Type 1 Personal symptoms of gluten intolerance/tips for suffering with them?

[prickles1998]

Hi all,
I believe I am gluten intolerant but I am awaiting a test for it. Has anyone got personal stories/experiences with being gluten intolerant and being diagnosed with it? Im type 1 and after eating i am experiencing severe cramps, sickness and headaches. Any help so appreciated!

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[noblehead]

Sorry to hear that @prickles1998

I'm sure the member @Robinredbreast (who is also a type 1 ) can offer you some advice here, hopefully by tagging her she'll see your thread and reply. Best wishes.

 

[prickles1998]

Fingers crossed, thank you

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[Brunneria]

I will tag in @DCUKMod because I know she is gluten intolerant too.

My own symptoms are not to do with the digestive tract at all. Mine are skin (psoriasis) and joint pain. Consequently, I am pretty certain that I wouldn't ever be diagnosed using the test for Coeliac which looks for lesions in the intestine. So I will happily consider mine to be non-coeliac gluten intolerance. There is some debate and variation whether non-coeliac gluten intolerance is an autoimmune condition or not. I think it may well vary from person to person.

When I gave up gluten it took 2-3 months to experience the full benefits (good job I stuck with it, because a short exclusion period would not have seen me symptom free in that time), although most symptoms eased in less than a month. It was the first time I had been psoriasis free in over 30 years, which was wonderful. If I have gluten now, I feel pretty grotty, with both the psoriasis and the joint pain back within a couple of days and hanging around for a good 2-3 weeks, so I try very hard to avoid gluten in any form.

I'm not Type 1, but I now there is a higher percentage of Type 1s with Coeliac than in the rest of population.

 

[Chook]

I will tag in @DCUKMod because I know she is gluten intolerant too.

My own symptoms are not to do with the digestive tract at all. Mine are skin (psoriasis) and joint pain. Consequently, I am pretty certain that I wouldn't ever be diagnosed using the test for Coeliac which looks for lesions in the intestine. So I will happily consider mine to be non-coeliac gluten intolerance. There is some debate and variation whether non-coeliac gluten intolerance is an autoimmune condition or not. I think it may well vary from person to person.

When I gave up gluten it took 2-3 months to experience the full benefits (good job I stuck with it, because a short exclusion period would not have seen me symptom free in that time), although most symptoms eased in less than a month. It was the first time I had been psoriasis free in over 30 years, which was wonderful. If I have gluten now, I feel pretty grotty, with both the psoriasis and the joint pain back within a couple of days and hanging around for a good 2-3 weeks, so I try very hard to avoid gluten in any form.

I'm not Type 1, but I now there is a higher percentage of Type 1s with Coeliac than in the rest of population.

How interesting - I have both joint pains AND psoriasis - it never occurred to me that it might be related to diet!

 

[prickles1998]

@Brunneria thank you. Did you miss the gluten from your diet? And did you replace it with anything else or find any good substitutes?

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[Tony337]

I am type 1 and coeliac.
I had a camera down my throat to diagnose coeliacs.
My symptoms were mainly diarrhea related and not what you are experiencing but it can manifest itself in different ways.
Type 1 of 43 years now aged 49 and diagnosed with coeliacs approximately 10 years ago and have followed a gluten free diet ever since.

I hope this helps and just ask if you would like any further information.

Tony

 

[prickles1998]

Hi Tony, yes diarrhoea is a symptom for me too. I'm diagnosed around five and a half years now and they have suspected it was twice but the first time there was no test done and the second test was inconclusive, hoping now the third test brings up something. Did you have a blood test to start off or how did you get the camera test? Sorry for questions but it is very frustrating with no results or answers, thank you

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[Brunneria]

@Brunneria thank you. Did you miss the gluten from your diet? And did you replace it with anything else or find any good substitutes?

