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Possible coeliac

Helsharrison

Member
Messages
7
Hi, I’m new to this group. Been type 1 for 35 years and recently been tested for Coeliacs due to a number of associated health problems. Today at my diabetes apt I was told that my blood results for this were raised (should be under 10 but were 16)
I’m going to have a biopsy to ascertain if I do have Coeliacs but I was just wondering how people have managed with this condition? Did it really affect your diabetes management when you were diagnosed?
I’m quite a strong person but the thought of having this terrifies me.
Any advice would be welcomed.
Thanks x
 
Hi
Welcome to the forum.....
44 years a type 1 here who has had coeliacs for about 10 years.
Following a gluten free diet was a right royal pain in the **** (am I allowed to say ****?) to begin with.
Checking packets in the supermarkets for gluten, wheat, and barley etc seemed unfair to someone with type 1.
I stopped eating out and was generally quite bitter for a time.
Life and wife gave me a kick and I relaxed my attitude a bit and as time went on it became natural and of course GF foodstuffs are more readily available now.
It doesn't affect your diabetes in the sense carbs for insulin but what you will find is GF stuff is more carb heavy so you have to adjust accordingly.
I could go on but don't want to bore you so perhaps if you need any more information please just ask.

Good luck

Tony
 
I'm gluten intolerant rather than coeliac, but I have to say that going strictly GF has done wonders for me - skin, joint/muscle aches and pains, gut health... it is a long list, and covers things that I would never have dreamt were being caused by gluten.

Definitely a positive move, overall.
Wish I had discovered this years ago.

I agree with @Tony337 that is was a major hassle to start with, but it became second nature very quickly. I had a few sulks about not being able to eat some stuff, but soon came back into the fold when gluten set off an unpleasant reaction that lasted for weeks.

Regards GF foods - they are expensive, highly processed, never quite as nice as the G original, and I lost interest in them very quickly. Most unprocessed foods are naturally GF, and I stick to those nowadays - which has offered additional health benefits too.
 
I'm T1 and coeliac, t1 27 years coeliac for 15.

Coeliac massively affects my BG control because if I'm glutened I get almost an allergic reaction these days.

when first diagnosed I had malnutrition as I wasn't able to absorb nutrients through my gut including sporadic carb absorption.

Its not as bad as it looks and is a million times better than it was!
 
Engineer88 said:
if I'm glutened I get almost an allergic reaction these days.
Click to expand...
That is interesting! I experience kind of the same. It seems to me, that the reactions get heavier the more I manage to completely avoid all gluten and all grains. Did you ever think about cross-reactions?
 
Lar oli mu said:
That is interesting! I experience kind of the same. It seems to me, that the reactions get heavier the more I manage to completely avoid all gluten and all grains. Did you ever think about cross-reactions?
Click to expand...

I'm not Coeliac - all my tests were inconclusive, so told to go GF anyway. The Endo I was seeing reckons loads of people with AI conditions do very well. A year into GF living, if I mistakenly gluten myself, I feel like I've been hit by a truck, and not back to my old self for almost 3 weeks. It's quite an incentive not to dabble with "just a little bit".
 
Hi I am Coeliac too, 6 years now and type 1 for 29 years, I was quite ill before being diagnosed , but felt so much better afterwards, it did take getting used to at first, but it's a way of life and no trouble really.
 

If you are having an endoscopy, be sedated first, then they wake you, they give you a cup of tea you are ready to go. Good luck and take care.
 
 
Thankyou for responding to my question. My GP isn’t sure I will need an endoscopy now as she says the blood result is a given diagnosis but my diabetes consultant has referred me anyway so guess I will wait and see. I’m told to carry on eating gluten until I hear otherwise and have started just checking out GF stuff in the shops. I am away in October for my daughters hen weekend and had to inform the hotel of a menu change as I would be GF then and my choices for starter are dough balls or garlic bread.. main is Spag Bol or pizza and pudding is choc muffin. I wouldn’t ordinarily eat as many carbs as this and would usually have a salad or similar and I’m already stressing about how much insulin I’m going to need to give myself and how on earth am I going to work it all out? Hopefully by then I may feel more confident but that in itself seems like a huge carb overload!
 

Gosh - There are a fair few carbs in there, but would the fact you are likely to be going out and maybe even imbibing in the odd, small tincture influence what you would eat anyway?

If I'm going to that sort of thing, where I'm not in total control of my eating, I always make sure I have taken a Red Cross Parcel (Emergency Rations) with me, just in case there's nothing suitable or that I fancy. There's usually plenty to eat, if not the perfect combinations of foods.

I was low carbing for nearly 3 years before I went GF, so I had already given up bread, pasta and pizza. I don't tend to buy packaged GF foodstuffs, although I have bought GF Worcestershire sauce and Soy Sauce for the odd stir fry.

Good luck with it all and I hope you all have a great hen weekend.
 
DCUKMod said:
Which bit would the immune system be forgetting?
Click to expand...
Forget is the wrong word. But the cells within the immune system that save anti-body information die after around four years. So if there are no stimuli within these four years, the cells die and the anti-body information dies with them. ‘Information dies’ could be called ‘Forgetting’, wouldn’t you say so? That’s at least how I understand the Harvard autoimmune specialists’ view of ‘forgetting’.
 
Helsharrison, I've been T1D for forty years, these past few years, I was constantly vommiting, nauseas all the time, like having the noro virus three times a week for 6 years, after my Fifth hospital stay I was diagnosed with autonomic dysfunction of the nervous system, since then my glueton free lactose free decafe diet has changed my life, have not been sick once since i started, I feel absolutely fantastic now, it's new to me so I'm having little difficulty adjusting insulin and carb counting, this new fodmap diet very low on carbs, but due to help from this forum, which I'm so thankful for, I'm getting there, hope this helps.
 
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