Newbie with questions

[Bean's mom]

My daughter hasn't been diagnosed (yet?) but I was hoping that someone could help me interpret some test results...

Her lactoferrin test was positive and her gastroenterologist requested another test to confirm and that was positive as well. Then he ran a quantitative stool test (two weeks for results) and that came back as "normal levels". The whole thing baffles me (and the doctor seemed baffled as well...)

So I'm wondering...
Can the lactoferrin test have a false positive? (twice)
Can high lactoferrin indicate anything other than IBD?
Why would two lactoferrin tests indicate inflammation, yet the quantitative test indicate none?
Her gastroenterologist is thinking of doing a colonoscopy and endoscopy -- will there be evidence of IBD even if she's not having a flair at the time?

A brief history of my daughter: Bean is 11 years old; she has Pancreatic Insuffiency, Atypical Cystic Fibrosis, Fructose Malabsorption, allergies to trees and weeds, and Asthma. The PI and FM symptoms are similar to Crohn's, so Bean's diarrhea, constipation and pain doesn't necessarily give us clues...

She's been tested for parasites (as I understand it, the only other explanation for high lactoferrin) and it was negative. Her gastroenterologist is considering giving her Flagyl anyway -- but we did that last summer and it did nothing for her stomach pain. I'm not inclined to do it again.

Thanks for any insight you can offer!

 

[Farmwife]

Hi and welcome.
Sorry to hear about all the health problems.
What caught my attention is my 3 yr. old has been checked for all those symptoms. She did have a bout with asthma. Grace did have c. diff which is probably what they were testing yours for. Flagyl is a known antibiotic for c. diff among other things.

Sorry not too much other info to give. My girl is still undiagnosed.

Welcome again,
Farmwife

 

[kimmidwife]

Hi Beans Mom,
I am sorry not to have some insight for you other than that usually the colonoscopy should show something if she has crohns unless it is in an area they can't see with the scope then sometimes they need to do a pill camera.
I wish had som more answers for you but hopefully the tests will give you some.
I wanted to welcome you to the forum. This is really a great place to get help and support from others!

 

[dannysmom]

Hi! Welcome!! I am not sure what the quantitative stool test was measuring ... do you know? A fecal calprotectin test is similar to the lactoferrin. I am sure it must be confusing to your doctors given Bean's other diagnosis. A scope could be useful.
The atypical Cystic Fibrosis dx caught my eye. Would you mind sharing what is atypical about her diagnosis? My son Danny (15 now) is also undiagnosed .. but undiagnosed for everything. Some tests come back positive, but not all, so the dx is always considered inconclusive. After some hemoptysis he had 4 positive sweat tests in the CF range, so for a while we thought he had Cystic Fibrosis - but after full gene sequencing only one known mild mutation was found plus 3 mutations not considered disease causing. A nasal potential difference test did not indicate CF. I sometimes wonder if Danny's GI tract is just has more/sticky mucus that contributes to his symptoms .. but that is just me guessing. (He is considered pancreatic sufficient )
Please keep us updated!!

 

[Patricia56]

I am very sorry to hear your story and that your sweet girl is hurting.

Part of the reason the doc may be leaning towards Crohn's is that there is a known association between CF and Crohn's. Here is a link to a recent article that discusses treatment of a patient with both disorders that also provides some background information that may be helpful to you.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2856836/

I can't really comment on the differences in the test results. Could be lab error, test collection error, random universe error... who knows.

When you have a medically complex child like this it becomes difficult to sort out what is what, as I am sure you know.

What do her labs look like? Anything unusually abnormal? I assume her doc has ordered basic screening labs like CBC w/diff, CMP, CrP, ESR? What about ferritin, GGT, thyroid? Wracking my brain for things our ped GI orders that might not be on a typical order for your kiddo.

If it were me, I think I would be asking about non-invasive testing first. An MRE (magnetic resonance enterography) will usually show inflammation in the gut and might help guide the decision on scoping her.

Worth talking over with her GI as I am sure there are pros and cons to each approach, especially if she has trouble holding still or otherwise cooperating with imaging studies. I would think with her CF that doing scopes would also raise issues with giving her sedation though.

 

[Bean's mom]

Thanks for the replies! I wish I could say I'm happy to be here, but maybe you'll forgive me for not quite feeling like that -- but thank you for the greetings. It's nice to make contact with moms going through all the same things...

Dannysmom-- about that CF diagnosis... Bean has always been tiny and fidgety and severely underweight. She was adopted from Russia, so no one knew if it was just her genetic makeup or if something was wrong. Year after year, she held her growth curve -- even if that curve wasn't actually on the charts. However, her BMI was all over the place. Sometimes it was as high as 11.5 but more often it was down around 7.8 and finally the pediatrician sent us to a specialist. We went to an Endocrinologist, then Nutritionist and finally a Gastroenterologist.

