Crohn's Disease Forum » Parents of Kids with IBD » 10yo diagnosed with IBD/Celiac?


 
10-26-2017, 09:22 PM   #31
my little penguin
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Good luck with the plan !!!
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11-06-2017, 10:32 AM   #32
Carolina*
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Hey all! Well itís been almost a month and sheís still feeling good (knock on wood). I do want to start understanding and preparing myself for her blood work in December. I know with the celiac piece her numbers were so high and <100 is the highest level so it may have gone down but we may not know right away. As for the IBD, what will they be looking at to determine if the Lialda is working? Sed Rate, Westergren/WBC/calprotectin? Those were her only values that were off that I recall. I know I canít trust the lack of symptoms since she would go a few months in between before diagnosis.
11-06-2017, 12:55 PM   #33
Maya142
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CRP is also used - that is a blood test, similar to Sed rate (ESR). Fecal Calprotectin is generally pretty accurate, so that will give you some good info, like you said. Has it ever been tested before?

Glad she is feeling good!
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Mom of S (23)
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11-06-2017, 12:59 PM   #34
Carolina*
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CRP is also used - that is a blood test, similar to Sed rate (ESR). Fecal Calprotectin is generally pretty accurate, so that will give you some good info, like you said. Has it ever been tested before?

Glad she is feeling good!
Thank you! Yes, she was tested about a month ago for the Fecal Calprotectin and everything else it seemed, lots of tests. Her CRP was 0.99 just inside of normal of 1.0. I remember that one off the top of my head.
12-03-2017, 01:16 PM   #35
Mehita
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How are things going, Carolina*? Sorry for not responding sooner. I'm not getting the tags and haven't been checking in much lately. My son was dx'd with both Celiac and Crohn's nine years go. Please feel free to ask questions!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
12-03-2017, 03:20 PM   #36
Carolina*
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How are things going, Carolina*? Sorry for not responding sooner. I'm not getting the tags and haven't been checking in much lately. My son was dx'd with both Celiac and Crohn's nine years go. Please feel free to ask questions!

Thanks Mehita for checking in, I appreciate your willingness to help. It's been 7 weeks since she was diagnosed and she's doing well still. She's taking Lialda alongside a GF diet and 3 nutrition shakes a day. She's gained 5 pounds too which put her on the very bottom of 'normal' on the BMI chart. It's definitely a bit tricky managing the Crohn's Colitis/Celiac and knowing which is the culprit with such similar symptoms. We go back to the Doctor for the first time since diagnosis in 2 weeks and I am eager to see what the calprotectin test shows. They are not retesting the Celiac, not sure how often that should be done. Did your Doctor ever question the Celiac diagnosis? Our first GI thought it was a false positive from IBD, but the second firmly believed it with her values being so high even though it is a rare combo. I still wonder if she has Crohn's Colitis or UC. She is patchy like Crohn's but seemingly doing well on the Lialda so far at least outwardly.

Last edited by Carolina*; 12-03-2017 at 03:39 PM.
12-03-2017, 05:02 PM   #37
Mehita
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We run Celiac panels once a year or during times when we weren't sure if it was Crohn's or Celiac causing the issue. My son was vomiting daily for awhile and we kept chalking it up to gluten only to find out he had a stricture. It can be really tricky because you have to rule one or the other out, so my best advice is to be sure you're 100% certified or naturally gluten free, just to take Celiac out of the equation for when she's not feeling well. That being said, be sure to check lip gloss, toothpaste, mouth wash, medications (www.glutenfreedrugs.com) and always, always read labels. I ran across salsa that had wheat in it. Why the heck salsa needs wheat is beyond me *smh*.

Our third GI did initially question the Celiac dx when we first saw him, but he's since done his own scopes and biopsies and now believes it. DS was initially diagnosed with a 72, followed by scopes, and he always vomits almost immediately when accidentally ingesting gluten, so... pretty obvious.

Good luck at the appointment!
12-04-2017, 06:57 PM   #38
crohnsinct
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Sorry I am late to the party. You have been given great advice and insight.

I just wanted to pop on to say that IBD is IBD. Whether it is UC or Crohns really only comes into play if and when there are colonic surgery decisions to make.

I have known people with mild CRohn's confined to their colon who have responded well to 5 ASA's (although not the norm) and I have known very severe UC patients who have needed Remicade, 5 ASA's and Methotrexate.

Bottom line, you are treated the individual not the name of the disease.

Good Luck at your appointment. I hope the FCP came down nicely.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-04-2017, 07:13 PM   #39
Carolina*
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Sorry I am late to the party. You have been given great advice and insight.

I just wanted to pop on to say that IBD is IBD. Whether it is UC or Crohns really only comes into play if and when there are colonic surgery decisions to make.

I have known people with mild CRohn's confined to their colon who have responded well to 5 ASA's (although not the norm) and I have known very severe UC patients who have needed Remicade, 5 ASA's and Methotrexate.

Bottom line, you are treated the individual not the name of the disease.

