Daughter's Diagnosis (I'm a bit confused)

[fringle]

Hello,
My daughter is 11yo and only 44lbs. She suffers from on/off bouts of diarrhea, and chronic pain in her entire abdomen area, especially the lower abdomen. She finally had a colonoscopy done with a few biopsies. The Dr's diagnosis is "Unspecified Colitis and Non-Infectious Gastroenteritis." She said it doesn't look like Crohn's, which I'm happy about. However, after I left the office, I realized I didn't understand what noninfectious gastroenteritis means. I think I understand the unspecified colitis, but again, I'm not sure.
I've been reading this board a lot of the last 2 weeks. I'd love to get some of your thoughts on this. Thanks!

 

[Jennifer]

Hi fringle and welcome to the forum! I'm sorry to hear about what your daughter has been going through.

"Gastroenteritis is a general, nonspecific term given to a variety of conditions causing inflammation of the stomach and intestinal tract. Its most notable sign is the sudden onset of frequent bowel movements with loose or liquid feces (diarrhea), associated with nausea and vomiting, as well as abdominal cramping, abdominal pain, weakness, and sometimes either fever or chills."

"Noninfectious gastroenteritis is usually due to food or shellfish intoxication (caused by bacterial toxins); medication, chemotherapy, or radiation therapy side effects; or underlying conditions such as ulcerative colitis, Crohn's disease, certain cancers, or AIDS. Its severity may vary from mild and inconvenient to severe and life-threatening."
http://www.mdguidelines.com/gastroenteritis

Colits in general simply means inflammation in the colon. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002112/ Its possible that the Gastroenteritis caused the inflammation in the colon or its possible that an undiagnosed condition such as Crohn's Disease or Ulcerative Colitis (since the colitis is "unspecified" meaning unknown at the moment) could have caused the Gastroenteritis. If the symptoms continue or get worse then I'd continue testing.

What sort of treatment did the doctor suggest? Her low weight really needs to be addressed at the very least. Crohn's is notorious for weight loss yet I do hope she doesn't have it, it can take a long time to get a proper diagnosis for Crohn's though. Its my understanding that Gastroenteritis should clear up within a few days yet if she had to get a scope done and wait for biopsies and you're still looking for information, my guess is these symptoms have been going on much longer than a few days. I'm going to move your thread to the Parent's section as you may get more responses there.

 

[DustyKat]

Hi fringle and :welcome:

Jennifer has given you fab advice and info so I just wanted to welcome you and ask if by chance you have the colonoscopy results and can you post them here?

I see your daughter has weight issues, does she also have growth issues?

Has she ever had inflammatory markers done?
ESR & CRP (blood) and/or Faecal Calprotectin.

I surely hope that your daughter doesn't have IBD and that whatever is causing her problems is easily treated and resolved, bess her. :heart: Good luck!

Dusty. xxx

 

[Dexky]

Welcome Fringle! I think Jenn about summed it up. It sounds like you're gonna have to continue to search for a concrete answer. How long do the bouts of D usually last?? How is her appetite in general? I hope it isn't IBD but any chronic condition needs to be dealt with. Good luck!!

 

[ChampsMom]

Hello Fringle,

So sorry to hear about your daughter's illness - but I'm glad you found the forum so fast! Lots of great information, love and support found here...

Have the doctor's given you a plan of action yet? I pray you get the answers you and your daughter need to get her feeling well soon!!

 

[fringle]

Yes, she is not on the growth chart neither for height nor weight.

The Dr ordered more tests and we did them yesterday. The poor girl had 7 vials of blood taken. I thought for sure she would pass out, but she held out really well. We are waiting on those results before we can go forward.

The results of her colonoscopy showed, moderate to severe colitis, and swelling in her large and small intestines. However, she had a ton of lymphoid hyperplasia so they could not access all the areas they wanted to. They did take some biopsies and they were all clear.

I wanted to feel like we were "out of the woods" on this one, but now I'm not so sure.

