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 May she had 2-3 weeks of diarrhea, by the time we could get into GI she was better so we canceled. Fast forward to August she had another week of diarrhea (mild). I was concerned given previous episode, but thought maybe it was nerves of starting school as she is an anxious child. Then October she has another week of diarrhea so we then head into GI. Prior to flares, only symptoms I can think of is paleness and dark eye circles for 2-3 years prior. We were treating with sublingual allergy drops because she has tons of environmental allergies year-round so we attributed her palor to that. She has been consistent on height curve since birth, very slow decline on weight over last few years.
First GI does Celiac blood panel. Comes back positive a few days before scheduled colonoscopy/endoscopy. Thinking we are going in confirming a Celiac diagnosis and he comes out saying it is IBD and he thinks the Celiac blood panel was a false positive. This never made sense to me, her Celiac numbers were high and she had villi atrophy. He says it is Crohn's. I push back and say I want to at least try the GF diet with meds and am up front that we will seek a 2nd option. He wanted steroid/Lialda/partial enteral nutrition. I pushed back on steroid as she was no longer flaring and new on the journey of understanding the importance of getting the inflammation in check quickly. I agree to Lialda and shakes and he appeases me with GF diet. Meanwhile he is clear we will have to jump ship quickly if anything pops up in small bowel with MRE.
Second GI I call daily and get in quickly prior to MRE. She says 100% she has Celiac with numbers as high as hers were. She says it is Indeterminate Colits (patchy like Crohn's and UC like inflammation). She says she suspects the MRE will be clear and that ends up being the case a couple weeks later.
At diagnosis her CRP was normal, slightly elevated Sed-Rate and fecal of 178. 2 months out on Lialda and GF diet her fecal was 68 (normal). 5 months out her fecal is 19! Meanwhile her coloring is normal, she's gained 9lbs and is back on the weigh percentile sh was at, and grown 3". In 5 months she has grown and gained that much. She went from 75% in height to almost 80% so higher than ever too.
Things have obviously been going well. The Celiac has been the bigger life change since the IBD has been a non-issue since diagnosis (she was out of flare prior to scopes). It bothered me the GI's didn't agree and for peace of mind I had to torture myself and seek out a 3rd opinion. We went to the Chief of Peds at another hospital and this is where things went crazy...
He said flat out the 1st was wrong, she is textbook Celiac in terms of her endoscopy results. I said Crohn's can cause villi atrophy too. He said yes, but her bloodwork is also clear. He then went on to say what you all have said that there is no way she has Crohn's and is doing this well on Mesalamine. He said her 2nd GI was closer calling it Indeterminate Colitis and Celiac. The difference in his opinion is that the root cause of the colon inflammation is the Celiac and not IBD. He recommended weaning to 1 Lialda for 1 month. We will do fecal then. Then we will do another fecal 1 month out after discontinuing Lialda. If the inflammation returns then we know it is Indeterminate Colitis, but he strongly suspects it is not. He made a comment that reminded me of Occam's Razor, basically the simplest explanation is often correct and all her symptoms can be explained from the Celiac only.
I am trying not to get my hopes up, but it would be incredibly irresponsible to suggest this if he didn't feel strongly. I was hoping to come out of that visit with 1 less diagnosis but I didn't dream it could be the IBD. We shall see, for once I wish I could fast forward time to see how this plays out.
Here is a recap: Last May she had 2-3 weeks of diarrhea, by the time we could get into GI she was better so we canceled. Fast forward to August she had another week of diarrhea (mild). I was concerned given previous episode, but thought maybe it was nerves of starting school as she is an anxious child. Then October she has another week of diarrhea so we then head into GI. Prior to flares, only symptoms I can think of is paleness and dark eye circles for 2-3 years prior. We were treating with sublingual allergy drops because she has tons of environmental allergies year-round so we attributed her palor to that. She has been consistent on height curve since birth, very slow decline on weight over last few years.
First GI does Celiac blood panel. Comes back positive a few days before scheduled colonoscopy/endoscopy. Thinking we are going in confirming a Celiac diagnosis and he comes out saying it is IBD and he thinks the Celiac blood panel was a false positive. This never made sense to me, her Celiac numbers were high and she had villi atrophy. He says it is Crohn's. I push back and say I want to at least try the GF diet with meds and am up front that we will seek a 2nd option. He wanted steroid/Lialda/partial enteral nutrition. I pushed back on steroid as she was no longer flaring and new on the journey of understanding the importance of getting the inflammation in check quickly. I agree to Lialda and shakes and he appeases me with GF diet. Meanwhile he is clear we will have to jump ship quickly if anything pops up in small bowel with MRE.
Second GI I call daily and get in quickly prior to MRE. She says 100% she has Celiac with numbers as high as hers were. She says it is Indeterminate Colits (patchy like Crohn's and UC like inflammation). She says she suspects the MRE will be clear and that ends up being the case a couple weeks later.
At diagnosis her CRP was normal, slightly elevated Sed-Rate and fecal of 178. 2 months out on Lialda and GF diet her fecal was 68 (normal). 5 months out her fecal is 19! Meanwhile her coloring is normal, she's gained 9lbs and is back on the weigh percentile sh was at, and grown 3". In 5 months she has grown and gained that much. She went from 75% in height to almost 80% so higher than ever too.
Things have obviously been going well. The Celiac has been the bigger life change since the IBD has been a non-issue since diagnosis (she was out of flare prior to scopes). It bothered me the GI's didn't agree and for peace of mind I had to torture myself and seek out a 3rd opinion. We went to the Chief of Peds at another hospital and this is where things went crazy...
He said flat out the 1st was wrong, she is textbook Celiac in terms of her endoscopy results. I said Crohn's can cause villi atrophy too. He said yes, but her bloodwork is also clear. He then went on to say what you all have said that there is no way she has Crohn's and is doing this well on Mesalamine. He said her 2nd GI was closer calling it Indeterminate Colitis and Celiac. The difference in his opinion is that the root cause of the colon inflammation is the Celiac and not IBD. He recommended weaning to 1 Lialda for 1 month. We will do fecal then. Then we will do another fecal 1 month out after discontinuing Lialda. If the inflammation returns then we know it is Indeterminate Colitis, but he strongly suspects it is not. He made a comment that reminded me of Occam's Razor, basically the simplest explanation is often correct and all her symptoms can be explained from the Celiac only.
I am trying not to get my hopes up, but it would be incredibly irresponsible to suggest this if he didn't feel strongly. I was hoping to come out of that visit with 1 less diagnosis but I didn't dream it could be the IBD. We shall see, for once I wish I could fast forward time to see how this plays out.
