my story so far!

[Guest]

Hi everyone!

Hopefully this is the right place to post this! Just wanted to post my story on here for anyone who needs some reassurance/anyone who can give me some tips!

I’m 22 and from the UK, I’ve been type 1 diabetic since I was 13 and have always taken it in my stride. 

This year the pandemic hit and I was fortunate enough to be placed on furlough so I just spent my time at home with my family. At the beginning of the pandemic I was exercising a lot as I am very active, I liked to take the dogs out for long walks just so I could get out of the house! 

One morning in June I woke up in the middle of the night and my stomach was making crazy noises just like trapped wind, I got up and used the bathroom and tried to go back to sleep but the pain in my stomach would not subside and I started to get dizzy, pale and nauseous and ultimately was sick. 

I had just assumed it was something that I had eaten although my diet was completely unrestricted I have always eaten the same foods. The next day I had stomach pains but not too badly and carried on as normal. (Also throughout this whole summer I had been eating ryvita for lunch every day to be ‘healthy’ which is soooo laughable now) 

Throughout the summer I then started to have strange dizzy spells which I always put down to the heat or anxiety - although I’m thankful enough to not have any anxiety with work/home etc I just thought it was maybe underlying?! I also have suffered with travel sickness since I was younger and was becoming travel sick on journeys that lasted 5 minutes. 

Once I was able to go back to work I would walk to work and start to feel like I was about to pass out, I always tried to talk myself out of it using anxiety techniques but nothing seemed to work. I also used to get to work and start to feel really shaky and I would get hypoglycaemia symptoms but would go to check my blood sugars and they would be normal! 

Fast forward to the 11th of December and the sickness that I had previously happened again in exactly the same order although this time it didn’t go away. I did a 24 hour fast incase it was a sickness bug and felt completely fine from not eating.

I booked a doctors appointment anyway and he did blood and urine tests and checked my stomach and decided to get me a pelvic scan to make sure everything down there was okay and I didn’t have any growths etc.

I went back to work but had to keep leaving early because I had really awful pains in my chest it felt sort of tight and hot and every time I tried to eat it was like my body would not let me swallow it!

On the way to the scan I was so unwell, I was shaking and had tingly hands, I could barely drink enough water to have it done! On the way home I seriously thought I was going to die, it felt like my body was completely shutting down. I asked my mum to go to Tesco and pick me up some bananas as I know they’re filling and I got home and had a banana and some glasses of milk just so I had something in my body. I looked into celiac and the next day we went and bought some gluten free foods. I told my doctor about this and he told me not to go gluten free as they need to do tests and he would try and add a celiac test onto my previous blood test. Also during this time I was rapidly losing weight, I lost 1 stone in 7 days. 

This is when all chaos ensued. I won’t go into huge details but I’ll give you a basic idea about what happened. 

 

I had to visit A&E 4 separate times.

1st time - the doctor essentially laughed in my face. He sent me home with omeprazole for heartburn. I went home and took these and had no relief in the slightest.

2nd time - I was taken through to a bed and I was placed on a drip and seen by a doctor, she was horrendous. I told her that it feels like my body was shutting itself down and she told me I needed to ‘stop speaking in third person’ I told her I keep my blood sugars under really tight control and she tested them and they were high (OBVIOUSLY because of stress and illness) and she told me that I did not have good blood sugar control. I was so upset by this as I wasn’t being listened to and two more nurses came over and tried to tell me that I was just having mood swings. I was completely livid.

3rd time - I was taken into a triage ward where they did some tests on me, everything came back fine and a doctor came in and felt my stomach. He (without any doubt in his mind) told me that I had gastroparesis. I was shocked, I was asking questions etc and he just told me it will go away and come back from time to time. I was in hospital alone due to Covid restrictions so I was Googling everything so I could to get a crumb of information and was so scared it was horrific. I was given anti nausea tablets and was told I was staying the night. My diabetes nurse came in in the evening and made them do a test for low cortisol just to rule some more things out. She said she did not think it was gastroparesis but it could either be this or celiac as obviously being type 1 diabetic makes this a fairly good candidate. It gave me some relief and the next day I was out of hospital and back home.

My diabetes nurse called me and told me they think it’s low cortisol so put me on hydrocortisone and fludrocortisone tablets and said she would be in touch. This was the 24th of December so I rushed to pick up my prescription and started them on Christmas Day. As soon as I started them it felt like I was having a panic attack but I’m not sure if this was a side effect or nerves or even because it’s to do with the adrenal glands maybe my body was in fight or flight mode?!

Anyway, due to the fact that it was Christmas and New Years my diabetes team and doctors were all closed because of bank holidays and weekends etc. I did not think the tablets were helping me although I still took them when I was supposed to. 

