another clue?

[FMmom]

The gastro doc ordered a couple of stool tests before our appointment in August. He was checking for sugar malabsorption and pH levels -- which leads me to believe that he is looking for CSID. Unfortunately, a negative on either of those tests would not rule out CSID, but it's a non-invasive test that may give us some information I suppose...

I got a call this morning that Kaelin's "lactoferrin" was high. That indicates that Kaelin may be presenting with symptoms of IBD (colitis and crohn's. Eek!) This is a relatively new test that can test for white blood cells in the stool. Interestingly, she's had an elevated white cell count on her blood tests for the last three years.

We have to repeat the test to see if it was a one-off thing or she really may have Inflammatory Bowel Disease. Sigh. I've been hoping for an answer, but wow, I was never thinking of this! The nurse told me not to change anything -- and I needed to add sugar back into her diet for the first test, so we're adding it back in again... I've been trying to detox her from these inappropriate foods, but yay, I have to give her cookies and/or cake again. Arggggggghhhhhhhh!!!!!!!

Again, I have no idea if this particular test has anything to do with CSID, but Kaelin still craves pasta, yet will not eat it. I experimented with white rice (no butter, no flavorings, no sauces and no other foods) It was a quick snack meant to fill her up. She ate a few bites, but said it hurt her stomach too much. It was hard to get her to eat anything after that. So as far as I can tell, she likes yet cannot eat starches and she loves sugar but it makes her completely crazed.

Now I'm reading that sugar is one of the most toxic foods on the digestive lining and intolerable for anyone with IBD. Acidic fruits are horrible. Even if one doesn't test positive for a wheat allergy, it's still one of the most important foods to be eliminated.

No wonder doctors can't figure out what is going on -- the symptoms are the same for every single thing I read. I can no longer distinguish between CSID or IBD or FM or HFI. It all sounds like Kaelin because every condition sounds the same as the other.

I wonder if IBD could explain all the intermittent muscle and joint pain. Back to google...

[FMmom]

Kaelin's next stool sample still tested positive for lactoferrin. We have to do a quantitative lactoferrin test now. This one takes two weeks, which pretty much brings us to our August 2nd appointment.

I've googled every combination I can think of to see if high lactoferrin could mean anything other than crohn's or ulcerative colitis (best as I can tell, it can't); I've googled false positives (that only occurs on babies that are being breastfed -- clearly not applicable to Kaelin); and if this test is reliable (100%). So I can draw no other conclusion than she has IBD, but of course I'm going to wait for the doctor's appointment -- I'm thinking his completion of medical school and years of experience trumps my mad google skills.

I have thousands of questions, but I'm going to have to whittle it down to a manageable two or five -- or ten... IBD could explain why Kaelin is so tired all the time and why EVERYTHING hurts her stomach. But I wonder if she really has pancreatic insufficiency and FM and IBD or if she is getting false positives on some of these tests -- and how do we determine which results are false?

I see a lot more testing in Kaelin's future. She had an endoscopy two years ago and at the time, the doctor was also going to do a colonoscopy, but cancelled it because it's just too traumatic a procedure to do for a hunch. Now I fear she'll have to do it. And as long as she's under, he'll probably repeat the endoscopy. Or maybe he'll start with another barium test (she hated that!) Or maybe I'll just wait to see what he says instead of driving myself slowly mad...

Sigh

[FMmom]

Hi Lucky -- so good to see you again!

Thanks for the hugs, I can so use them... I have a sneaking suspicion that we do have a diagnosis, just not one we are privy to at the moment. Today we completed the last test and only the waiting is left -- and surprisingly, it has left me profoundly depressed. What I know is that Kaelin's lactoferrin is high. What I know is the lactoferrin means inflammation in the bowel. And now that it has been confirmed that Kaelin has inflammation, this last test is to see how bad the inflammation is.