Thank you all so much for your replies. They are much appreciated.

 

[Dexky]

Did they suggest further testing for allergies or attempting to rule out food sensitivities. If biopsies are clear and inflammation markers are good, that's a possibility I would think. I hope there's a simple yet clear answer for her!!

 

[my little penguin]

^^^^
Yeah that
Did they look for EGID?
I would have the biopsies re read
If you are in the US
Then cchmc or chop of Bch
For specifically EC
http://apfed.org/drupal/drupal/index.php

 

[dannysmom]

Hi and welcome. How long has your daughter been having these symptoms? What is your doctor's plan given she is still suffering?

 

[CrohnsKidMom]

Welcome to the forum Fringle! I'm sorry to hear of your daughter's illness, but you'll find a lot of help and support here. I would echo the others, and say that further testing needs to done to pin down the diagnosis. Is your daughter anemic? That would suggest a problem in her small intestine where her nutrients would be absorbed. All the best to you.

 

[fringle]

Thanks again for the replies. She's been having chronic stomach pains for about 3 years. She was tested for allergies a few years ago and those also came up clear. We are still waiting on the results of her blood tests. I'm not sure what the treatment plan will be yet since we are still waiting on those results.
We are not in the US and sometimes it's hard bc I'm not sure I always understand the Dr.
Again, thanks for "listening" and for all your advice/suggestions--very helpful!

 

[fringle]

Humm...this is quite an interesting site. I've never heard of this, however, I had the testing done with her as she and I have the same symptoms and my results came back the same as hers. However, on my blood work, I had high markers for several things, the worst of which was eosinophil levels. I had no idea what that meant. My Dr, however, didn't mention my blood work at all. We aren't in the US as my husband works abroad. My daughter's blood work should come back today.
Thanks!

^^^^
Yeah that
Did they look for EGID?
I would have the biopsies re read
If you are in the US
Then cchmc or chop of Bch
For specifically EC
http://apfed.org/drupal/drupal/index.php

 

[my little penguin]

They would need to count the EOS in the biopsy slides not the blood work.
Egids are rare and often missed if you are not looking specifically for them.

 

[Dexky]

We are not in the US and sometimes it's hard bc I'm not sure I always understand the Dr.

I do live in the US and I don't always understand our Dr. either!! I have to nail things down through e-mail! I do like him though. I think that is the most important thing…do you trust and like your doctor?!

 

[nolamom]

We just received a diagnosis of Crohn's for my daughter who is 17 and showed no prior systems. I am no expert but here is what the did for her to diagnose the Crohns: bloodwork, fecal sample (tested for white blood cells and blood present), Premethius genetic test (sample sent to labe in California to check the genetic markers for all of the types of gi/bowel diseases) takes about a week to come back and had to be approved by insurance. After that came back positive they did the endoscopy and colonoscopy. GI took biopsies but pretty much knew what it was by looking at it. Now the fecal sample and blood work for my daughter did come back negative for Crohn's since right now her case is mild. But, if it wasn't done I would ask. Again, I am knew to this disease and might not be using the right terminology but thought this would help. Good Luck!

 

[dannysmom]

3 years is a long time to suffer without help. I hope they can figure something out!

 

[Kimberly27]

Just a thought. Was she tested for Celiac? Perhaps gluten could be part of the problem...

I hope you find answers soon.

Kimberly

 

[CarolinAlaska]

No wonder you are confused. The terms that your daughter was given are all a bunch of nondiagnoses... essentially generic terms for we don't know what it is! I hope your new labs give you more answers. Since your daughter has weight and height loss - have they tested small bowel? That is where my daughter's crohn's was hidden and she had stopped growing and gaining too. A pillcam test is what finally nailed down the diagnosis because it showed inflammation throughout the small bowel. The MRE didn't pick it up either, but that is the test some people have success with. Has your doctor gotten a fecal calprotectin test? That test is pretty specific for bowel inflammation.

What part of the world are you in, if you don't mind saying... We have people all over the world on this board...