Cut gluten out since March

[Moonogluten]

Hi, I’m 21 years old and was clinically diagnosed with coeliac disease at the end of May 2017. Previous to this I have always suffered with chronic constipation which resulted in many other queries with hospital tests that diagnosed me with a weak bladder (which I do not have) and was put on bladder tablets for two years. During these tests it was also discovered that I had a gall stone. I was 14/15 years old and the doctor had emphasised that it was strange for someone my age to have one. This was never looked into but I had my gall bladder removed. When we moved house at the age of 18 I had a blood test when signing up to a new doctors, this showed that I was severely deficient in vitamin d and had high levels of potassium. I was put on vitamin d tablets which corrected this. Although I then became magnesium deficient and had a summer of feeling very anxious, had some panic attacks and was very unlike myself. I then moved into my second year of university after that summer and experienced pain and severe bloating most nights. I gained weight and did not feel very comfortable. This continued for two years before started writing a food diary which led to me cutting out gluten. This worked and made me feel so much better. A family friend then said I think you should go get checked at the doctors to rule out coeliac disease. When going to the doctors I described my symptoms (rash on both arms, bloating, constipation, deficiencies and a gall stone) with which she said it sounds like coeliac. She ordered a blood test and said to eat gluten for the week before it. I had two mini scotch eggs to which the rash on my arms came back badly and I was up the entire night with feeling sick intense stomach pain, bloating and acid reflux. The next day the bloating went down but my insides felt very burnt and the acid reflux continued. I knew that I could not eat gluten for the entire week so thought I would just see what the blood test said. The blood test came back negative although showed raised liver enzymes. The doctor said she would still say I have coeliac disease and that we should repeat another blood test in August to check my liver enzymes. Then for about a week I felt severely sick and had a bad headache, no energy and a temperature and the doctor told me to go to a&e they had another look at my liver enzymes but said they had stayed the same so we’re not worried. I was given an iv drip but then sent home with the doctors saying they suspect I must have accidentally eaten some gluten. The sickness continued for a few more days and then passed. Although for the last two days I have now begun to experience pain down my right side where my liver is. Sorry for the long story but thought I would just get it all out there and see if anyone has experienced anything similar! Thank you

[Karen49]

I had similar experience, turned out to be appendicitis

[Moonogluten in reply to Karen49]

We have looked into that but hoping it’s not!!

[Karen49 in reply to Moonogluten]

I'm sure it's not, but just to say, I had exhaustive tests (CAT scans, Xrays, Endoscopy, Capsule endoscopy), all of which came to nothing because the appendix had burst and my body tried to repair itself by turning it into a massive abcess. All because I didn't present text book symptoms

this is of course the worst case scenario but maybe mention it to your GP as this is not uncommon

[FFNick]

Be careful we each have different reagents. Take advice from none specialists, do not follow slavishly their opinion. IMHO dieticians are the worst or best. Work out what you can eat yourself.

What took me ages to identify were cooking oil (blend of oils), caramel (burnt which sugar?) and coffee for me.

Like you I went GF before testing. Not found this any hindrance except convincing hospital that toast and breakfast cereals are not for me. Noticed Hospital dietician and caterers kept out of range of me wounding them. Any closer I would have maimed someone.

[ChrissiH]

Hi, if you have already cut-out gluten then the antibodies wont show up in a blood test, which is why your doctor told you to eat it for the week before. You really need a scope to get a clinical diagnosis, so perhaps your doctor can ask for a referral seeing how you were hospitalised from eating gluten - have to say that's very rare in my experience and could well be something else which is why a referral to a gastroenterologist seems a better idea. Good luck!

[Mgz234]

I have had a similar experience. I had severe constipation between the ages of 12 and 18 before then changing rapidly to continuous upset stomachs at the other extreme. I reported this to the doctors but they didn't think it was anything. About a year later I was diagnosed with gallstones when I was 19 but chose not to have the opp as the pain does not bother me so much now that I don't eat as much milk and cream and fatty foods etc late in the evening (which is often what triggered it). At Easter I started to cut out gluten as suggested by my doctor (who thought it might be IBS) which worked well for the first couple of weeks but I have now found that dairy is causing a problem as well... My main problem is that my family think I am being silly and fussy and it is so difficult to be social with family when it comes to food. Does anyone else feel like no one takes them seriously when it comes to this?

[Moonogluten in reply to Mgz234]

Sounds like yours could be CD as well... I know that people with CD often develop a dairy indolence I have felt so much better since eating less of it!! I know what you mean about social situations but if you stress that it is breaking down your gut and therefore essential that you do not eat any wheat or gluten then I’m sure they will understand I have found people to be very supportive once they understand and the majority of restaurants and cafes have a gluten free menu available! Good luck I’m sure it will get easier x