It's entirely possible that lactoferrin indicates something other than IBD -- but right now I have a knot in my stomach. I've suspected for quite awhile that FM doesn't fully explain everything for Kaelin. But I just assumed that the answer would be hidden in the diet. Feed her the right foods at the right time and things would be better. I don't mean to take hypoglycemia or celiac or CSID lightly -- but adhering (however rigorously that may be) to a diet can keep things under control. I just wanted an additional diagnosis of CSID or something that gives me a clearer idea of what foods work and which don't...

But with IBD, even following a perfect diet and religiously taking meds will not prevent a flare-up. But on the flip side, eating some foods could trigger a flare-up. So I absolutely, very meticulously must figure out what foods Kaelin can handle -- and I have to start completely over. It's probable that white rice doesn't hurt her stomach, it's just that everything hurts right now. She may not have a sensitivity to salycilates like I originally thought, maybe her problem with zucchini is because of her newly discovered allergies to trees and weeds, which brings about a whole host of possible food sensitivities. But this time, instead of bad behavior when I give her the wrong food, I could introduce a world of pain -- an unintended flare. Sigh.

And she can't handle the medication...

I'm getting way ahead of myself and I know it. But I can't find anything anywhere that offers a glimmer of another direction. My aunt has been suffering with ulcerative colitis for 50 years and it's been horrible, just horrible. And (again IF it's true) Kaelin has pancreatic insufficiency, FM, allergies and CF on top of that. I can't wait for our appointment and yet I dread it. I think we are facing a lot of experimenting with meds and foods and Kaelin isn't always the most forthcoming kid.

But I'm still hoping that I'll come here on Aug 2nd and write that it turned out to be nothing, nothing at all. That the inflammation was caused by her allergies and the intense pollen we enduring this spring...

Again, good to see you again, Lucky! How is your son doing?

[FMmom]

Sigh. Lucky, you've tapped into my biggest fear -- I did this to Kaelin...

For ALL of Kaelin's doctors, her low BMI is the biggest concern. And that concern has only heated up as she gets older. Gastro doc feels like we are getting to the point of no return.

So, knowing that the FM diet is "not medically necessary", I have served Kaelin various foods that are not on the FODMAP diet. I've added milk and Lactaid (which worked, but only briefly). And I keep feeling like this really IS medically necessary, so while I'm giving Kaelin more calories, I am ultimately doing her great harm. I understand what the doctor is saying: eating fructose is not going to destroy villi like gluten does to people with celiac. It's not going to put her into shock like a peanut allergy would. But what the medical community is failing to look at is the stress I'm putting on Kaelin's body. It just has to have some effect. Hypoglycemia, in and of itself, does not harm a body -- but you certainly found out just how much damage it can do!!!!

So I have been wondering if our decision to go off-plan would eventually take its toll. I wondered if eating sugar, while not flattening out villi, would produce stresses that lead to some other physical (and possibly permanent) manifestation.

Now, I do know enough about autoimmune disease to know that I didn't cause this simply by giving Kaelin milk or sugar or flour. But I did increase all of those things recently and she's been in pain every single day. Usually she just takes that in stride, but she's been telling me about this pain more and more. She turning away food because it hurts too much to eat, ironically causing her to lose weight... I'm sure that while I didn't cause Kaelin to have IBD, I probably caused a flair.

The worst part of this is that Kaelin hasn't been diagnosed, so this is a hunch based on the tests that gastro doc ran which came back positive. I don't know what comes next. Right now we are waiting on the quantitative test that, according to every piece I've read on the web, indicates how much inflammation Kaelin has (and, actually, that is what the nurse told me, but she would not confirm nor deny that the initial testing means crohn's...). We need those numbers for medication; the doctor may want to perform other tests like barium or maybe a colonoscopy. So I wonder if this is like testing for celiac -- don't make any changes to the diet before the test because you might not get accurate results. Do I keep giving her these things? Do I back off?

