02-17-2013, 07:16 PM   #1
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I've been lurking for a few weeks but figured I may as well introduce myself. I have a daughter that recently turned 8 and has been suffering from GI issues since birth. As a newborn she had constipation issues which quickly turned to diarrhea issues. She was labeled FTT within a few months. We were finally referred to a GI in Tampa when she was about 4. She had some labs done which were mostly normal (eosinophils were very high and albumin was low) and then her first EGD/colonoscopy. Everything came back clear and her symptoms seemed to come and go. Some random vomiting, dizziness and headaches, stomachaches, and the neverending diarrhea. We decided to wait and see, hoping things would just go away and they did....temporarily. Then she developed reflux, which quickly became so severe that she was getting sent home from school daily. She once again was given the FTT diagnosis. Her GI wanted to do another EGD/colonoscopy which only showed mild gastritis. She finally prescribed some Prevacid and the reflux subsided. The diarrhea, however, became pretty intense and she was soon having several accidents a day. She had Prometheus testing done and was shown to have genetic markers for Crohn's Disease. That's the first I'd ever heard of this disease, but once I researched it it did seem to fit. I decided to get a 2nd opinion and found an amazing doctor in Orlando.

This doctor ran a million labs and stool tests, all normal. I was shocked. He then had her do an MRI which showed possible thickening of the TI but nothing definitive. At that point he decided she suffered from IBS and gave her Hyomax to deal with the stomach pains. That provided very little relief. He also made a Behavioral Health referral (which I haven't acted upon just yet). Due to the severity of her symptoms and small size he decided to do an EGD/colonoscopy just to be thorough. Visually things looked normal and we were told that she had IBS and to come back in a week for biopsy results. Interestingly, she was found to have bacterial overgrowth, focal cryptitis, a patchy increase in eosinophils in all the colon biopsies, and the stool sample taken was said to have "few polys". The GI said these results weren't a "slam dunk" for any diagnosis and was very careful not to throw out too many medical terms. Because I'm somewhat untrusting of doctors I asked for all the reports so I could study them myself. He said if her fecal calp test came back abnormal he'd feel more confident that this was IBD. Because it didn't he says it is just another piece to the puzzle.

Amazingly, the colonoscopy prep seemed to help her tremendously and treatment was put on hold. Symptoms returned a few days later and she was started on a 2 week course of Clindomycin (antibiotic). She finished that up last week and has now come down with the flu (although very minor because she started Tamiflu almost immediately). I'm hoping the recent diarrhea is flu related. If it continues I was told to call the GI and a 5-ASA medication would be prescribed. She has another appointment in about 5 weeks to re-evaluate symptoms and check her growth.

I'd love to hear what you all think about the recent EGD/colonoscopy findings. My daughter is 47 inches tall, 43 lbs, and very lean and muscular. She's a competitive dancer and amazes me with her strength and determination daily.
02-17-2013, 07:30 PM   #2
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Hi and welcome aboard.

I'm so sorry your girl has to go through this.

I do have a question. When they found the eosinophils in her colon, what did the GI say was the cause for that??? Also what was the number?

It is common to have eos in you track with IBD. Not that you have to have them but their's other conditions that cause a rise in eos's in your body?
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
02-17-2013, 07:38 PM   #3
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The GI didn't mention them specifically but it is in the pathology report. He referred to it only as "inflammation". No specific number was given in the report.

It says:

Cecum biopsy: increase in the density of intraepithelial lymphocytes

Transverse and Descending colon biopsy: increase in the density of intraepithelial lymphocytes

Rectosigmoid biopsy: increase in mucousal eosinophils (present throughout colon but most pronounced here)

I'm honestly not sure of the significance of any of this.
02-17-2013, 07:40 PM   #4
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Hi! Welcome. I think your daughter's scope findings sound similar to my daughter's -- she also had focal cryptitis (left colon -- where was yours?) and she does have h. pylori (which is bacteria although they didn't call it "bacterial overgrowth" -- they said mild chronic gastritis with focal activity and rare h. pylori -- this is in the stomach. She also had focal inflammation in TI. So, this wasn't diagnosed as Crohn's and they basically called it non-specific inflammation. But, they did start her on Sulfasalazine (5-ASA) -- and she is now on her second round. We may be looking at re-scoping soon -- this was almost a year ago.