He ran stool tests and determined Bean was malabsorbing fat, so then he sent us for a Sweat Test. Twice it came out in the borderline range. Based on that, he wanted us to do the 72 hr Fecal Fat test. (Ugh.) Bean has "severe" Pancreatic Insufficiency. Since there are only a few conditions that cause PI, CF being the most common, gastrodoc ordered the genetic testing. Bean has one known mutation, however there could be another unknown lurking...

When she was diagnosed with PI, she started taking Creon (enzyme) and it changed her life! She no longer shook all the time, she could last longer than 90 minutes without eating, and she suddenly learned to read. However, the one thing that didn't change was her weight. She remains severely underweight. Some pulmonologists feel that since she didn't gain weight with Creon, then she doesn't have CF. But other pulmonologists feel there is enough signs and symptoms to warrant following her closely. Since she doesn't have a firm diagnosis, they've called it Atypical.

As soon as Bean started on the Creon, I noticed that all of her shaking and hyperactivity came back whenever she ate sugar. Gastro doc looked at a ton of things, but we just couldn't figure it out. Then I read about Fructose Malabsorption and he agreed to the test. If she had a reading on her breathe test of 20 or above 3 times in a row, it was positive (it was a 3 hr test) Bean's readings went up to 230! During the test, the nurse asked how she was and she said "fine" and I told the nurse she wasn't fine at all. She almost threw up, her poop turned to water within 30 minutes and I'm guessing her stomach hurts. Then Bean said her stomach ALWAYS feels like that when she eats... She never knew her stomach shouldn't feel like that. Sigh.

The stomach pain persists to this day. She still can't gain weight. We made some progress by following a restricted diet, but lately the pain is there no matter what she eats. She pushes away rice, which is one of the few starches that she could eat. I read about another condition called CSID (congenital sucrose isomaltase deficiency) and I believe that's what gastro doc was looking for in this last set of blood tests... Sugar malabsorption was negative -- but the lactoferrin came back positive.

In addition to constant stomach pain, Bean mentions a lot of leg pain (that's been fairly consistent for a couple of years) and some eye pain, which is a new complaint. She says her eyes burn and they hurt in the sun. She's always gotten a rash on her bottom (well past diapers). She gets occasional sores in her mouth. She sometimes gets little pimply looking marks on her face. Gastro doc said that is classic signs of Celiac, but her biopsies from her endoscopy two years ago turned up negative. He's been considering doing another endoscopy because those symptoms are still there. But I think the high lactoferrin at least it making him stop and consider Crohn's. I don't know if any of the above symptoms match Crohns or if that still points to celiac...

Bean's blood tests have never been normal... Her hemoglobin, hematocrit, RBC, and MCV are elevated; her MCHC, RDW, and HDW are low. Her bilirubin is low. Her lymphocytes and eosinophilic are elevated (and are ALWAYS high). I don't know what any of it means. All I know is that it means just enough that her gastro doc doesn't think I'm a crackpot -- he's still looking for a cause of her pain, failure to thrive and weird blood tests.

So if any of that rings a bell in anyone -- even if it means checking out a completely different forum -- I'd be ever so grateful for any help understanding what is going on with Bean's stomach! Thanks!

 

[David]

Hi there and welcome

I am so sorry to hear of your little ones struggles I can't imagine how hard that is on all of you. My heart goes out to all of you.

*hugs*

The c.diff could cause the positive fecal lactoferrin tests. Of course, it could be something else as well (let's hope not).

As she's from Russia, make sure they rule out Behcet's disease.

 

[dannysmom]

Thanks for the details Bean's mom! The symptoms of Crohn's vary quite a bit form patient to patient. Some members here only have growth as a symptom yet meanwhile their GI tract were filled with ulcers. Joint and eye pain could be EIM related to IBD too. It is really good your doctor plans to investigate Crohn's - he sounds wonderful. It is great that the CREON helped her ... maybe just with some other medication she can feel much better. (Are her lungs OK? I so hope so)

"All I know is that it means just enough that her gastro doc doesn't think I'm a crackpot " LOL
Danny just has enough (barely) to keep me from looking like a crackpot

 

[Catherine]

Hi

We have also had the testing for fructose and lactose, my daughter problem is lactose.

Did you have more serious fructose disorder ruleout, HFI -Heredited? Fructose Intolence.

 

[Farmwife]

My Grace has some of the same problems.
Bad joint pain flare up. Only lasting minutes to a half an hour.
Eye pain once in a while. She doesn't tall me if it burns. She's only 3.
She gets pimple like bumps on her legs and upper arm.
Hard to keep her at a constant weight. We do EN for breakfast and Dinner which helps greatly.
I hope that helps.

 

[Patricia56]

You may be interested in looking at Complex Child Magazine, an online magazine for parents of children with complex medical issues. It's a great resource created by and for parents of kids with complex medical issues. I know the parents who write and publish this are always willing to try to hep other parents and they may be able to suggest some other directions to explore. There are also many very thorough articles addressing the nutrition needs/challenges of medically complex children.

http://www.complexchild.com/

You might want to discuss with her doctors the possibility of submitting your daughter's case to the NIH Undiagnosed Diseases Program. There's more info in this article in Complex Child Magazine.

http://www.articles.complexchild.com/feb2009/00107.html

I guess I would be asking if it's worth trying something relatively low risk, whether it's a gluten-free diet based on the possibility of celiac's or a 5 ASA drug like Pentasa, to see if it improves her symptoms and growth.