I've decided to back off to some extent. No sugar, no pasta. But I'm letting Kaelin make the call on some items. If she wants a hamburger, I say okay. But she ends up ripping the bun off. She is sort of self-selecting, but I don't think either of us really know what is causing the pain. It may be an assumption on her part based on what she's heard me say.

Some days I look at her and want to cry. My aunt was so miserable with IBD and she didn't get it until she was in her 30's. Does getting it at ten make it more severe? Or is it something that people actually have from a young age, but generally miss the diagnosis until much later? Is she better off by discovering it at ten? These are questions I can't answer until we meet with the doctor and actually get a diagnosis. So I tell myself there's nothing to worry about. Yet.

And oddly enough, that does not help me sleep at night...

[FMmom]

Oh -- a couple of things I didn't address before posting last time...

Kaelin's gastro doc looked into all of her meds when she tested positive for FM -- it was the first thing he said to me when he called that morning. But after reading about CSID, I've wondered if there is some other sugar in any of her meds that I should be concerned about. I can't imagine why any pharmaceutical feels the need to put sugar inside a capsule, but they do. A number of meds have sucrose and maltose, so I'm still wondering if there is an issue.

You asked if IBS and IBD are the same -- nope, although they share a lot of symptoms which is why IBD is hard to diagnosis. IBS, irritable bowel syndrome, is the name for any sort of unexplained bowel disorder. I've also read that about 75% of the cases are FM. People have diarrhea or constipation (or both), crampy pain, gas, watery stools... It's considered a "functional disorder," it do not display pathologic abnormalities.

IBD, inflammatory bowel disease, is an autoimmune disorder. It does a lot of damage. Ulcerative colitis affects the first layer of the colon and as the name implies, has a lot of ulcers along the colon. Crohn's can be in the small or large intestines or the stomach. There is inflammation in every layer. IBD has a genetic predisposition triggered by an environmental factor such as an infection (which is why I feel guilty -- yeah, it's genetic and there is nothing I could do about that, but I wonder if feeding her so many foods that her system cannot handle brought this out of hiding... Sigh)

People with IBD have to be ever vigilant about colon cancer. I read a very scary bit about how the younger you are when you present, the higher your odds of developing cancer. So if Kaelin does have IBD, she'll need a colonoscopy after eight years, then probably every two years after that. My aunt had colon cancer (I just found that out from my mom when I was telling her how scary that is to me... "oh, Aunt Ann had that. It was really terrible." Hey, thanks mom, I'm feeling loads better!)

Supposedly, IBS can be controlled through proper diet and the use of diarrhea meds. IBD may require surgery (my aunt had to get a colostomy) or some immune-suppressing therapy, which my aunt took in abundance often becoming bloated and feeling sick from meds.

More than you ever needed to know -- but truth be told, I'm going into detail because I'm trying to explain my rather obsessive fear of hearing an IBD diagnosis in a few weeks. I know I'm nuts for getting hysterical over a diagnosis we haven't received, but I can't find ANYTHING else that can explain two positive lactoferrin tests, so this must be true. It may be nice to finally have an answer, but it's killing me.

I thought that I was getting dangerously close to the line where her gastro doc accused me of munchausen by proxy -- but to his credit, he just keeps looking for an explanation. I always thought I'd be thrilled to finally hear. I was totally okay with HFI or CSID or celiac. But this has thrown me, totally. I don't know if it's because it was so unexpected -- in my wildest dreams I never guessed this and gastro doc never hinted at the possibility -- but I suspected it's really rooted in knowing what my aunt has endured all these years. Sigh.

[Charlie Arnold]

Hi Fmmom,

I am sorry I haven't replied to this earlier. For a while I actually left it up to others to reply to you in the hope that others may feel able to contribute as although we have a reasonable amount of new members and alot of visitors very few are posting. Without everyones input we cannot build on our knowledge. However so far only Lucky has, and so eloquently, replied to you. Thank you Lucky for your lovely posts, to be honest you have said alot of what I would have done.