It is frustrating not getting answers!! But if they at least treat with something that will work for her that's heading in the right direction! Good luck!!
Supermom to 2 girls: Little Girl (4) & Big Girl (7)

Little Girl: Undiagnosed (scope 4/12: non-specific inflammation in TI & colon, gastritis & h. pylori in stomach), Asthma, Food Allergies
Sulfasalazine, Miralax, Folic Acid, Zyrtec, inhalers
02-17-2013, 07:44 PM   #5
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Did the report mention anything about the villi (?). That's the tiny hairs lining the track?
02-17-2013, 09:06 PM   #6
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The focal cryptitis was found in the TI. She was negative for H.Pylori; the bacterial overgrowth was found in the intestinal fluid. The villi were said to be architecturally normal.

So glad I asked for a copy of the reports because there is no way I would have remembered this stuff, even if he'd explained it 5 times over!
02-17-2013, 09:31 PM   #7
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Actually, after reading the report for the millionth time it does mention something about the percentage of eosinophils (not sure if that's what you meant). The transverse and descending colon has a population of 25-30% eosinophils with a patchy increase in mitotic activity in the crypts. The rectosigmoid has a population of 30% eosinophils, also with a patchy increase in mitotic activity in the crypts.

Even after googling I have no idea what that means, lol.
02-17-2013, 09:41 PM   #8
my little penguin
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From your other thread ...
If you are seeing Dr F .( I think its the same one that ran the cced at cchmc ( Cincy))
Then he would have picked up on any egid ( EoE , or EGE etc...)
Very quickly so if he hasn't mentioned it you should be fine.

I hope you get answers soon .
It took us over a year to get a dx once we started pushing but DS had Gi trouble since he was two weeks old .
DS - -Crohn's -Stelara -mtx
02-18-2013, 03:47 AM   #9
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Hi and welcome. Just wanted to wish you luck getting the answers so that your daughter can start feeling better. The only test that ever showed anything with my son was the calprotectin, and because of that we got the colonoscopy ordered which confirmed Crohn's. Doctors are very reluctant to diagnose something like Crohn's which is good in a way but doesn't help our kids that need treatment asap.
02-18-2013, 09:19 PM   #10
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Welcome DanceMom! What is FTT? Allergies? I hope you get definite answers for her soon.
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
02-18-2013, 10:18 PM   #11
my little penguin
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Is failure to thrive
Basically underweight or under height or both
02-19-2013, 12:08 AM   #12
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Sorry to hear things have been rough. Someone else mentioned food allergies. What about Celiac Disease? The normal looking villi would lead me to believe its not Celiac, but maybe gluten intolerance or some other food intolerance?

I hope you find some answers soon...
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
02-19-2013, 06:44 AM   #13
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She's been tested for food allergies several times. The first test was positive for celery, string beans, and shellfish (and a ton of environmental things). Because her eosinophils were so high at the time and she had never reacted to those things the allergist said they were likely false positives. She was retested a year later and was found to be allergic only to citrus and tomatoes. She had a strong reaction to citrus a few weeks before testing so we considered that to be a true allergy but avoided the tomatoes as well, as a precaution. One final allergy test, a year later, revealed no allergies. We've tried elimination diets more times than I can count with no improvement in symptoms.

From what I've been told she's been tested for Celiac's more than once and each time was negative. She does have a cousin with Celiac's but it looks like that isn't the case here.
02-19-2013, 09:39 AM   #14
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DanceMom, welcome to the forum. I'm sorry your daughter is so unwell Its so hard watching our kids suffer. My 11 year old has ulcerative colitis. She was unofficially diagnosed with Crohn's in 2009 at 8 years old. Her diagnosis was changed in Mar 2012 to UC. She has been through so much as well. Like your daughter, Devynn had severe constipation as a baby and young child, which changed to diarrheah. At one point she was having several accidents a day. She was started on Pentasa (ASA drug) at first and had amazing results, but after a death in the family she went into a flare (2011). Her meds were changed to Mezavant which didn't work and then finally Sulfasalazine in Nov 2012 which is working and she is feeling much better.
I hope your daughter starts feeling better soon, and you get answers.
Samantha, AKA Devynn's mom

Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012

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