Good Luck at your appointment. I hope the FCP came down nicely.
Yes, Iíve read that is when the diagnosis would be necessary but it is good to hear again. My need for the name is for peace of mind that we are treating at the appropriate level. I trust her Doctor but still comforting to read there are Crohnís cases confined to colon as hers is that do respond to the 5-ASA drugs. I know it is not the norm and that leaves a little paranoia in the back of my head.
12-18-2017, 04:42 PM   #40
Carolina*
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Hi all! Getting nervous about her follow-up appointment tomorrow after being diagnosed at the end of October. Her fecal calprotectin test just loaded on her chart, it was 178 in October and is down to 68. It seems the Lialda is working on her Crohnís Colitis, I think? Sheís had mouth ulcers and the very occasional cramp but no diarrhea. She felt dizzy and had cramps on Friday but we learned she was accidentally glutened so not sure what to attribute that to. How quickly do they want to see the labs normalized to determine a treatment plan is working?
12-18-2017, 11:53 PM   #41
crohnsinct
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Where is her Crohns located? 178 is just outside of normal at most labs BUT our GI feels that with small bowel disease north of 100 and you consider changing something about therapy plan. Either way that kind of drop is great! Seems something is working! Incidentally, I have read that Celiac "could" raise FCP...not a general rule but could. So maybe treating both brought her numbers down nicely.

So sorry about the accidental gluten. It could be so hard. Like Mehita said it could be hidden in the craziest of places. I have a friend who has a daughter who reacts if unused utensils are placed back into the drawer and there was gluten served the night prior.
12-19-2017, 01:11 AM   #42
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It sounds like you're definitely going in the right direction!! How long has she been on Lialda? Generally, they want labs to be normal as soon as possible - but each med takes a different amount of time to kick in. So for Imuran, it takes 3 months or so to kick in, so you would want normal labs by the 3 month mark or at least soon after.

If they aren't normal, then you make a change - whether it is upping the dose or adding a different med to it or switching meds altogether.

With Pentasa, which is another 5-ASA, I have heard it is 30 days. I would assume the same is for Lialda.

Poor kiddo, I'm sorry to hear she got glutened! Gluten really is in the weirdest things sometimes - shampoo, lip balm...I bet it's a really tough diagnosis to adjust to and even once you're adjusted, I'm sure there are slip-ups.
12-19-2017, 05:55 AM   #43
Carolina*
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Where is her Crohns located? 178 is just outside of normal at most labs BUT our GI feels that with small bowel disease north of 100 and you consider changing something about therapy plan. Either way that kind of drop is great! Seems something is working! Incidentally, I have read that Celiac "could" raise FCP...not a general rule but could. So maybe treating both brought her numbers down nicely.

So sorry about the accidental gluten. It could be so hard. Like Mehita said it could be hidden in the craziest of places. I have a friend who has a daughter who reacts if unused utensils are placed back into the drawer and there was gluten served the night prior.
Our lab range is 0-120 with 0-50 being normal. Her 178 was end of October so itís been just shy of 2 months on Lialda. She has patchy disease in her colon only. I was reading today pediatric celiac patients can have higher normal Fecal Calprotectin values. Itís all confusing with both diseases to know what is what.
12-19-2017, 06:00 AM   #44
Carolina*
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It sounds like you're definitely going in the right direction!! How long has she been on Lialda? Generally, they want labs to be normal as soon as possible - but each med takes a different amount of time to kick in. So for Imuran, it takes 3 months or so to kick in, so you would want normal labs by the 3 month mark or at least soon after.

If they aren't normal, then you make a change - whether it is upping the dose or adding a different med to it or switching meds altogether.

With Pentasa, which is another 5-ASA, I have heard it is 30 days. I would assume the same is for Lialda.

Poor kiddo, I'm sorry to hear she got glutened! Gluten really is in the weirdest things sometimes - shampoo, lip balm...I bet it's a really tough diagnosis to adjust to and even once you're adjusted, I'm sure there are slip-ups.
Sheís been on Lialda since end of October, I remember them saying weíll know in 30 days whether we need to make medication changes. We got a 2nd opinion 3 weeks later and switched Doctors so our followup is from that appointment today making it just shy of 2 months on the drug.
12-19-2017, 06:49 PM   #45
Carolina*
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Her Doctor was pleased with the FCP drop from 178 to 68 and we are sticking with the Lialda. I was surprised she hadnít gained weight but she was in the Nutcracker all last week and off her routine so I think she may have lost a pound or 2. She did grow an inch in the last 7 weeks which surprised me. Luckily she hasnít had growth issues yet, still holding steady around the 75% in height. Itís just her weight Iíd love to see her solidly above the BMI 5% and she teeters just below.

I wanted to update for new people that come to the site. I know it was so overwhelming when I joined to see all the failed treatment plans. I know the Lialda may not work forever, but Iím grateful it is for now. My experience doesnít seem to be typical so wanted to share our story too in case it helps others that are diagnosed quickly and start off with a ďmilderĒ case. The 5-ASA isnít supposed to work for Crohnís but it is working for her indeterminate Colitis favoring Crohnís.
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