• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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  1. C

    Crazy turn of events for us!

    They had, I am sure I had many posts back in the day. Basically Celiac bloodwork was off the charts and had textbook villi atrophy in endoscopy, yet her first GI said it was a false positive which really doesn't happen. She had some patchy surface colon inflammation also so he said it was IBD...
  2. C

    Crazy turn of events for us!

    Hi all! I haven't checked in in a very long time, but I thought of this group as we just got a fecal calprotectin back that was <16. It's been 4 years since I last posted and she has been on no meds. It was just Celiac! We checked FCP monthly for about 6 months and then stretched it out, we have...
  3. C

    Diet experience for kids with Crohns

    I am in a group called SCD Families on FB. I was researching the SCD diet, but ended up with a diagnosis change so haven't personally done it. The admin works on NIMBAL adivsory board with Dr. Suskind and founded Gut Harmony. The amount of knowledge on all things diet both SCD and beyond is...
  4. C

    Still worried 😟

    This sounds a bit like my daughter was, she would have cramping/diarrhea for a few days and then go a couple months with no symptoms. We had a GI appointment scheduled once and canceled for the same reason. Once she had her 3rd incident we finally sought out a GI for testing. She has Celiac...
  5. C

    Fecal calprotectin and colds

    I thought I had read somewhere that FCP can be effected by colds. We are overdue for one so I am eager to do it as soon as possible. She started with a sore throat last Wednesday, headache and low grade fever Thursday that lasted a day, and now just remaining congestion and nasal drainage. How...
  6. C

    Crazy turn of events for us!

    I am reeling everyone and very cautiously optimistic, but we sought out a 3rd opinion yesterday despite the fact that my daughter is doing very well. It never sat right with me that her first 2 GI's differed so much and for my peace of mind I needed to have a 3rd weigh in. Here is a recap: Last...
  7. C

    Sun sensitivity/rash?

    My daughter was diagnosed 5 months ago in the Fall, we live in NC so we get our share of sun but she’s certainly not outside for long periods of time during the school year. We went to Florida on vacation this past November and her face developed a rash and she had dry, scaly eyelids. Fast...
  8. C

    Happy News!

    I like to come back and post as I think it is helpful for new people to the site. I know anything can change at any moment, but celebrating the good when I can. Refresher is that 11yo was diagnosed with Indeterminate Colitis/Celiac this past October. At diagnosis her Fecal Calpro was 178, in...
  9. C

    What is this in the stool?

    Yesterday my daughter alerted me to her stool looking funny. It was the desired color and consistency, however there was white solid looking piece or possibly 2 pieces in it. Could this be mucus? It really was almost solid and not jelly-like or stringy as mucus has been in the past and also...
  10. C

    "Never think about Crohn's"

    I have been reading a variation of that sentiment fairly often when people are reassuring others about starting Biologics, etc. It's been nagging at me because I think about Crohn's every single day and I need reassurance please. My daughter was diagnosed in October and was prescribed Lialda...
  11. C

    Quick Help Please - stool test

    I am collecting the sample for a fecal protectin today and can't take to the lab until tomorrow. Her Doctor said to freeze and the lab notes say to only refrigerate if it will be longer than 24 hours. Does it matter? I don't want to goof this up.
  12. C

    First signs of flare-up?

    Hi all, my daughter has been on Lialda for a couple days shy of a month for her colitis. Until yesterday the only symptom she has experienced since starting treatment has been a couple of mouth ulcers. Last night she had what I think was a Bristol 6 stool. She is fine this morning but I am...
  13. C

    10yo diagnosed with IBD/Celiac?

    Hello all, My 10yo daughter has been just diagnosed with IBD and I am hoping we will get to a definitive diagnosis this week. It's been a real roller coaster over the last week and I am so thankful for this forum. I have been researching and reading non-stop. My daughter has had 3 rounds of...
  14. C

    Trying to get final IBD diagnosis for child?

    Hello all, My 10yo daughter has been just diagnosed with IBD and i am hoping we will get to a definitive diagnosis this week. It's been a real roller coaster over the last week and I am so thankful for this forum. I have been researching and reading non-stop. My daughter has had 3 rounds of...
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