I assume that she is being seen at one of the big Children's Hospitals in the Boston area. Has her GI shared her case/consulted with other top docs in the area? Baldassano at CHOP is pretty much the top doc in the country for Ped IBD. If the GI is seriously considering IBD then I would suggest you ask that he run it by Baldassano for an opinion.

Sorry she is hurting so much. She has one great mom.

 

[dannysmom]

Hi Bean's Mom. .. in case you did not notice in the article that Patricia provided ... it said that Crohn's is 17 times more likely to occur in CF patients than in normal population. If it is IBD (in addition to CF)... then hopefully this will be the last piece of the puzzle for Bean's health. A colonoscopy should help and perhaps a pillcam too. Maybe local acting meds like Pentasa (or even some Entocort for a while) will help.

 

[Naturelover]

Hello Bean's mom! Welcome to the forum! I will be praying for you and your family that your daughter can feel better and that the remaining pieces to the puzzle fall into place.

I have a son, 19, who was and still is medically complicated. He doesn't appear to be as complicated since he is able to be more in tune with his body and is old enough to know what sets him off and what helps him. The docs dx him with fruitcose malabsorbtion and intolerance even though they could not get the 3 hour test completed due to his severe delayed gastric empting. The dx was based on observation of what happened as soon as he had food or drink with fruitcose. We flew to CHOP to have the full GI motility study done right before he turned two. He had his birhtday at CHOP because the docs didn't expected him to have the complications that he did. He was at CHOP much longer than the docs anticipated he would be. He had ng-tube feeds, j-tube feeds and g-tube feeds. Once eating orally, supplement with EN. He still uses EN. He has a long list of symptoms but no dx to date.


My daughter is 14 and is having GI issues, pelvic pain, gyn issues, ruptured - blood filled - ovarian cysts, hooked coccyx (painful condition), coccyiodenia (sp?) [this is coccyx pain - I think her constipation is contributing to her coccyx pain]. She is having severe constipation and her colon is more than twice it's normal size. She takes 4 Senokot and 1 Amitiza in the morn; 3 Ducolax Laxitives and 1 Amitiza at night and is still having difficulty with BM. C-Reactive Protien blood work done this past May shows inflammation. X-ray yesterday shows area of colon up by her rib cage to be grossly enlarged and full of gas and stool. There is a solid mass with no gas located elsewhere in her colon as well as a bigger solid mass with no gas in her colon that is right in front of her coccyx. We will be doing another C-Reactive Protien blood test as well as ESR, TTG, IGA and Total IGA blood test this week. Still no dx for GI issues. The NP said that we may possibly do a motility study. We have to wait until we see the doc first.

I myself was dx w/IBS when I was first out of high school. I have a long list of health issues that I grew up with, with no dx on those and CRPS/RSD - a progressive condition. Since dx of CRPS/RSD, July 2011, my other health issues have gotten significantly worse. I do daily IV hydration therapy at home.

I am sorry to hear of your struggles and your daughters struggles. Dealing with the health issues in my family as well as being connected to other families dealing with significant health issues, whether dx or un dx, I can honestly say you are way stronger than you think you are and your daughter has a very strong will and good spirit. Children don't know that they are not supposed to feel discomfort in their body. They learn early on to adapt and make the most of it in order to enjoy and succeed in life; and succeed they do!

Check out this website to understand lab test: www.labtestsonline.org/

You can research health conditions and medications here: www.drugs.com

You can research health conditions and medications here as well: http://www.mediguard.org/

You can check medication interactions, safety alerts, recalls etc. on both drugs.com and mediguard.org

I wish they had a complex child magazine 19 years ago when I first started the journey with my chronically ill son. There is so much more available to the lay person today than ever before.

Once again, you and your family are in my prayers.

Blessings, Naturelover

 

[Catherine]

You may want to try this group they have lots a receipts for fructose mal. Great group to of parents.

http://www.fructosemalabsorb.proboards.com/

 

[DustyKat]

Hi Bean's mom and :welcome:

You have been given fab advice so I don't much to add.

Just a comment about the pancreas. Acute or chronic pancreatitis is an Extra Intestinal Manifestation and it often precedes a diagnosis of Crohn's. Chronic pancreatitis is a cause of pancreatic insufficiency and although it is considered more a disease of the adult population I personally wouldn't rule it out.

Prior to my own daughter's diagnosis of CD she was diagnosed with acute pancreatitis. Her Crohn's is located in the terminal ileum but her mainstay symptoms were upper epigastric pain, knee pain, headaches and sore eyes. May just be something to mull over.

I surely hope you have solid answers and soon! Good luck!

Dusty. xxx