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

Well, I was already avoiding most gluten before this, because I have been low carbing for years. But I was still having the odd grain related treat (occasional slice of toast, or gravy on a Sunday dinner, kind of thing) and I would always have a mouthful of my husband's meal if we were out, and it looked nice.

So in some ways going gluten free was easy (already avoiding the biggies) and in some ways it was an absolute pain. I wanted to be absolutely strict for the first few months, so I could really track my symptoms. So that meant looking at every label. Did you know that some vinegars have barley in them? And Pringles have wheat starch, which is not gluten free. And some stock cubes are OK and others aren't... Fortunately, if I do make a mistake (like I did last week) then my symptoms are inconvenient but bearable, unlike a true Coeliac, who can be totally incapacitated and very ill.

On the other hand, it has really paid off because I love not having psoriasis, and being able to go upstairs without knee pain. That is worth every hassle.

You asked about substitutes, and I have to say that I rarely bother. Gluten free options in the supermarket are usually ridiculously expensive, not nearly as nice and have even more carbs in than the gluten version. But of course, that will depend on personal tastes.

 

[DCUKMod]

Hi @prickles1998 - I see you've been tested a couple of times already, without a definitive diagnosis, when that happened, were you advised to adjust your diet in any way?

My experience is a bit different in that I was strongly advised to adopt a GF diet irrespective of any diagnosis. The Endo's reasoning was that those who have one autoimmune condition, often have others lurking. Boy, that thought brightened my day!

moving on; because I was already eating a LC diet, (for me that meant no bread, pasta, grains), the Consultant expected a negative or inconclusive result. We agreed I would not gluten up for the tests, but to have the test then tweak my diet to go GF. I was happy enough with that, and that's what I did.

My Coeliac blood panel was negative, but by then I had adopted my GF lifestyle and carried on with it.

My gastric symptoms were extremely vague, with really only a bit of constipation, but after a couple of months GF I realised that I was feeling brighter, which was clearly a big win. On the downside, my sensitivity to gluten has clearly heightened in that if I trip up these days I really know about it.

If that happens I feel like I've been hit by a truck, with joint pains, a headache like a decent hangover, low mood, and after a few days it feels like I have a cannon ball in my lower gut, then after a further few days later it is clear exactly where that cannon ball went. (That's as polite as I can make it, without TMI.)

All in all, when I now have such an event, it takes about 3 weeks to be totally rid of it, so you can imagine I'm pretty vigilant these days!

Have you tried going GF for 2 or 3 months?

 

[prickles1998]

Wow great, thanks again definitely helpful!

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[prickles1998]

Hi,
No I was told just because it was not definite to not change anything however if I noticed a food affecting me to obviously avoid it.
It's very interesting your endo recommended that because I was never told to adapt my diet too much.
Your symptoms definitely sound like me at the moment so I'm hoping I get some answers. Since your test came back inconclusive did they mention any other possibilities or recommendations for your suffering?

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[prickles1998]

Well, I was already avoiding most gluten before this, because I have been low carbing for years. But I was still having the odd grain related treat (occasional slice of toast, or gravy on a Sunday dinner, kind of thing) and I would always have a mouthful of my husband's meal if we were out, and it looked nice.

So in some ways going gluten free was easy (already avoiding the biggies) and in some ways it was an absolute pain. I wanted to be absolutely strict for the first few months, so I could really track my symptoms. So that meant looking at every label. Did you know that some vinegars have barley in them? And Pringles have wheat starch, which is not gluten free. And some stock cubes are OK and others aren't... Fortunately, if I do make a mistake (like I did last week) then my symptoms are inconvenient but bearable, unlike a true Coeliac, who can be totally incapacitated and very ill.

On the other hand, it has really paid off because I love not having psoriasis, and being able to go upstairs without knee pain. That is worth every hassle.

You asked about substitutes, and I have to say that I rarely bother. Gluten free options in the supermarket are usually ridiculously expensive, not nearly as nice and have even more carbs in than the gluten version. But of course, that will depend on personal tastes.

