Changed diagnosis yet again!

[Niks]

More confused than ever!!!!

Jaime (my 18 year old daughter) and I have just got back home from her GI appointment. She has been diagnosed with first proctitis, then colitis, then crohns and now celiacs!!!

Does anyone know if she does have celiacs, (we really hope so as this is a much better diagnosis!) if that would cause bleeding from the colon, severe abdo pain, obstructions, vomiting (to the point where she couldn't even hold down water, constipation and diarrhea.

I really want to believe this and her GI has told her to wean off the pred. She is at the moment feeling better than she has for about 4 months!!

Before all of the diagnosis' she did try a gluten and dairy free diet as we thought there maybe some intolerence, but it didn't seem to make any difference!

Her GI has come to this conclusion with negative blood tests but postive biopsies.

I am so confused, the last time she weaned off pred she was so poorly and back in hospital for a week! Anyone else had similar experiences??

Thank you

Niks

 

[SarahBear]

I'm sorry you all have had such a tough time pinning down a diagnosis!

I don't think Celiac's causes bleeding, and I really don't think it should cause an obstruction.

Did they actually say she does not have Crohn's? It's possible to have Crohn's and Celiac's. How long did she try the gluten free diet before? Sometimes, it can take quite a while to feel the affects.

 

[Niks]

Hi Sarah

She had inflammation in her large bowel, and with all her other symptoms were going with Crohn's, but now that she has a positive Celiac's results he has now said there are no signs of Crohn's!

I asked about the bleeding and the obstruction and mentioned that we had tried gluten and dairy free and he shrugged it off. (She did only try it for 2 maybe 3 weeks)

Obviously we will try doing the gluten free and wean off the pred, I am just worried that she will end up being really poorly again.

 

[SarahBear]

Have you considered getting a second opinion? This really doesn't make much sense.

Is she taking anything other than pred? Maybe she just developed Celiac's and her Crohn's has gone into remission. How was she diagnosed with Crohn's? Were there positive biopsies and blood tests for it?

 

[Niks]

She had imflamation in her large bowel and her symptoms were so severe they sent her off with Pred and a Crohn's diagnosis. She also has 20mg pred foam. Also salofalk 1g. omeprazole 20mg, calceos and several laxatives.

Has been told to stop all except Pred, and wean them down by one 5 daily. All her bloods and other biopsies have come back negative!

 

[SarahBear]

Maybe it is Celiac's, then. It can cause inflammation. But that still doesn't explain the bleeding or obstruction.

Hopefully someone else will have more insight. Sorry, I'm out of ideas. I would suggest getting a second opinion, though.