Help after self diagnosis and some info from the Doctor!!!

[gailmk1]

I have had a terrible year, although suffered for years and years with IBS or so the doctors said, but 2011 has been a nightmare, I was hospitalised 2 for a week at a time, had my gall bladder removed, which was damaged, but then still had bad pains, my GP listened to what my diet was and suggested that I could be allergic to wheat, stopped eating it and it helped a bit, then he did a test for coeliac, it came back negative, but he says he felt I was in the percentage with coealic but it was not showing, so try a gluten free diet.

I have now been on this for about 2 months, it has certainly taken most of the pain away and I can eat food without running to the toilet all the time, but I am still left with a severe pain in my right shoulder blade which eases after burping, but is there almost constantly, also I have no energy, I want to sleep all the time and my mood swings are terrible.

Just would like to know if anyone else has come across these problems as well.

Many Thanks

Gailmk1 xxx

[sassyl]

Hey Gailmk1,

Fatigue sounds really familiar, as does many of your other symptoms. Have you taken all the gluten out of your diet? Are you really strict with your diet?

I would say that should be a starting point. Read the labels on EVERYTHING because gluten has a habit of creeping in there when you least expect it (ie. some yoghurts, hams, pre-cooked chicken, etc). Also if you are still cooking gluten for other family members then there is the big issue of cross contamination. If you can use different work surfaces for foods, and never cook them together.

Have you asked your doc for an endoscopy? This can diagnose coeliac or maybe look for something else. If your results came back low then there is probably internal damage that can take a long while to heal. (Is the pain under your right shoulder blade? That is where your small bowel starts and also where I get most pain if I am glutened).

If you get nowhere excluding gluten, the next place to look is probably lactose or a low FODMAP diet, which I would advise only doing with a dietician as it can be very restrictive.

Good luck, let us know how you get on.

[gailmk1 in reply to sassyl]

Hi Sassy,

Thanks for posting on this, thinking back a few days or so, I did toast some gf bread on our grill, and never thought about the fact that normal bread had been on it.

Got the docs this afternoon we will see what he says about it, I know for a fact that I could not go onto a normal diet for 6 weeks like they want you too, I would no be able to function, I was supposed to get another scan on my liver last year and they saw something when scanning my gall bladder but when the first appointment came in, I was too ill to travel and the second one came in after my gall bladder surgery so they would not do it as it was too soon, I think I need to check up on that and get it moving, I had so many tests last year I felt like I dont know what xxxx

[sassyl]

Toast will do it! Try toasting bags to stop contamination.

RE: endoscopy; if you've been off gluten for less than a year and are still having symptoms then there'd still be damage to your villi. Personally, I would book it and not bother eating gluten, just carry on doing what you are doing. I had a(nother) endoscopy last year after 9 years of GF diet. I'd been glutened twice from the work canteen with soya mince (4 months prior), and had snuck in a naughty bottle of Becks 6 months prior to the endoscopy; result - partial damage resulting from some gluten ingestion! Worth a try and worth knowing for sure it's gluten and not anything else I reckon. Good luck at docs!

[FionaGFG Administrator]

gailmk1 There is no way your Dr should ever have advised you go on a gf diet before the blood test for coeliac. Removing gluten from your diet makes it much more likely for a 'false' negative result ie as you aren't eating gluten you won't produce the anti-bodies even if you are a coeliac!

The process is:

- see Dr

- Do a food diary / or ask for coeliac blood test (whilst still eating gluten)

- Get results

- Depending on results & family history the Dr should then recommend a endoscopy ie even if your blood test is negative but your symptoms / family history suggests you may have coeliac disease

Do go back to your Dr and ask him to re-test you - after you've eaten gluten again (ie you can eat soy sauce/ gluten crisps/ the occasional pizza/ a slice of bread a day / over a 6 week period as most coeliacs will produce antibodies to these small levels).

Let us know what happens.

[Romany]

Hi there reading your Q you could easily have been writing about me!! I have also had a bad 2011..also had gall bladder removed, then got a kidney stone...was still running to loo shortly after eating and being sick also. Doctor has decided I am wheat/gluten intolerant. so have been on GF diet for about 2 months now and have seen a big improvement. About your shoulder pain I wonder if this is connected to your gall bladder removal as I know some people find shoulder pain for a while after the op although I myself did not have this problem. I am reluctant to go back to eating wheat/gluten to be tested for CD as would need to eat gluten for a min of 6 weeks and the very thought of being ill again just to have a diagnosis on medical records...no thanks!!.. I'll take the wheat/gluten intolerance diagnosis. I always use a toaster bag for cooking toast ...there are so many good ranges of food out there, I have found the gluten free breadcrumbs available in Sainsbury's very versatile and made chicken kiev using them and it was delicious. Good luck to you x