I think I may have coeliac disease but havent been diagnosed- seeing consultant next week about results of endoscopy. Nausea stomach pain.

[anne-gussy]

I have had constant nausea and stomach bloating some cramps since Christmas. Nothing serious found so far with scan, blood tests etc. seeing consultant next week with results of endoscopy and another scan. I have no diarrhea or constipation does this sound like coeliac disease or more general 'ibs' symptoms. How long cutting out gluten before any effects take place.

[Regalbirdy]

Hi anne. if you have already had the endoscopy (and all other tests for Coeliac Disease are now complete), you can cut out gluten at any time you like to find out for yourself. As long as you eat a balanced diet, eating gluten-free is most unlikely to do you any harm (however a dietician appt is still a good idea). In my case once I'd had the camera down, I cut out gluten the very next day (I had unfinished business with a leftover pearl barley casserole the day of the endoscopy!).

I did this out of choice to see what would happen and in hindsight it gave me some control back over my condition. It may seem a little semantic but rather than having a gluten-free diagnosis imposed on me, it became my decision instead. I was then able to go back to the hospital armed with knowledge of the right questions I wanted to ask.

It only took a few days for some of my symptoms to subside. I found the bloating, the farting most of the stomach pain and diarhoea all went within a few days. However some of the other problems I have are taking or have taken longer to sort out. These include fatigue, depression and initially my B12 levels were also low.

I recently read somewhere (and perhaps other GFG's will add to this) that roughly 1 in 10 IBS diagnosis's are actually people who have Coeliac Disease and have been wrongly diagnosed. My understanding is that you don't need to have diarrhoea or constipation to have Coeliac Disease, the symptoms are so varied. I am one of the coeliac population who has lived with dental enamel defects all my life - probably not what you would expect as a symptom.

I hope you get the answers you are looking for from the medical profession. As many people here often say, listen to your body and go with that. Trial and error is sometimes no bad thing...

Good luck.

[FionaGFG Administrator]

Hi Anne,

Coeliac Disease causes a variety of symptoms as it is an auto-immune disease. As Regalbird rightly says many Coeliacs are mis-diagnosed with IBS for years before it is discovered that they have Coeliac Disease. IBS (as per NICE guidelines) should only be given as a diagnosis as a last resort once other more serious diseases and illnesses have been ruled out. So if any Dr you see tries to jump on the 'catch all IBS bandwagon' kick up a fuss and get them to talk you through what else they have excluded first.

Some Coeliacs have traditional symptoms (stomach problems) some like myself had none. What all Coeliacs generally have in common is that they have extreme fatigue, mood swings and bad teeth enamel. However, as I am sure you are aware only a Dr can diagnose Coeliac Disease via blood tests and an endoscopy. Note that a diagnosis of Coeliac Disease is only given when the small bowel biopsy shows totally flattened villi. That is why it can take a few years and many endoscopies before someone is diagnosed. Before Coeliac Disease some people will find they are gluten sensitive. Much more research has been done on this area in America. More is required in the UK as most Drs are still not very aware of it.

You don't mention what scans you had. Were these CT scans, or ultra sound scans of your torso and abdomen?

It may well be that the Dr will recommend you have a sigmoidoscopy to look inside the lower part of the bowel.

Make sure your Dr explains any results to you fully.

Normally Drs will want to rule out these problems with your symptoms:

- Coeliac Disease

- Colitis

- Crohn's

- NET (v rare)

- Helicobacter Pylori

- Stomach Ulcers

- Gynae causes i.e. Ovarian Cancer, Endometriosis

- Issues with the Pancreas or Spleen

- Pernicious Anemia

Ask the Dr if they have run blood tests to check:

- your Thyroid

- iron & ferritin levels

- B12 levels

- Vitamin D

The last 3 are often markers that something is wrong with the stomach and are commonly low in Coeliac Disease.

- CA125 blood test

- Anti- Nuclear blood tests

Keep us posted.

Useful links for you:

patient.co.uk/doctor/Helico...

patient.co.uk/health/Irrita...

patient.co.uk/health/coelia...

pernicious-anaemia-society....

netpatientfoundation.org/20...