But listen to me Fmmom, I do so feel for you, I feel your frustration, your tears, your anger, your sense of helplessness sometimes, I have been following you round that big frustrating circle with my own experiences. BUT BUT BUT you MUST MUST MUST BELIEVE IN YOURSELF. For Kaelin's sake.

The main problem we, as parents have is that we feel the medical professionals know best, and most of the time, yes they do. After all they have done the training, the years of blood sweat and tears to get the qualifications that they have. However, every so often a lesser known condition comes along like fructose intolerance and they just don't know. lets face it, no one can know absolutely everything and there are so many diseases how can they possibly be expected to know about everything. Which is where we as parents have to take the helm so to speak.

So little is known about fructose tolerance problems that they are often left guessing, they know how fructose is absorbed and digested but not what happens when it all goes wrong, so we need to start piecing it all together. And one of the biggest questions to ask is - is it all just fructose intolerance, is it just one enzyme missing or a chain of enzymes missing which means that other sugars eg as in CSID are also an issue. Or because one step goes wrong, that triggers alot else to go wrong. In a large adult body it may not cause so much a problem, but in a small growing, sensitive child has a huge impact.

One day we will know more as we all put our experiences sensibly together and hopefully that is something this board can achieve.

But back to you, never, ever doubt yourself and stand firm with what you believe, luckily it sounds like the medics are on your side, but it is all so bizarre yes they will at some stage question it all, I have accused myself of munchausen by proxy too and worry that that is what our doctors think as sadly there are cases of that. But absolutely not in our cases, and if you can continue to keep the excellent dialogue that you obviously have with them they will never give up on you but keep working with you to find answers.

So believe in yourself, you are doing such a great job with looking for answers for Kaelin, you plod on regardless of negatives and ask very intelligent questions showing you really want to help her so whatever the outcome you know you have done absolutely everything you can for her. Take ideas on board, compartmentalise them as possibilities but don't get negative about it all, its easy to read worse case scenarios, but just think of it all as part of the jigsaw.

Also, something I've realised is important recently is take time just to be a mum too, so you can enjoy this precious time with them before they grow up. Yes, keep an eye, keep searching, keep experimenting with foods etc but enjoy them too, go off duty sometimes to just re fuel..........

I think my next step is to go for private bloods on Megan, Lucky has told us about how much better her chap was after they rebalanced his electrolytes, I have tried with the dietitian to broach that idea but they think, at a cursory glance at her diet says she is getting everything she needs except vit C. But I found a nutrition doctor who has actually dealt with HFI (in fact he diagnoses it in one patient) and he talked at length about the chemical imbalances Meg may be suffering from and alot so makes sense. To get answers they need to various blood tests, it will set me back about £300 but if it gives me answers then that is so well spent. Especially as it may save me having to pay £700 for an educational psychologist........... He talked about Vit C, Vit B, magnesium, calcium etc etc, I lost track but he is the first one to make sense (apart from you Lucky) along those lines.

But until I can get that set up, I TAKE CHARGE. We have 6 weeks summer holiday from school so I can clean her out, get her better balanced and take note of the effects, then add a few things back in and see what happens. But I am being very firm, there is no sugar, no sweets, nothing she can possibly sneak. Especially as she has started what looks like hayfever, really puffy face and runny sore eyes, but I think that is a worse reaction to foods as it isn't getting worse around pollens. It is hard, she is cross with me, but it is worth it to get her healthy, the first couple of days she stropped big time, but now she is accepting it and we are working together to think up some new dishes and I think I heard a few comments about the wrong sorts of foods setting her off so maybe it is sinking in. I so hope so.

It is going to be hard for these kids to accept, but if they understand why, and feel the benefits then hopefully they will stick to it themselves. All we can do is advise, support and be there.

