Coeliac disease with Crohn's.

[polly13]

Hi there everybody, some of you may remember Lucy's story, she was diagnosed with Crohn's disease when she was two and was quite ill for a number of years until she went into remission with Humira and Methotrexate. She has been on Humira now for just over three years and had been doing really well until recently.... also GI took her off methotrexate last September as she was doing so well.

She started complaining of very minor tummy pain in April ( I wasnt sure if she was trying to get off school or whether she actually had some belly pain ) however shortly afterwards I also noticed that she was pooing more frequently - maybe up to 6/7 times per day, no pain or blood associated with pooing.

We had our GI appointment in April, told him about the belly pain and the pooping, so he ordered a calprotectin test, which came back slightly elevated, he then performed a colonoscopy which had only very slight abnormalities, and perinanal (where Crohn's was most prevalent previously) was clear. He reintroduced methotrexate (which is not agreeing with her but thats another story) and is now pondering as to whether she has coeliac disease on top of the Crohn's. We had the bloods for Coeliac done yesterday so I am avaiting results. Anybody else diagnosed with Coeliac as well as Crohn's, also does anybody have any tips to easing the side effects of MEthotrexate - i.e vominting (on an anti-emetic which is helping), Flu like symptons, sore mouth etc.

thanks for reading.

Polly

 

[my little penguin]

Has she ever had an upper scope ?
Ds has both every single time
As far as Mtx
Is she taking folic acid or folate ?
We found for ds when the doc increased the FOLATE to 1mg x2 day the side effects of Mtx pretty much went away
He also switched from injections ( horrid side effects ) to pills
Good luck

 

[Maya142]

For MTX, we have several tips! We tried absolutely everything to keep my daughter on it. The things that helped were:
1) Switching from pills to injections

2) Zofran ODT (the disintegrating kind)

3) Other nausea meds - we tried Kytril (Granisetron) which is similar to Zofran but worked better. Insurance did not like covering it because it was expensive but it worked for my daughter.

4) Increasing her folic acid dose

5)Leucovorin -- this is folinic acid and for whatever reason, seems to be used more by rheumatologists and less by GIs (I have no idea why). It's a "rescue" drug that is actually given to cancer patients when they get very high doses of MTX. We used a smaller dose 24 hours after the shot, and it worked really well

6) When all else failed, decreasing the MTX dose (we went from 25 mg to 15 mg to 7.5 mg!)

I don't know much about Celiac, but an upper endoscopy would give you answers.

Good luck!! I hope she can tolerate the MTX. My daughter can't and we put her on Imuran instead and that has worked well for her.

 

[kimmidwife]

I think Mehita's son has both. I will try and tag her.

 

[Mehita]

Yes, my son was dx'd with both Celiac and Crohn's. I don't think there is much you can do until you get the Celiac results back. They may do an upper endoscopy to check the villi in the small intestine. If they are blunted, that's the gold standard for diagnosing Celiac. You may want to do a food diary for a bit as well. See if there is a correlation between her not feeling well and consuming gluten.

Could she be building antibodies to Humira? Have you had her levels checked with that? Or has she grown enough that a different dose is needed?

I hope you get answers soon.

 

[CarolinAlaska]

My daughter is gluten intolerant but doesn't have celiac. It causes problems nonetheless. I hope they can get your daughter back on track quickly.

 

[polly13]

thanks for all the replies, she takes the methotrexate orally and he has slightly reduced the dose and we are playing with timing of the taking the folic acid and so far so good, she didnt vomit with it this weekend and didnt complain about feeling ill. I am giving her the zofran 3 hours before and again the following morning, so fingers crossed all going well.

We are still waiting for the Coeliac blood results - I think they will be back tommorow, we live quite a distance from the Childrens hospitals, so My gp does her bloodwork but it takes a little longer for the results to comeback.

We are waiting on an MRE scan I imagine a decision will be made about the upper endoscopy when the blood work comes back, she had upper endoscopy about 3 years ago so she is probably due one anyway.
GI also mentioned checking Humira levels as he is slightly worried that she has outgrown her dose and also spoke about potentially increasing it to weekly, so I guess it is wait and see until all the pieces of the puzzle come together, but I feel the GI team are on top of things.

Meanwhile, re-introducing the methotrexate seems to have helped her sysmptoms slightly so we are repeating the calprotectin in a month or so and Im sure we will know more then, but given her improvement since the reintroduction of the methotrexate Im feeling optimistic,

just had a thought that maybe its the methotrexate and not the humira thats doing the work.

