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

[dancer]

I was tested for coeliac disease at my annual review and was then referred to a gastroenterologist. He asked lots of questions and eventually said that, along with my osteoporosis diagnosis, the fact that I had to defecate 6 or 7 times per day (not diarrhoea) told him I was most likely coeliac. He said he would confirm this with an endoscopy and I should eat the equivalent of 2 slices of bread each day. I normally only had 3 or four slices per week, so that was a big change. If I had pasta, I could cut out a slice of bread. I was lucky that the increase in gluten didn't affect me.

I went gluten free a couple of weeks after the endoscopy, as my consultant told me that, from what he had seen, he was sure I had CD, even without the lab results (he was right.)

I've now been gluten free for 18 months and have noticed no change whatsoever. I had hoped that I would feel less tired but my DSN said the tiredness could be due to diabetes and not CD.

I'm still going to the toilet as often as before, which seemed to bother my consultant, as he asked if I was sure I was totally gluten free.

Being GF isn't a problem at home. Cafes and restaurants are getting better but even if the ingredients are gluten free, there is the risk of contamination (e.g. being fried in the same oil as gluten food, like battered fish).

I miss bread, especially in Italian restaurants. The best GF bread I've found is from M&S but I must admit that I generally have GF oatcakes instead of bread.

Being GF has made no difference to my blood sugars/insulin doses (other than initial tweaks when my gut started healing.)

Remember, if you've to have an endoscopy, don't reduce your gluten intake beforehand, or it'll be a rather unpleasant waste of time.

 

[Kristin251]

I was tested for coeliac disease at my annual review and was then referred to a gastroenterologist. He asked lots of questions and eventually said that, along with my osteoporosis diagnosis, the fact that I had to defecate 6 or 7 times per day (not diarrhoea) told him I was most likely coeliac. He said he would confirm this with an endoscopy and I should eat the equivalent of 2 slices of bread each day. I normally only had 3 or four slices per week, so that was a big change. If I had pasta, I could cut out a slice of bread. I was lucky that the increase in gluten didn't affect me.

I went gluten free a couple of weeks after the endoscopy, as my consultant told me that, from what he had seen, he was sure I had CD, even without the lab results (he was right.)

I've now been gluten free for 18 months and have noticed no change whatsoever. I had hoped that I would feel less tired but my DSN said the tiredness could be due to diabetes and not CD.

I'm still going to the toilet as often as before, which seemed to bother my consultant, as he asked if I was sure I was totally gluten free.

Being GF isn't a problem at home. Cafes and restaurants are getting better but even if the ingredients are gluten free, there is the risk of contamination (e.g. being fried in the same oil as gluten food, like battered fish).

I miss bread, especially in Italian restaurants. The best GF bread I've found is from M&S but I must admit that I generally have GF oatcakes instead of bread.

Being GF has made no difference to my blood sugars/insulin doses (other than initial tweaks when my gut started healing.)

Remember, if you've to have an endoscopy, don't reduce your gluten intake beforehand, or it'll be a rather unpleasant waste of time.

You may have other food intolerances. Other grains, carbs in general ( exhaust me) nightshade vegetables, eggs, nuts , dairy are very common. In fact gluten and dairy generally go hand in hand. They have the same protein molecule and the body perceives it as gluten. Also known to need to have a bathroom close.

 

[prickles1998]

I was tested for coeliac disease at my annual review and was then referred to a gastroenterologist. He asked lots of questions and eventually said that, along with my osteoporosis diagnosis, the fact that I had to defecate 6 or 7 times per day (not diarrhoea) told him I was most likely coeliac. He said he would confirm this with an endoscopy and I should eat the equivalent of 2 slices of bread each day. I normally only had 3 or four slices per week, so that was a big change. If I had pasta, I could cut out a slice of bread. I was lucky that the increase in gluten didn't affect me.

I went gluten free a couple of weeks after the endoscopy, as my consultant told me that, from what he had seen, he was sure I had CD, even without the lab results (he was right.)

I've now been gluten free for 18 months and have noticed no change whatsoever. I had hoped that I would feel less tired but my DSN said the tiredness could be due to diabetes and not CD.

I'm still going to the toilet as often as before, which seemed to bother my consultant, as he asked if I was sure I was totally gluten free.

