Hi everyone! So as I said in my last post, I finally got my gastroenterology appointment. I was so nervous to go and didn’t really know what to expect, especially as my blood test from the doctors came back negative.
When I was called in, the Doctor was so nice and really understood how I was feeling. He explained to me that the blood test my GP did was a standard allergy test and can often be wrong, because of this he was going to do a different test to see if I have the Coeliac gene. This is a gene that you inherit, so if you haven’t got the gene then it’s not possible to have Coeliac disease, however if the gene is present then you may or may not have it and further testing will be done.
He decided to do a gene test first to see if we can rule it out before putting me through an endoscopy unnecessarily. He also wanted me to bring in a stool sample to test for Chron’s disease as my symptoms were similar. Further research into Chron’s disease ( I didn’t know anything about it) told me that the two are very closely linked.
It was all very overwhelming, with a lot of information to take in, but still positive because I was finally moving in the right direction! The doctor was very helpful and was very good at understanding what I was trying to say. When I was trying to explain how my stomach pains felt, I definitely struggled, they aren’t like normal stomach pains and I just didn’t know how to explain them but he knew exactly what I meant and that really made a difference to me. Many other doctors I’ve had, would have made me feel stupid and fobbed me off, saying it was just constipation.
Having a good doctor that listens and makes you feel important, makes you feel so much better, especially because I haven’t had the best of luck with doctors throughout my health journey. I was very grateful for how much he helped me and explained things in terms I would understand, so my outlook on Doctors started to get a lot more positive after this appointment and with the Doctor I had in A&E. It’s funny how those experiences stick with you. He also helped me realise that I actually had a lot more symptoms than I thought. The way I was feeling became so normal to me that I didn’t even realise that I actually shouldn’t be feeling that way. Some of the abnormal symptoms I have that have become my norm are as follows:
- Muscle and joint pain
- Extremely bloated stomach
- Painful stomach cramps
- Constant headaches
- Weakened immune system
- Extreme tiredness
- Brain fog
- Pins and needles in hands and feet
- Constipation/Diarrhoea
This really helped me feel more positive, like I wasn’t imaging my symptoms. I came away from the appointment feeling relieved that someone knew what I was going through and I was getting help at long last. That feeling really sticks with you, after being disappointed for so long.
So all I had to do now was sit, wait and keep eating gluten. The Gastroenterologist stated that it was very important to keep gluten in my diet as this is the only way to get an accurate reading. This was probably the hardest part of my health journey, I nearly gave up so many times but the thought of not getting a proper diagnosis and still not knowing whats wrong with me outweighed the suffering of all the symptoms.
If you’re in this same position, I know how hard it is, don’t give up! I had to keep eating gluten for 8 months all the while knowing it was making me ill. I understand how silly this sounds and trust me I was angry and I wanted to take that anger out on the doctors. How can they make someone wait that long to get a diagnosis? A diagnosis that relies on the patient to keep putting the harmful foods into their bodies until it’s done. It was hard, very hard. It definitely affects you’re mental health and I really did struggle. You’re essentially eating to feed your hunger and survive but poisoning yourself at the same time.
I had to remind myself, it’s not their fault they just have to follow the procedure and there’s no other way to test for it so it has to be done. The endoscopy is designed to look at how your body reacts to gluten, so it has to be in your system. Hopefully someone will invent a new way to do it one day. We can hope!
I finally got the call back from the Gastroenterologist, who told me that I do have the gene for Coeliac disease, so he put me on the waiting list for the endoscopy. He also said the test for Chron’s disease came back negative, This was a huge relief ! I was finally one step closer to finding out what was wrong with me, in turn being able to cut out the gluten and the fact I didn’t have Chron’s disease is always a bonus 😂
It took a long time to get the endoscopy appointment, they put me on the emergency list as I was so ill, to avoid the waiting time of the regular waiting list but when they told me it was still 7 months long I went mad! I was already making myself so ill eating this gluten but they wanted me to do it for another 7 months?? When I questioned it they told me the normal waiting list was 2 years, so I just had to accept it. I still hope they find a better way to diagnose patients.
I finally got the endoscopy appointment in December, just over a year ago now, and I still remember the excitement. It’s funny how a hospital appointment can make you feel that way. I just remember thinking maybe I will be able to feel better for Christmas and that’s was the best feeling ever!
I’ll write about my endoscopy experience in my next post, I hope you enjoyed reading this post.
Wishing you all positive vibes x
The Butterfly Effect 