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[prickles1998]

Also guys, if you are gluten free do you find it harder to keep BG up with less carbs in your diet?

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[Tony337]

Hi Tony, yes diarrhoea is a symptom for me too. I'm diagnosed around five and a half years now and they have suspected it was twice but the first time there was no test done and the second test was inconclusive, hoping now the third test brings up something. Did you have a blood test to start off or how did you get the camera test? Sorry for questions but it is very frustrating with no results or answers, thank you

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

Started off with bad guts.
GP sent me to specialist.
Had colonoscopy which was clear then had endoscopy (throat) which showed villi which are hair like strands which live in the intestines.
These were flat which meant I was coeliac.
They should be wavy apparently which slows down the transition of food to your bowels hence the diarrhoea.
The theory is you follow a GF diet and the villi return to normal.

Tony

 

[Kristin251]

I dont have celiac, nor does my daughter but we are both very gluten intolerant. She, more so than I as far as intestinal. She will buckle over in severe pain at the tiniest crumb. I just get very tired. Sad and moody, especially the next few days following. Corn anything is worse for me. That's where I get pain. All Grains in general don't work for me.
I was also told at DX to stay gf even though my celiac panel as negative.

I am vlc and just adjust my insulin accordingly. ( mush lower doses than when I eat carbs)
If you want more carbs there are plenty of other foods such as sweet potato or other root veggies.
I would highly recommend staying just as far, if not farther away from gf foods. They are almost worse than gluten. The ingred in the high protein rolls many in the forum make me cringe thinking about what that wouldndo to me.

When I was eating gluten many moons ago before low carb/grain free I ached everywhere, feet burned, cold sores, ears ringing, arthritis, exhausted 24/7. Gluten clogs your insulin receptors as well.

No gluten for me!!

 

[prickles1998]

Started off with bad guts.
GP sent me to specialist.
Had colonoscopy which was clear then had endoscopy (throat) which showed villi which are hair like strands which live in the intestines.
These were flat which meant I was coeliac.
They should be wavy apparently which slows down the transition of food to your bowels hence the diarrhoea.
The theory is you follow a GF diet and the villi return to normal.

Tony

Ok thanks, hope you're doing well!

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[prickles1998]

I do t have celiac, nor does my daughter but we are both very gluten intolerant. She, more so than I as far as intestinal. She will buckle over in severe pain at the tiniest crumb. I just get very tired and moody, especially the next few days following. Corn anything is worse for me. That's where I get pain. All Grains in general don't work for me.
I was also told at DX to stay gf even though my celiac panel as negative.

I am vlc and just adjust my insulin accordingly. ( mush lower doses than when I eat carbs)
If you want more carbs there are plenty of other foods such as sweet potato or other root veggies.
I would highly recommend staying just as far, if not farther away from gf foods. They are almost worse than gluten

Yes, I get the extreme pain too and every other symptom aswell, so this is why I'm pretty sure I'm atleast intolerant if not coeliac.

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

 

[Kristin251]

Yes, I get the extreme pain too and every other symptom aswell, so this is why I'm pretty sure I'm atleast intolerant if not coeliac.

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app

Many celiacs have no pain and no symptoms. The non celiac gluten I toleratant people generally show more symptoms.

My BIL is not celiac but was put on a gf diet because he wasn't absorbing vitamins and minerals. B12, D etc.
Apparently he thinks his one pizza night a week is still ok. ITS NOT LOL

 

[prickles1998]

Many celiacs have no pain and no symptoms. The non celiac gluten I toleratant people generally show more symptoms.

My BIL is not celiac but was put on a gf diet because he wasn't absorbing vitamins and minerals. B12, D etc.
Apparently he thinks his one pizza night a week is still ok. ITS NOT LOL

Ahh ok, lol

Sent from my SM-J320FN using Diabetes.co.uk Forum mobile app