Being GF isn't a problem at home. Cafes and restaurants are getting better but even if the ingredients are gluten free, there is the risk of contamination (e.g. being fried in the same oil as gluten food, like battered fish).

I miss bread, especially in Italian restaurants. The best GF bread I've found is from M&S but I must admit that I generally have GF oatcakes instead of bread.

Being GF has made no difference to my blood sugars/insulin doses (other than initial tweaks when my gut started healing.)

Remember, if you've to have an endoscopy, don't reduce your gluten intake beforehand, or it'll be a rather unpleasant waste of time.

Yes eating out is going to be a slight problem but I agree it is getting better, and at home it just means more searching around and organising unfortunately. I also find I'm hugely tired but I do associate that with my type 1 too (idk how it causes you to be so tired but it does haha)

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[dancer]

You may have other food intolerances. Other grains, carbs in general ( exhaust me) nightshade vegetables, eggs, nuts , dairy are very common. In fact gluten and dairy generally go hand in hand. They have the same protein molecule and the body perceives it as gluten. Also known to need to have a bathroom close.

Thanks @Kristin251 , I know that CD can come with other food intolerances but, as I don't actually have to be close to a toilet, I don't feel ready to cut anything else from my diet . . . Maybe, given time, I will try cutting out dairy products.

 

[Robinredbreast]

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!

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Thanks @noblehead for the tag.
Hi @prickles1998 I am not gluten intolerant, but have Coeliac disease and had blood tests ( comes in two parts) and two endoscopies. After being diagnosed, I felt so much better, I was so ill for months, with vomiting, nausea, upper abdominal cramps (severe at times) weight loss and diarrhea, You must make sure you eat wheat/gluten about 6 weeks prior to the test, if not ,you may get a false negative result. Good luck and I hope you start to feel better very soon. Take care x

 

[Tony337]

I was tested for coeliac disease at my annual review and was then referred to a gastroenterologist. He asked lots of questions and eventually said that, along with my osteoporosis diagnosis, the fact that I had to defecate 6 or 7 times per day (not diarrhoea) told him I was most likely coeliac. He said he would confirm this with an endoscopy and I should eat the equivalent of 2 slices of bread each day. I normally only had 3 or four slices per week, so that was a big change. If I had pasta, I could cut out a slice of bread. I was lucky that the increase in gluten didn't affect me.

I went gluten free a couple of weeks after the endoscopy, as my consultant told me that, from what he had seen, he was sure I had CD, even without the lab results (he was right.)

I've now been gluten free for 18 months and have noticed no change whatsoever. I had hoped that I would feel less tired but my DSN said the tiredness could be due to diabetes and not CD.

I'm still going to the toilet as often as before, which seemed to bother my consultant, as he asked if I was sure I was totally gluten free.

Being GF isn't a problem at home. Cafes and restaurants are getting better but even if the ingredients are gluten free, there is the risk of contamination (e.g. being fried in the same oil as gluten food, like battered fish).

I miss bread, especially in Italian restaurants. The best GF bread I've found is from M&S but I must admit that I generally have GF oatcakes instead of bread.

Being GF has made no difference to my blood sugars/insulin doses (other than initial tweaks when my gut started healing.)

Remember, if you've to have an endoscopy, don't reduce your gluten intake beforehand, or it'll be a rather unpleasant waste of time.

Hi Dancer
I had further tests after coeliac diagnosis as my bowels improved slightly but not a lot.
I ended up with a SEHcat scan and through this I was diagnosed with Bile Acid Malabsorption.
Its not well known in the UK and is often misdiagnosed as Irritable bowel syndrome.

Regards
Tony

 

[dancer]

Hi Dancer
I had further tests after coeliac diagnosis as my bowels improved slightly but not a lot.
I ended up with a SEHcat scan and through this I was diagnosed with Bile Acid Malabsorption.
Its not well known in the UK and is often misdiagnosed as Irritable bowel syndrome.

Regards
Tony

Thanks @Tony337, that's something I could investigate more.

 

[DCUKMod]

You may have other food intolerances. Other grains, carbs in general ( exhaust me) nightshade vegetables, eggs, nuts , dairy are very common. In fact gluten and dairy generally go hand in hand. They have the same protein molecule and the body perceives it as gluten. Also known to need to have a bathroom close.

