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Possibly have coeliac too help needed!

J

JANROU

Well-Known Member
Messages
190
Location
Norwich
Type of diabetes
Type 1
Treatment type
Pump
My son was diagnosed with coeliac disease back in February and as a family we were advised to have the blood test to check if we had it too. My blood test has shown a high TTG level so will now need to have an OGD to confirm. Can anyone tell me how going gluten free will affect my control?



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JANROU said:
My son was diagnosed with coeliac disease back in February and as a family we were advised to have the blood test to check if we had it too. My blood test has shown a high TTG level so will now need to have an OGD to confirm. Can anyone tell me how going gluten free will affect my control?



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Hi I've had Coeliac disease for 18 months now. It was quite daunting at first and learnt not to cook, bake gluten free recipes because they can be so high in carbs( rice, potato) only as a rare treat. Do you have symptoms at all?
Eating out can be a problem at times, but you do learn to live with it and I had a lot of support and help from the hospital team and you get lots of freebies and there is a yearly Free From show at Olympia, Good luck if you do have it.
 
No real symptoms but then again neither did my son. Have already been doing gluten free for him (he is 28 but just returned home after doing a doctorate) so have no real flour etc in house. Will wait till Friday to see what GP has to say and then contact my DN.
Hopefully as some of you have said things will be easier once I get used to it all, have a pump but blood sugars follow no pattern what so ever. Thanks for all your replies


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Robinredbreast, where do the freebies come from. Nick has had little help from either the GP or hospital clinic. Like the sound of the free from at Olympia will look it up.



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JANROU said:
My son was diagnosed with coeliac disease back in February and as a family we were advised to have the blood test to check if we had it too. My blood test has shown a high TTG level so will now need to have an OGD to confirm. Can anyone tell me how going gluten free will affect my control?



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Control will improve no end, no unexplained hypos for starters, more energy is a great bonus as well. :)
 
JANROU said:
Robinredbreast, where do the freebies come from. Nick has had little help from either the GP or hospital clinic. Like the sound of the free from at Olympia will look it up.



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Hi, freebies came from the hospital Coeliac dietician, also many leaflets from different companies to send off for freebies for the newly diagnosed..I don't know why your son didn't get much help or info? Try Juvela, Rizopia, ds gluten free, Coeliac uk, Glutafin, Livwell, Warburtons ( email address for free sample [email protected]) and many more which you could probably google. If you need any other info, just pm me it's no trouble. ps The Free From show was very interesting and was packed out and a great atmosphere:-). Take care
 
The speed at which things have progressed with Nick have been slow. He had his OGD in February, told he had coeliac and to stop gluten. His appointment to see the consultant was in April and he has an appointment to see a dietician in July. Possibly we will get more information then. He joined coeliac UK and we've been using that as our source of information.


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Hi Jan your son should also be able to have gluten free foods on prescription if he wants some.
 
JANROU said:
No real symptoms but then again neither did my son. Have already been doing gluten free for him (he is 28 but just returned home after doing a doctorate) so have no real flour etc in house. Will wait till Friday to see what GP has to say and then contact my DN.
Hopefully as some of you have said things will be easier once I get used to it all, have a pump but blood sugars follow no pattern what so ever. Thanks for all your replies


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If you go grain free it is likely your bg control will improve. Stay away from the gluten free flour and stuff, it is mostly pure carbs that will wreak havoc with you bg. I use egg yolk and cream or coconut flour for thickening for for example, not because I have coelica disease but because I want to avoid grain to control bg.
 
Totto said:
If you go grain free it is likely your bg control will improve. Stay away from the gluten free flour and stuff, it is mostly pure carbs that will wreak havoc with you bg. I use egg yolk and cream or coconut flour for thickening for for example, not because I have coelica disease but because I want to avoid grain to control bg.
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Grain free and coeliac are two different things totto. Also please be careful labling all gf flours 'pure carbs' everyone can handle different things and affect bg differently.
 
Engineer88 said:
Grain free and coeliac are two different things totto. Also please be careful labling all gf flours 'pure carbs' everyone can handle different things and affect bg differently.
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What have I done wrong now?
 
grain free is like a halfway house of coeliac, just another way of making a mockery of the gluten free diet. Its hard enough getting people to understand how important coeliac is without them being able to say 'oh yeah my mate is grain free'

sorry just pushes my buttons. (FYI i was glutened on monday)

Edit also you labled all gf flours as pure carbs then quoted coconut flour as a carb free thickener - its gluten free. as is almond flour and a number of others.
 
Sorry about your coeliac diagnosis.

I found going grain free was vital for bg control, being T2, so I wouldn't notice if I developed coeliac.

When I said gluten free flour I meant gluten free flour, not coconut flour or almond flour.

In my opinion, going grain free is a good idea regardless, particularly going wheat free and particularly if you have diabetes. It will solve any gluten problems too.

There are lots of de-glutened stuff and most of them consists of corn starch or wheat minus the gluten. Try them and see what they do to your bg. I have.
 
Engineer88 said:
grain free is like a halfway house of coeliac, just another way of making a mockery of the gluten free diet. Its hard enough getting people to understand how important coeliac is without them being able to say 'oh yeah my mate is grain free'

sorry just pushes my buttons. (FYI i was glutened on monday)

Edit also you labled all gf flours as pure carbs then quoted coconut flour as a carb free thickener - its gluten free. as is almond flour and a number of others.
Click to expand...

When I eventually found out I had Coeliac disease it came as a huge relief because I was so ill with it, never again do I want to go through that :-( . People don't realise it's an auto immune disease, not an allergy. I only bake GF recipes occasionally, as it causes havoc with my BS..
 
I too am type 1 and coeliac, found difficult at first but now used it. I agree that eating out can be a bit difficult, shops and restaurants have improved in the past 12 months. Did not notice any effect on my bg's although I do avoid the gf convenience foods as they are very sweet. The most difficult items are those which should not contain gluten, like ice cream and crisps. Coeliac uk produce a booklet which lists all the "normal" items you can buy. Ocado is also very good, just put gluten free in the search bar and it lists everything they sell that is gf, I found that very useful in the early days. I also go to the allergy fair at Olympia every year it is good to see what new products are coming on the market. Good luck
 
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