Right I'm going to shut up now, its getting exciting here as the olympics are starting tomorrow so I want to catch up on the progress of the torch relay. Oh, and what healthy sponsors they have for a major sports event - Coca coloa and McDonalds....... apparently they discourage you taking in food and drink so you buy there foods so we will be such a healthy nation by the end of it.................. not........................ We are going to the paralympic equestrian events as they were really cheap so I will have to check food restrictions so they don't have a vomiting, passing out Megan on their hands............

Take care all, keep your chins up, believe in yourselves and give yourselves a huge pat on the back for all the good work you are all doing to find out more about this confusing subject.

[catherine]

FMmom

I know a possible dx of ibd (crohn) is very scary. I just want to let you know that my Sarah health has improved so much since her dx with Crohn's in January. Sarah now weights 56kg a gain of 12 kgs in 6 months since dx. Her GI believe she may have a active crohns for 3 years prior to dx.

Crohns can only be confirmed by a colonscopy (or this my understanding).

Please try and remember that the drugs treatment for crohn have improved in the years since your aunt dx. If this is crohns the sooner your daughter started treatment the better.

I will try and check in more. Does she have Cystic Fibrosis I can't remember your daugther was the one.

Sorry I can't write more but I'm at work and the net is not working at home.

[FMmom]

Aaaaaauuuuuuggggggghhhhhhhhhhh!

The results are in -- and the level of lactoferrin is NORMAL! I don't get it, I truly don't understand this. How is it possible to have two positive lactoferrin tests that, according to all my google findings, does not result in false positives -- and then show the range of inflammation is normal?

Gastro doc ran tests to see if there was any parasites (the only other thing that could explain high lactoferrin) and that was negative. Good news I guess, but confusing. Gastro doc also said he was considering prescribing Flagyl even if there were no parasites. We did that last summer and it made no difference in how Kaelin felt, so I really don't want to do that again. I don't remember exactly what the problem was, but I do remember that I considering pulling Kaelin off the medication before we completed it (but didn't...) I just know I wanted the whole episode over -- and when it was, nothing had changed. Sigh

I read up on Flagyl and interestingly, it said that it is often used for Crohn's. So as I see it, we could conceivably treat the Crohn's without ever knowing that she actually has it. I mean, I'd love anything that treats Kaelin's pain, but if it is Crohn's I'd like it to be diagnosed, not just have the symptoms go away only to have it come back possibly worse than before. Sigh again.

The first thing gastro doc asked was when Kaelin returns to school -- if he decides on a procedure, he'd like to do it before she starts back. (thank you!) And just before we left, he said that he'd "order an endoscopy at the same time". So without using the word, he did tell me he's considering a colonscopy.

I do not want to put Kaelin through that -- but I do think it's probably the only thing that will answer all of our questions. I'm still not convinced that we've ruled out CSID -- it does need to be taken from a rather precise area and I don't know that the biopsy was done correctly last time since they were actually looking for celiac. So a colonoscopy/endoscopy can rule out (or diagnose) Crohn's, CSID or celiac. And then we'd be left with FM and doing a rigid diet. She's still pushing away any and all starchy items and she's still completely insane if she gets any sugar or sugar substitute (like having her teeth cleaned yesterday... Yikes!) so CSID still seems the most likely thing to me. But I'm no doctor -- and her tests are so weird, even her doctor can't figure her out!

Catherine, thanks for the reassurance. I have no doubt that things have I proved in the last thirty years (thankfully) and I'm so very happy to hear your daughter is doing so well. That is extremely encouraging to me if Kaelin does, in fact, end up having Crohn's. My concern is that Kaelin cannot handle so many medications (like prednisone) that it just many more months of making things worse before she gets better. Of course I'm getting way ahead of myself.