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?

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Sorry, I missed your reply as you hadn't tagged me, but no matter, I found it anyway.

It was all a bit bizarre, as we had been discussing my medical history, and that of my family. There were significant AI related conditions on both sides; some of which I had recognised and also a new realisation on my paternal side, as I had previously been told, emphatically, that the extremely rare condition that killed my father and a cousin was absolutely random and that it was unheard of for family members to be affected. These days it is recognised as an AI condition, but also the familial links.

Anyway, having gone though all of the the Endo asked, in a chirpy way, which of the bunch I had, so far. He was astonished to learn I had nothing, so set about testing me for all sorts from AI Thyroid Disease, to RA, to Vasculitis, to Coelic to Raynauds, to Lupus, with lots of hormone related stuff thrown in. There were about 20 tests on the request form. At that point he recommended going GF.

As everything came back either negative of inconclusive and I almost had to resuscitate the dear man. He couldn't believe it.

Although it is frustrating to have gone no further towards a diagnosis for my symptoms (which are nothing to indicate gluten intolerance or Coeliac), I do know that, for now at least, I have managed to dodge the AI bullets.

In the meantime, I've just done my second 24 hours urine collection, firstly for a Cortisol screen and most recently Catecholamine testing. If this last one is also normal, I'll be off to the Rheumatologists to see if I have" a weird presentation of something like Raynaud's Syndrome", to quote to Endo who was still trying to recover from his chin hitting his desk.

Oh joy. Just as well I don't have a life to be getting on with.

 

[prickles1998]

Sorry, I missed your reply as you hadn't tagged me, but no matter, I found it anyway.

It was all a bit bizarre, as we had been discussing my medical history, and that of my family. There were significant AI related conditions on both sides; some of which I had recognised and also a new realisation on my paternal side, as I had previously been told, emphatically, that the extremely rare condition that killed my father and a cousin was absolutely random and that it was unheard of for family members to be affected. These days it is recognised as an AI condition, but also the familial links.

Anyway, having gone though all of the the Endo asked, in a chirpy way, which of the bunch I had, so far. He was astonished to learn I had nothing, so set about testing me for all sorts from AI Thyroid Disease, to RA, to Vasculitis, to Coelic to Raynauds, to Lupus, with lots of hormone related stuff thrown in. There were about 20 tests on the request form. At that point he recommended going GF.

As everything came back either negative of inconclusive and I almost had to resuscitate the dear man. He couldn't believe it.

Although it is frustrating to have gone no further towards a diagnosis for my symptoms (which are nothing to indicate gluten intolerance or Coeliac), I do know that, for now at least, I have managed to dodge the AI bullets.

In the meantime, I've just done my second 24 hours urine collection, firstly for a Cortisol screen and most recently Catecholamine testing. If this last one is also normal, I'll be off to the Rheumatologists to see if I have" a weird presentation of something like Raynaud's Syndrome", to quote to Endo who was still trying to recover from his chin hitting his desk.

Oh joy. Just as well I don't have a life to be getting on with.

Wow, so much information to take on from everyone in hospitals I know!
Same feeling as me, waiting for something else haha

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[DCUKMod]

Wow, so much information to take on from everyone in hospitals I know!
Same feeling as me, waiting for something else haha

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

Prickles - What are your next steps, relating to this issue? What happens next for you?

 

[prickles1998]

Prickles - What are your next steps, relating to this issue? What happens next for you?

At the moment I am eliminating things from my diet an noting what causes my symptoms etc. Trying to find patterns. Hoping to go to the doctors also maybe to get some bloods done along with my Hba1c to try and see if anything shows up abnormal there. Does anyone have any experience with various intolerance tests that pharmacies offer? I am also contemplating trying one of those. Any comlementary therapies that are affective? At the moment trying everything!

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[DCUKMod]

At the moment I am eliminating things from my diet an noting what causes my symptoms etc. Trying to find patterns. Hoping to go to the doctors also maybe to get some bloods done along with my Hba1c to try and see if anything shows up abnormal there. Does anyone have any experience with various intolerance tests that pharmacies offer? I am also contemplating trying one of those. Any comlementary therapies that are affective? At the moment trying everything!

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Have you tried eliminating all gluten yet? If so, how long for so far?