Results of Consultation

fatbuster205 · Post by **fatbuster205** » Mon Jul 16, 2012 1:55 pm

OK! I love my consultant! It is official! He listens, takes me seriously, doesn't belittle me and answers every question! I was in for nearly an hour - believe me that is pretty unusual in the NHS!
We discussed what has been going on, how I have been feeling on all fronts including the pain, fatigue and generally the emotional and physical roller coaster. I showed him the article about "When the villi have all gone!" - he did note that it dates to 2003 - but he said he was familiar with the research and indeed more up to date developments.
We discussed the caeliac/gluten intolerance scenario and he has repeated the blood test along with some other bloods. However, he is concerned about the inflammation which has definitely increased. He reassured me that the constipation is common with MC - oh and he confirmed I have both CC and LC - but suggested that the constipation may well rule out caeliac although not necessarily gluten intolerance. However, he wants to take things one step at a time because if we do everything all at the same time i.e. go GF etc, they may not identify the exact cause as to why I am not getting remission. Of course I can hear you all saying but if you go GF now it will resolve!!
So, he is putting me on prednisolone 40mg for a week, then 30mg for a second week and if all is improving then budesonide 9mg for 6 weeks then reducing gradually. I have had problems with steroid treatment in the past - muscle cramps in my hands and feet, nausea etc but I said I would do anything to get improvement! He is concerned that I am still impacted as I am still getting sporadic intermittent pain in the ascending colon. So I had a second X-ray and he is going to phone me tomorrow with the results - again really unusual with the NHS. If it shows impaction then I will need to take movicol and he warned me against taking over the counter constipation remedies which could cause acute pain. Depending on progress, he may do a camera test for caeliac and then we take it from there. If I can get my symptoms under control I am happy to follow his advise and do things at his pace. He explained that going GF is a major step and we need to be sure that we have explored all the options first. I did emphasize that I will do anything to get well and stay well. He also said that if things get acute again I am to contact them immediately.
In the meantime I will be in close contact with the GP - probably every two weeks initially to monitor how I get on with the steroids. So, I am feeling more positive - although I will admit to being apprehensive about the steroid treatment and weight gain given I have spent 10 months losing 39lbs and am 16lbs from my goal weight! How do I ensure that I do not gain weight?

Post by **tex** » Mon Jul 16, 2012 4:57 pm

Anne wrote:How do I ensure that I do not gain weight?

I'm not aware of any practical way to control that. It depends on how your body handles corticosteroids.

The easiest (least intrusive) way to rule out coeliac disease is to do a DNA test to see if you have either of the coeliac genes. If you don't have one, it will be virtually impossible for you to develop celiac disease. If you do have one, you will eventually develop celiac disease only if you continue to ingest gluten. As your doctor pointed out, that's irrelevant anyway, if you're gluten-sensitive. It doesn't matter whether or not you have coeliac disease if you're gluten-sensitive -- you have to avoid it anyway.

It sounds as though you had a very good meeting, all in all (other than the prednisone prescription).

Tex

Deb · Post by **Deb** » Mon Jul 16, 2012 5:19 pm

Anne, I'm glad you had a good visit with your doctor and I hope that everything goes well. I do have a hard time understanding why doctors believe that giving up gluten is a "major step" but going on prednisone isn't. Just my opinion. Deb

Gloria · Post by **Gloria** » Mon Jul 16, 2012 8:02 pm

Deb wrote:I do have a hard time understanding why doctors believe that giving up gluten is a "major step" but going on prednisone isn't.

Gloria

fatbuster205 · Post by **fatbuster205** » Wed Jul 18, 2012 7:27 am

Consultant has confirmed that I have faecal impaction again all up the ascending colon! I have had to come home form work because the marcogol has caused severe D and I became very nauseous and threw up! And now I can't get hold of the doc until tomorrow as the surgery is closed!

Not having a great day I think it is fair to say! I am going to reduce the dosage and let things move more slowly because it is taking too much out of me! I just want to sleep!

wonderwoman · Post by **wonderwoman** » Wed Jul 18, 2012 8:37 am

Sorry to hear of your impaction. Hope you're feeling better soon.