The thing that made me the most paranoid was a line in a book... When investigating a proper diet for various IBS conditions, I keep reading about the Specific Carbohydrate Diet. That seems specifically designed for IBD, so with the possibility of Crohn's, I finally got a book from the library. And when I tried flipping to the introduction, the place I opened to -- the first line I read -- said that you can die from Crohn's. Aaaaaaaagggggggghhhhhhhhh! It goes on to say that his grandson is pretending he doesn't have Crohn's and refusing meds and eating the wrong things which will kill him. However, anyone taking care of themselves will live a long and reasonably healthy life. So good -- but Kaelin can't take a lot of meds and she sneaks foods whenever possible and eats things no matter how much it hurts. She may need to get a little older before she chooses health over candy...

So thanks to everyone for listening to my rants and fears. And thanks for the encouragement. We have an appointment with the pediatrician in a couple of weeks so maybe I'll get some of my questions answered. Or maybe when gastro doc returns from vacation and hears that I don't want to do Flagyl, he'll talk about other options (namely the colonoscopy/endoscopy)

[Charlie Arnold]

Hi Catherine, great to hear about Sarah's improvement, that is fantastic and just goes to prove how vital the correct diagnosis is.

Fmmom, close that book and put it away straight away, it is may be a negative book which is not what you want at this stage. Yes, Chrohn's can be serious if not addressed, but you are addressing so on the right track. And as Catherine has said treatment has moved on miles recently, how old is the book you read? Please stay positive about it, what will be will be and if you finally have clear answers you can adjust, treat correctly and as Kaelin responds to treatment and her system responds positively your life will be so different. So wait till you get a diagnosis before worrying too much about the ifs and buts.

As for flagyl, Meg was put on that when she was 3 for helicobacter pylori infection which was inflaming her whole stomach they think and causing her symptoms. It helped the screaming pains in the middle of the night, but not alot else so maybe she had that as well as other problems.

If they are doing an endoscopy that sounds positive, although unpleasant if done well could exclude or confirm everything. I would be bossy and say you insist they absolutely test for CSID as well as Chrohns, it just means they need to be very specific what they do. It sounds as though your specialists are taking the lead from you a bit so make a specific plan and present it to them, I feel they will work with you.

[catherine]

Has Kaelin had the calprotection fecal test.

With the possibility of crohn I would look a avoid NSAID - aspirin, ibuprofen, codiene, if possible as they are not recommended for people with crohn.

SCD diet is used by lots of people with IBD, who think it does wonders and just many who believe it has no effect on their IBD at all.

Colonscopy may show crohn but the problem with crohn is that it can appear anywhere from the mouth to the anus. In a lot of cases the crohn is in the small bowel which can not be reached in a colonscopy. Sarah's had a colonscopy/endoscopy and MRI to help with dx.

[FMmom]

This whole thing is making me crazy!!!!! Before leaving gastro doc's office, Kaelin did a stool test for parasites and to re-run the lactoferrin quantitative test. Kaelin doesn't have parasites but gastro doc said he wanted Kaelin to take Flagyl anyway -- but I said no. I told gastro doc that I remember it didn't go well when we did this last summer, but I couldn't remember exactly why.

I found my notes and the Flagyl increased rather than reduced Kaelin's pain and there were a number of behavioral problems. I can get through the behavioral things (although it seems so unfair to knowingly make it harder for a child to function!) but the medication at a minimum didn't make anything better. And at least while she was taking the meds, it made things worse. So why do that again? The doctor was on vacation, so the nurse checked with him when he got back this week and he said to wait for the results from the lactoferrin test.

Except that the lab seems to have LOST the test. Aaaauuuuuggggghhhh! Are you *$&%^# kidding me?!?!?!?!?! Gastro doc decided not to bother doing it again and he's not going to make Kaelin take the Flagyl. So we wait until the next appointment in Oct. We do have an appointment with the pediatrician next week, so I can ask a ton of questions then...

In the meantime, things were improving and now they are sliding back. We went away for a quick trip and Kaelin didn't want to eat when we were walking around. After she ate (in the hotel room) she didn't want to leave the room. I took her down to the pool a bit later and the first thing she did was find the bathroom. And now that we are home, whenever I ask what she wants for lunch, she says "do we have to go out?" She seems to want to stay in the house all the time...

