carry on giving him probiotics, see a dietician (when, I don't know. It seems to be taking forever)and cut out gluten from his diet for 6 weeks and see how I go.

bramblebooks Wed 23-Sep-09 18:29:15

Squid, you might need to know that your ds will need to have a good few weeks back on gluten in order to have a blood test done. It might, for that reason, be worth having one done now to rule it out (although there have been cases when a screening doesn't pick it up.). Make sure that they screen for more than one aspect of coeliac, I can't quite remember what my ds was screened for but it was quite a wide spectrum. My DH is coeliac and ds was having problems - which eventually presented as type one diabetes which is linked to coeliac.

tatt Wed 23-Sep-09 21:31:10

if you are going to have a test it is best to have it now. My test may have been negative because I wasn't eating enough gluten and now I can't face being ill again to have another test. It's a minimum of 6 weeks eating quite a lot of gluten before the test and some people suggest 3 months.

probiotics may be enough to help him with the poo problem though.

pagwatch Wed 23-Sep-09 21:34:39

squid

foul stools, increased excema, poor bowel control, headaches, poor concentration.
Loads of symptoms. All gone now grin and [hooray].

DS2 still has mood swings, massive gut problems and increased behavioural issues such as hyperactivity and self harm if he gets gluten.

Squidmission Wed 23-Sep-09 22:39:33

I've got a test booked in for next Thursday. Fingers crossed and thanks for all your help and advice smile

Squidmission Wed 23-Sep-09 22:40:40

Pagwatch Hooray from me too. It must be such a relief to get somewhere.

bramblebooks Thu 24-Sep-09 18:49:24

let us know how yhou get on.

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