Coeliac: Symptoms not going away

missguided

I'm 18, I've been a coeliac since I was about 15. At the start I was very lax and would constantly eat things I wasn't supposed to, but now I stick rigidly to a GF diet. I have a separate toaster, butter/jam/marmalade to everyone else, along with cooking anything of mine in a dish or on tinfoil so no cross contamination occurs.

Despite this though, I have symptoms I had before I was diagnosed nearly every day. Chronic stomach pains, diarrhoea, constipation, constantly feeling tired and my stomach is unbelievably bloated. I've been to the doctor countless times, usually about stomach pains, but nearly every time I'm prescribed something which really doesn't help me. I'm taking tablets daily for it, but they don't seem to help much.

After nearly all meals I have to rush to the toilet with stomach cramps and it's not pleasant to say the least. I'm not eating anything that isn't gluten free so i don't see where it's coming from..

Has anyone else experienced anything like this? After I got the results of the biopsy I was told it would take a few months for the symptoms to go away, but not this long. Or could it be something totally unrelated to the coeliac disease?

sunnyview

I am not a coeliac OP but was following a gluten free diet for ages before moving on to the low fodmap diet. Do you eat any of the processed gluten free foods like the breads or biscuits? I realised a lot of the added ingredients in gluten free food like inulin affected me so much that they ruined any of the benefit I should have gotten from being gluten free? It might not be relevant in your case but just incase......

Spook_ie

None of us are really qualified to guess what the problem is, however, I will tell you that we have a 15 year old who was diagnosed with Coeliac Disease 4 years ago, he has his bloods checked once a year by our GP to check his antibody levels and if I wasnt happy with any aspect of his condition, I would ring his Gastroenterologist for a review. I dont know if when you mention that you have been to your doctor, whether you are referring to a GP or a Consultant ?

Northern Monkey

The symptoms are very similar to those of other bowel diseases (IBS, Crohn's and Colitis).

I suffer from chron's myself, but would have a different diet to yours to avoid symptoms (low fibre, avoid fruit with skin, nuts, tomatoes, spicy food), but everyone is different and one diet might work for one person and not another. At the start I kept a food diary and listed everything I was eating and if it caused any symptoms to the point I got to know what I could eat and what to avoid.

As mentioned above, have you seen a Gastroenterologist?

missguided

sunnyview wrote: »

I am not a coeliac OP but was following a gluten free diet for ages before moving on to the low fodmap diet. Do you eat any of the processed gluten free foods like the breads or biscuits? I realised a lot of the added ingredients in gluten free food like inulin affected me so much that they ruined any of the benefit I should have gotten from being gluten free? It might not be relevant in your case but just incase......

Yeah I eat the GF bread/biscuits/pasta, I know they're heavily processed but I honestly don't think I could survive on a diet without them, I'm already restricted enough in what I can eat I'll look into it though, thanks for the advice

missguided

Spook_ie wrote: »

None of us are really qualified to guess what the problem is, however, I will tell you that we have a 15 year old who was diagnosed with Coeliac Disease 4 years ago, he has his bloods checked once a year by our GP to check his antibody levels and if I wasnt happy with any aspect of his condition, I would ring his Gastroenterologist for a review. I dont know if when you mention that you have been to your doctor, whether you are referring to a GP or a Consultant ?

Sorry for not being clearer, I'm referring to GP. I'm probably going to go to the gastroenterologist soon though, as I haven't been since I got the results of my biopsy