There were a few times Kaelin woke up in the middle of the night crying from stomach pain -- that hasn't happened recently. However, there have been a couple of times that it's happened in the middle of the day. When we were away, Kaelin bent over, grabbing her stomach and saying "ow, ow, ow, ow..." It was a couple of hours since she ate, so it wasn't hunger pangs. She said she didn't need a bathroom. It was just a pain that came out of nowhere and in a few minutes it was gone, leaving a dull ache.

I was trying to track her pain, asking her to assign a number from a pain chart -- I'm not putting a lot of faith that she is accurately expressing the correct number, however, I just wanted to gauge how the pain progresses or subsides. Every morning she wakes with the pain at level two. After breakfast it goes up to a four or five, then quiets down a little after a few hours. Before lunch it's again a two, but then goes up to a six or seven and recedes to a four/five after a few hours. Dinner brings it up to a nine/ten. (That's the pattern if she eats an adequate diet -- sneak in some food she shouldn't eat and the dial moves to a constant nine.)

Yesterday I gave her pistachios which is the only nut that contains NO fructose. She ate a few, then said it made her stomach "very angry" and rated it as a twelve (on a scale of one through ten). Then I googled pistachios and Crohn's and again for CSID. Turns out they're not so good for either of those disorders.

Lost tests, no idea what works and what doesn't, no plan forward at this moment... Sigh.

Charlie -- I promise that I didn't get even remotely concerned by the comment in that book. I didn't and still don't believe that people die from Crohn's. I just meant how it was the first comment I read directly addressing Crohn's -- and yikes! However, I will admit that what does unnerve me a wee bit is the author's grandson's condition became serious because he refused meds and wouldn't follow the proper diet. So we're not willfully avoiding treatment -- but not following protocol due to being undiagnosed will bring about the same results: getting a little sicker day by day... That is why I'm paranoid -- Kaelin is always on the fringe of things and we take a wait and see attitude. I worry that we ignore things until it gets to a crisis. (And yeah, I do mean paranoid because that hasn't happened with anything yet -- her doctors seem right on top of everything. It is nothing more than my feeling of helplessness because I cannot get to the bottom of the pain!)

Catherine -- I don't know if Kaelin's had the calprotectin fecal test. I got into her test records at Children's and I don't see anything. We ran some stool tests in mid-July and that info isn't posted for some reason, so maybe this test was run. Her lactoferrin tests came out positive, twice. Then gastro doc ran a test for a quantitative measure which sounds like the calprotectin test... Maybe that's why the tests don't agree? Measuring two different things?

I can't even express how much I hate the idea of doing an endoscopy/colonoscopy -- but the ONLY thing that I hate even more is wondering about all these conditions that can only be diagnosed for sure with those tests... Sigh

[Charlie Arnold]

If you read this link to flagyl the side effects can be pretty horendous. One of them is a metaliic taste and it may well be Kaelin was experiencing that last time.
antibiotics.emedtv.com/flagyl/flagyl-side-effects.html

As for the endoscopy, it certainly sounds as though Kaelins whole stomach and bowel is so inflamed that it hurts to have food in it, is she the same with liquid foods. Maybe, horrid as it sounds, the endoscopy will be the best solution, if the system is ulcerated or damaged they will spot it and maybe make a better diagnosis.

[catherine]

FMmom

Going to post on the crohn forum asking whether the tests (calprotection test & lactoferrin test) are same.

[catherine]

FMmon

This is a result I got have a wonderful member Dusty.

They aren't the same as such although they are both used and test for essentially the same thing, that being inflammation of the intestine.

They are both types of protein that bind to white blood cells, so when inflammation is present in the bowel the area involved will experience an increase in white blood cell activity that then translates into increased levels of calprotectin and lactoferrin. That is my take on things take it with a grain a salt!

Either would be suitable as an inflammatory test except if the child young and being breast fed as lactoferrin is naturally present in breast milk.