Thanks again
Polly

 

[my little penguin]

The Mtx tends to make the humira more effective
So the Mtx is not the heavy hitter but gives humira enough of a boost that it can do wonderful things again
At least that was what we were told

So glad your Gi team is on top of things

 

[Maya142]

You could try the MTX injection and see if she does better with it. Some kids do better with the injections and others do better with the pills. It's a shot with a tiny needle and my girls say it barely hurt at all (nothing like Humira).

We were also told the same thing about MTX -- it gives Humira a "boost" and makes it work better. Humira by itself actually did not work well for my younger daughter, but once we added MTX and made the shot weekly, the combination was like magic!!

 

[polly13]

Thanks our GI says exactly the same about the methotrexate, I will mention the injection and see what they think, I know initially they didn't want to put her through the trauma of two injections but she is older now and I think she could handle it ok

 

[silec]

Hi there everybody, some of you may remember Lucy's story, she was diagnosed with Crohn's disease when she was two and was quite ill for a number of years until she went into remission with Humira and Methotrexate. She has been on Humira now for just over three years and had been doing really well until recently.... also GI took her off methotrexate last September as she was doing so well.

She started complaining of very minor tummy pain in April ( I wasnt sure if she was trying to get off school or whether she actually had some belly pain ) however shortly afterwards I also noticed that she was pooing more frequently - maybe up to 6/7 times per day, no pain or blood associated with pooing.

We had our GI appointment in April, told him about the belly pain and the pooping, so he ordered a calprotectin test, which came back slightly elevated, he then performed a colonoscopy which had only very slight abnormalities, and perinanal (where Crohn's was most prevalent previously) was clear. He reintroduced methotrexate (which is not agreeing with her but thats another story) and is now pondering as to whether she has coeliac disease on top of the Crohn's. We had the bloods for Coeliac done yesterday so I am avaiting results. Anybody else diagnosed with Coeliac as well as Crohn's, also does anybody have any tips to easing the side effects of MEthotrexate - i.e vominting (on an anti-emetic which is helping), Flu like symptons, sore mouth etc.

thanks for reading.

Polly

's

Hi Polly
maybe I can return the favour here. My knowledge of crohns is thus far very limited but I am a diagnosed coeliac since 1996. What jumped out at me was your mention of Lucy's sore mouth due to her crohns meds. Mouth ulcers in the mouth and throat is a Coeliac symptom as well as very severe gingivitis. At any given time there could be 3 or more mouth ulcers. Sore tongue was another symptom for me also.

silec

 

[polly13]

Thank you Silec - my DH is picking up the blood results in relation to the coeliac so hopefully we will know more later on. hope things are ok with you and your boys. I will update when I get the bloods and get to talk to the GI.

 

[FrozenGirl]

Agree with the folic acid suggestion. I used to get horrible nausea from mtx. I am now on it again with folic acid this time and have no nausea. I was taking 1mg/day however with my dose being increased from 10mg/week to 15mg/ week I am going to 5mg/ day of folic acid to prevent the nausea from coming back.

 

[polly13]

Good news bloods for coeliac came back ok, so we wait for the MRE to see whats causing the flare. She has had loads of blood in her poos the last couple of days, so Im starting to get a little concerned, its all very strange, her calprotecton was only marginally raised, her CRP and ESR are normal, and scope was relatively normal also - findings were minimally invasive colitis so nothing major going on there. Apart from the calprotecton and the blood she is absolutely fine, she has loads of energy, she looks great and is in great form (she is at pony camp this week and is absolutely loving every minute of it and getting fully stuck in to all the activities), she had a sports camp last week and same thing no complaining of being tired. She is not in any pain that she is telling us about.... but I guess thats Crohns for you..
Thanks for all the tips on the methotrexate, she is definately coping better, we are giving the folic acid the day before, the anti-emetic 3 hours before and again the following morning so since we started that there have been no episodes of vomiting.

P

 

[my little penguin]

Folic acid at least for Ds is every single day
Not just once a week

 

[Farmwife]

We did folic acid everyday as well. We were told to do it that way.

What was her FC count?

 

[CarolinAlaska]

I'm so glad to see that she is active and not slowing down. Hopefully the bleeding will just go away...

 

[Sascot]

Glad she is enjoying all the activities. Hope you get an answer soon