4th time- I then felt so unwell again, shaking, nausea, unable to sleep, my stomach was making the most insane noises. I would be asleep and then jolt myself awake after an hour. I really thought my body was shutting itself down and that I was going to die. I went back up to A&E and was put on a drip again, I talked to a doctor and this is no word of a lie, he told me that I should get myself a personal trainer to reverse my diabetes? Like I could just grow myself a new pancreas!! I asked him to do an endocrine test and he said he couldn’t, nothing is wrong and that my blood pressure was fine - I literally felt like I was talking to a brick wall so I asked to take the cannula out of my arm and to go home. They said that I had to stay, some of the nurses were really supportive and couldn’t believe the doctor had said that and that I should contact my diabetes clinic as soon as they reopened. They gave me a tuna sandwich on wholemeal bread which after eating I felt shaky and weird again.

I went home and had an awful nights sleep again, woke up and tried to call my clinic but they didn’t answer, I was getting more and more frustrated and more and more unwell. 

I was also told that they hadn’t received the blood test so I phoned my doctor and told him I need a celiac blood test ASAP and he told me he was free in 10 minutes so I grabbed my things and headed down. He took the blood from my arm and I told him from this point forward I’m going to be eating gluten free. He told me that the blood test is very temperamental and that it might come back negative and they would want to do a endoscopy. I told him in the nicest way possible that it won’t be happening as I’m going to be gluten free from this day forward no matter what the test says, I will not compromise my health just for the sake of a positive test and I won’t be doing the gluten challenge so if it comes back negative that he will have to manually type in that I have celiac disease. 

So far I am now 5 days gluten free and wow I can honestly say I am feeling 80% better than I did before. Obviously it takes time to get better but I’d say after 3 days the weird digestion feeling I was getting had stopped. I am still taking the steroids but have an endocrine test on the 15th so fingers crossed it won’t be a cortisol issue and I can come off of them. 

We went out and bought a new toaster and all sorts of kitchenware and have sectioned a space in the kitchen for all of my things. At first it was overwhelming but I used this platform to read positive stories and it really settled my mind. 

I’m going to list my symptoms in the hope it may help/reassure somebody else?! 

-nausea

-shaking/internal tremors

-tight chest/extreme acid reflux feeling

-muscle weakness

-stomach noises/extreme intestinal movement 

-heart palpitations

-loss of appetite 

-dry mouth

-mild diarrhoea 

-lightheaded when standing up

-lower abdominal cramps

-unable to sleep 

I don’t have my appetite back yet all though I’m still eating on schedule and I am still getting the shakes/tremors and very mild heartburn from time to time but I think this could be from the tablets that I’m taking.

Also for anyone new who may be reading this, food wise simple things like boiled eggs, tuna, gluten free toast and Nutella, mashed potato have really been a good start to help my stomach. I have also decided to cut out lactose for the first 3 months as I read somewhere that this is meant to help with healing as your villi cannot absorb it?! Also I bought some of the Alive multivitamin gummies from Holland and Barrett (they say gluten free on the back of the packaging) and these have been helping me also!! I’ve got a really positive mindset on this now and I think I’m going to be okay!! 

Obviously I still have to have my endocrine test and will post an update on that but I just wanted to share my story in the hopes that someone who is maybe going through something similar can get some reassurance that everything is going to be okay and the supermarkets have so many good food options that you’ll be spoilt for choice!! 

Sorry it’s so long!! Thanks for reading and if you have any tips/ tricks let me know

Ellis

[trents]

Welcome to the forum, Ellis!

Sounds like you are on the right track now. You have other health issues in addition to probably celiac disease so it will take awhile to get things balanced out, meds tweaked, etc. Glad you are already feeling so much better. I applaud you for taking the bull by the horns and appropriately asserting yourself with your GP doc. Keep us posted.

[GFinDC]

Hi Ellis,

Good for you going gluten-free.  Doctors can be a little clueless at times.  T-1 diabetes is associated with celiac disease.  I think with any combination of conditions the overlapping symptoms can be confusing.  Especially with celiac disease since there are so many possible symptoms related to celiac.  You sure sound like you have celiac to me though.

You don't have to get diagnosed with celiac disease formally.  The gluten-free diet is the same regardless and is the only treatment right now.  Yes, there are lots of gluten-free food options in stores now.  But for starting out on the gluten-free diet it is better to avoid the processed foods.  Also avoid dairy (you are doing that) and oats.   Staying away from sugar and carby foods like potatoes and rice is helpful too.

[Scott Adams]

Welcome to the forum, and it sounds like you are on the right path now. Your symptoms sound a lot like what I went through during my final 2-3 months before going gluten-free. 

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