Looking from an IBD point of view, aside from the run of baseline bloods...

LFT's (Liver Function Tests)
UEC's (Urea, Electrolytes, Creatinine)
FBC (Full Blood Count)

I would also add...

ESR and CRP (general inflammatory markers)
Iron Stores and Folate (may help establish if their are any underlying anaemic issues that aren't apparent with an Hb alone)
B12, for the reasons above plus with Vit D and Lipids to see if any malabsorption may be present.

And lastly, a coeliac test if that has not been done.

Dusty. xxx

[FMmom]

Hey everyone -- thanks for all the replies!

Yikes! I can't believe how long it's been since I've been able to post. My computer was slow and continually crashing whenever I tried to post anything. We eventually discovered that my darling number one daughter downloaded a game that used up almost every bit of memory in my computer. Once that was erased, it no longer takes me twenty minutes to access a website (and no, that is no exaggeration!!!!!! Computers and teenagers -- argh!)

So we saw the pediatrician a couple of weeks ago. She had a long talk with gastro doc the day before and told me that he just doesn't believe Kaelin has Crohn's. Supposedly any infection could cause her lactoferrin to go up (despite everything I read on the Internet that says it is THE determinate factor to separate IBD from IBS.) The quantitative numbers were normal, so at least for now, he doesn't believe it's Crohn's.

The only way to definitively know is to do the colonoscopy/endoscopy and the pediatrician said that gastro doc really, really doesn't want to do it because Kaelin's weight makes anesthesia so much riskier than average. Other than the lactoferrin results, I can't say that I was ever suspicious of Crohn's before, so I'm not surprised that gastro doc is, while not completely ruling it out, not convinced.

I told the pediatrician that I'm still thinking that CSID explains everything. I gave Kaelin some pistachio nuts, which she loves. I read up on it first and several sites said that it is the only nut which has NO fructose, so yay, a nutritious, filling, portable, easy snack. But her stomach hurt a ton and she was so hyper after eating a handful. So I googled pistachios and Crohn's and it was mixed -- it should be fine, but not everyone agrees. Then I googled pistachios and CSID and it's okay with medication. Time and time again, I see foods that Kaelin has problems with (like potatoes and white rice) that are okay -- or great -- for FM but not good at all for CSID.

When I read about CSID testing, I see that where the biospy is done is extremely important -- so I still have my doubts that when Kaelin had biopsies tested for celiac and the sugars would have been taken from that magic area. They weren't looking for CSID, so I'm just not convinced that it's been ruled out.

So, I mentioned that upon further research, I learned that some people just started taking the Sucraid medication and were "diagnosed" that way. (Of course, it's the Sucraid website that advocates taking their product just to see if it makes a difference...) Not at all invasive -- maybe we can just try the medication to see if it makes a difference? She thought that was a great idea and emailed gastro doc. We have a follow-up with the pediatrician at the end of the month and then we see gastro doc mid-October. I won't know the decision until I see one or the other of them...

Gastro doc did a stool pH test and Kaelin has a pH level of 6.8 -- below the "normal" of 7 - 7.5 but above the 6.0 that would indicate CSID. So one more piece of evidence that Kaelin does NOT have CSID. And yet... I just can't help but feel that this is the answer. It explains every symptom she had as a baby; it explains the foods that cause pain; it explains the pancreatic insufficiency that supposedly points to CF but the medication does nothing to help her gain weight. This has to be the answer. Someday I'll accept the medical tests that tell me she doesn't have it -- but the biospy and the pH levels don't convince me yet (the pH levels are an "unreliable" indicator.)

Maybe I should ask the pediatrician about the sucrose breath test. The FM breath test was horrible, it just made Kaelin so sick and hurt so much. For the next week, Kaelin couldn't eat more than two bites without sprinting for the bathroom -- she lost four pounds -- so I'm hesitant to put her through that again. But it is probably the only thing that will convince me...