High faecal calprotectin but no crohn's symptoms...

[Shree6]

Hi, my son has the same problem. High faecal calprotectin 1800 but absolutely no symptoms. He was diagnosed as crohn's disease but none of the medications are working. He's getting sick by these ibd medications. Has been going through a lot since August 2017. Tried all course of medication. Symptomatically he's absolutely fine. Don't know why there's high inflammation. Drs doesn't even know what to treat for as he hasn't got any symptoms. They want to start humira but as a mother I don't want my son to have the biological because of his age. Don't know what to do. He's not on any meds but doing well. Just giving him iron tablets.

[Mrsjulesflo]

Ask for more opinions, Crohns cannot have absolutely no symptoms. Why did your son take the test in the first place? I would ask at least two more doctors or have proper tests like colonoscopy, MRI.

[Shree6 in reply to Mrsjulesflo]

Hi, thanks for your reply. Initially symptoms started with diarrhoea and weight loss. So GP has recommended FC test where the results came out 600. So referred to Gastro at Royal free hospital, London. Done endoscopy and diagnosed as Crohn's disease. Started with 8 week modulen diet along with pentasa. Put on weight but still had diarrhoea. Then started sulfasalazine for which he became intolerant. And then started azathioprine where his WBC cells has come to 0..so stopped immediately. Then started prednisolone steroids. First time his stools were normal after 8 months. After 6 week treatment, diarrhoea started when he is on pentasa. On feb 19th 2018 I stopped all medication as nothing was working. In 2 days his stools were solid and his energy was back. He started going to school like a normal child. Called the dr, gave an appointment in 2 days. Reviwed his symptoms. Has done 4 endoscopies from aug 2017 and MRI last month. Endoscopy confirmed that he has got crohn's. So restarted pentasa again and next day morning vomitings and diarrhoea. So stopped it immediately. He's on 3 bottles of pediasure besides normal diet. He's got malabsorption. If doesn't drink pediasure his weight falls off. Because he plays sports I give him the drink. Doctors are not sure how to treat him....as symptomatically he's better. Just waiting for another appointment....

[FRreedman]

Why did he have a Calprotectin test done? Who diagnosed Crohn's disease? What test other than calprotectin were done, in order to decide Crohn's as a diagnosis? As there is no cure for Crohn's disease, doctors usually treat the symptoms (pain, diarrhoea, loss of weigh etc. etc.), therefore, if there are no symptoms, why is he on medication? and finally for what purpose is he on medication, bearing the aforementioned?

[Shree6 in reply to FRreedman]

Hi, thanks for your reply. Initially symptoms started with diarrhoea and weight loss. So GP has recommended FC test where the results came out 600. So referred to Gastro at Royal free hospital, London. Done endoscopy and diagnosed as Crohn's disease. Started with 8 week modulen diet along with pentasa. Put on weight but still had diarrhoea. Then started sulfasalazine for which he became intolerant. And then started azathioprine where his WBC cells has come to 0..so stopped immediately. Then started prednisolone steroids. First time his stools were normal after 8 months. After 6 week treatment, diarrhoea started when he is on pentasa. On feb 19th 2018 I stopped all medication as nothing was working. In 2 days his stools were solid and his energy was back. He started going to school like a normal child. Called the dr, gave an appointment in 2 days. Reviwed his symptoms. Has done 4 endoscopies from aug 2017 and MRI last month. Endoscopy confirmed that he has got crohn's. So restarted pentasa again and next day morning vomitings and diarrhoea. So stopped it immediately. He's on 3 bottles of pediasure besides normal diet. He's got malabsorption. If doesn't drink pediasure his weight falls off. Because he plays sports I give him the drink. Doctors are not sure how to treat him....as symptomatically he's better. Just waiting for another appointment....

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FRreedman

FRreedman

7 hours ago

Why did he have a Calprotectin test done? Who diagnosed Crohn's disease? What test other than calprotectin were done, in order to decide Crohn's as a diagnosis? As there is no cure for Crohn's disease, doctors usually treat the symptoms (pain, diarrhoea, loss of weigh etc. etc.), therefore, if there are no symptoms, why is he on medication? and finally for what purpose is he on medication, bearing the aforementioned?

[FRreedman in reply to Shree6]

In view of your reply, I would fight tooth and nail to get him referred to St Mark's at Northwick Park Hospital, which is in Narrow ( North West London), as this is a specialist hospital for diseases of the intestines and bottom (In fact it is good for bottoms) and is a centre for excellence. The whole of St Mark's is dedicated to diseases of the bottom, and every consultant there specializes in a little part of the intestines and bottom. I would ask your GP for a referral letter. Good luck.

[Shree6 in reply to FRreedman]

Hi FRreedman,

I am really very glad that I seeked for some help in here. Can't say more. This is exactly what I have been looking for...a second opinion and didn't knew who to approach. Thanks a million. I will definitely go to my GP.

[Oliver01]

My daughter was diagnosed with crohns 2 years ago. We have done food tests and has a wheat intolerance. so we changed her diet strictly no wheat/gluten and dairy. she is on only supplements (Vit D drops are aplus) and is doing great. We definitely said NO to meds at her age.

[Shree6 in reply to Oliver01]

That is really good news. I strongly feel that every crohn's patient is different. They react differently to different treatments. I have been trying to convince the doctors that these medications are not working for my child. What I found was not all iron tablets are tolerated by my son's body except ferrous gluconate. Because this doesn't have sulphur. I told the drs is it to do something with sulphur as crohn's meds like sulfasalazine and pentasa contain sulphur???? I really don't get any help from them. No MRI results and no updates yet....they just follow a protocol. I can't leave my son with high inflammation like that. Its been 3 yrs now. I know he doesn't have symptoms as I control the food and give him paediasure. Excluded wheat completely. He's doing good. But what to do with inflammation????

[Oliver01]

takes time. could take 2 years to heal. we have a functional doctor who gets to the root cause and treats. loads of good gut supplements. and make sure vitamin (vit d and iron ...)labs checks. . she had extremely low iron and d. we are good now. her only symptom is constipation. she had other issues that lead us to inflammation... she recently messed up on her diet and her fecal calprotein was over 2000. we had MRI and showed much improvement than then last MRI a year ago. Functional dr said when totally gluten free and eat it. it will create a huge response... but MRI showed she is healing.