Do you think she may have Lymphocytic Colitis??

[Niks]

Jaime's GI has suggested that she weans off her Pred, as is convinced she only has coeliacs. She has been ridgedly on a gluten free diet since 18th December. We have been making all food from scratch and very careful with snacks etc. She is now down to 15mg and now has severe abdo pain, nausea, and has vomited 3 times today. She feels achy and generally unwell.

She has left a message with the IBD nurse, who I know will get back to us tomorrow. Have researched and it seems that there is a higher risk of Lymphocytic Colitis with coeliacs..

She has had every test seemingly possible except the pillcam?

Any thoughts or ideas would be very helpful!

Thank you

Niks

 

[Ihurt]

I would say that she definitely needs to be on the gluten free diet for over 5 months to actally see if it is going to work. But that being said, that does not explain the way she is feeling now. I mean I kind of think there is something esle going on here. Has she been diagnosed with crohns?? I mean with celiacs, the treatment is eating gluten free, and that should minimize her symtpoms should this all be celiacs. It does take a few months for the intestines to heal once starting a gluten free diet though. But she should not be feeling worse. Did they actually do a biopsy and diagnose her with celiacs? I am sorry she is not doing well. I also wonder if she is experiencing a slow gut( like gastroparesis). Has she ever had a gastric emptying scan done??

Jaime's GI has suggested that she weans off her Pred, as is convinced she only has coeliacs. She has been ridgedly on a gluten free diet since 18th December. We have been making all food from scratch and very careful with snacks etc. She is now down to 15mg and now has severe abdo pain, nausea, and has vomited 3 times today. She feels achy and generally unwell.

She has left a message with the IBD nurse, who I know will get back to us tomorrow. Have researched and it seems that there is a higher risk of Lymphocytic Colitis with coeliacs..

She has had every test seemingly possible except the pillcam?

Any thoughts or ideas would be very helpful!

Thank you

Niks

 

[Niks]

Her bloods came back negative for coeliacs, but she had biopsies done that showed 'characteristics of coeliacs'. He was 'confident' that a coeliacs diagnosis was correct!!

She had a barium meal test early December, which got stuck in her stomach and didn't go anywhere, she ended up vomiting and what was left solidified in her stomach. She was in a right state and ended up back in A & E.

But no she hasn't had the stomach emptying test! What does this involve?

 

[Niks]

She has so far been diagnosed with Proctitis, then Colitis, then Crohn's and now Celiacs!

Although he cannot rule out Crohn's! What does that even mean :/

 

[Ihurt]

Well the gastric emptying scan is a test where they look to see if the food is being properly moved from the stomach into the small intestines. For the test they will have her eat a small meal, usally eggs or oatmeal that is laced with a radioactive dye( it has no taste). then she will go under an xray machine and they will watch to see how long it takes the food to leave the stomach. Someone with gastroparesis, well the food will sit in the gut and there will be little movement. That is how they diagnose gastropareisis. The symptoms of gastroparesis are feeling Very full after only eating a small amount, bloating, nausea, and vomiting and stomach pain. Symptoms can vary with each individual.

Usually with crohns they do a colonoscopy and a biopsy to diagnose it. Did she have positive biopsies that indicated crohns?

It seems like she definitely has a motility issue of the gut. If in deed she has gastroparesis, the meds they use to treat it are reglan( that is used here in the United States.), and also there is a med called domperidone( this is popular in Europe.). I have had motility issues in my upper gut before and took domperidone. It is much safer and a less side effects than reglan. I had to order mine from New Zeland though as it is not FDA approved here in the US. If you are from Europe, you can likely get it over there.

Also when she eats, does she eat easy to digest foods? I know when I was having a bad time, I ate like baby food. I mean I put stuff like vegis( well cooked) through a blender and did ok. I also ate very small amounts at a time. I mean eating a bunch of small meals throghout the day was easier to handle. I did ok with mashed potatoes, pureed vegis, easy to digest meats like chicken ( roasted) and turkey, fish etc... But it has to be mushed or at least chewed very very well. I am not kidding, I use to chew my meats until they were liquified in my mouth. It is just easier to digest then.

I am so sorry she is sick. I have a feeling the doctors have NO clue what is wrong with your daughter, or at least is sounds that way. It is like they are just throwing a bunch of names on everything.

I would ask for the gastric emptying scan to see if she is digesting her food. I mean when she vomits, is it hours after she has eaten or right afterwards??

 

[Niks]

Hello Ihurt! Thank you for your reply! She had negatve results for crohn's. But initially inflamation in her bowel.

I think the gastro emptying scan maybe the next step! Hopefully will get hold of nurse today. She feels sick as soon as she's eaten. Thanks for the tips with food, when at her worse she has been better on pureed food!!

Wondering if she needs food alergy testing and possibly a pillcam? It is all so frustrating. Her IBD nurse thinks it's a bug or some gluten that she has eaten :/

 

[Niks]

Hello Ihurt! Thank you for your reply! She had negatve results for crohn's. But initially inflamation in her bowel.

I think the gastro emptying scan maybe the next step! Hopefully will get hold of nurse today. She feels sick as soon as she's eaten. Thanks for the tips with food, when at her worse she has been better on pureed food!!

Wondering if she needs food alergy testing and possibly a pillcam? It is all so frustrating. Her IBD nurse thinks it's a bug or some gluten that she has eaten :/

 

[Aussie]

Hi Niks, would add she should also get blood test for HLA-DQ2 and HLA-DQ8, which if negative, could close the door on the coeliac diagnosis which sounds a little sketchy.

Also, if the symptoms got worse as the steroids are being weaned, steroid withdrawal might be another possible explanation (especially if the faecal calprotectin is normal), although would agree with Ihurt re gastric emptying scan.

Best wishes.