Not Convinced By Negative Bloodwork. Help!

[BandEsMom]

I need some advice regarding my son's negative bloodwork diagnosis. After dealing with chronic diarrhea for almost 3 years (he's only 3 1/2) I finally had enough with the write-off explanations (viral, stress, medication, etc.) so I made an appointment to deal with the stomach problems alone. We had just recently heard about Celiac when a friend of mine was diagnosed. I entered my son's symptoms in an online health site and it automatically came back with Celiac. In addition, when I told the doctor everything, he suggested we get the bloodwork without any prompting. When they finally called me back with the results, I was told they were "normal" and there was no sign of Celiac. I am not convinced that this is the end of it and I still have a very strong suspicion that my son either has celiac disease or gluten-intolerance. Some facts...

He has always sort-of self-restricted himself when it came to most breads and crackers. He will eat the hot dog and not the bun, the meat and cheese but not the bread, he will even pick the noodles out of his chicken noodle soup. Could the lack of gluten products in his system have effected the test results? Those kind of foods (breads, crackers, noodles, etc.) seemed to be the only things that really upset his stomach.

He was diagnosed as lactose intolerant about a year and a half ago. I know the difference between the diarrhea created by milk products and this new oily "floaty" diarrhea. Not to mention the fact that whenever he would eat ANY gluten product he would complain of his tummy hurting and then the poop.

He has a vitamin K deficiency despite the amounts of vegetables that he eats. He comes home every day with a new mysterious bruise on his leg or arm.

When the doctor first suggested celiac disease, we automatically started him on a gluten-restricted diet. It has worked wonders. He has not had diarrhea all week, he's in a better mood, and he has not complained of his tummy hurting once.

The doctor seems to be suggesting that he might have simply IBS. I know the freedom with which Docs use this diagnosis when they don't know what it is, because my doc tried to do it to me. The doctor has suggested I pump my 3 1/2 year old full of antacids and anti-diarrheals for the next few weeks and then call him back if that doesn't work. I do not feel comfortable with that.

Am I wrong to suspect that he does indeed have celiac disease and there was just something wrong with the test results? He has the classic symptoms, abdominal pain, oily diarrhea, irritability, Vitamin deficiencies, etc. Additionally, I have heard that celiac disease is extremely common among those with Irish heritage, which we are.

I cannot stand to watch my child suffer miserably again. He would just stare at his food because he wanted to eat so badly but it just upset his tummy too much. I want to demand another blood test, but how long should I wait? Should I put him back on gluten in the meantime?

HELP!!!

Oh, and my other son, his twin brother, doesn't have any overt symptoms, and LOVES his bread (he will pull out the hot dog and just eat the bun!), but he is very skinny and has the distended tummy. They are both in the 35th percentile for weight and height for their age, but I was never concerned by that because I was always small for my age. Should I ask to get his brother tested as well?

[mpeel]

My daughter's blood work was negative also. But, since my dad was diagnosed at 3 years old, I removed all gluten from her diet. In a week she was potty trained and the diarrhea stopped. Since, I have read that under a certain age (3 or 5) the blood work is not extremely accurate. I have decided I do not need a diagnosis. She is thriving, why change that. It is a lot of work. But, she just can't do wheat. Now, her sister has some other symptoms that may be related to celiac. So, she is going gluten-free also. It is harder with her. She is older and in school. But, we are working through it. I have a friend that did not believe it could be celiac with her son. But, he grew three inches the first few months on a gluten-free diet.

Michelle

[Alexolua]

we automatically started him on a gluten-restricted diet. It has worked wonders.

This is pretty much all you need to know. Stick to the gluten free diet. Obviously, it is working. =)

But if you'd like to know for sure if your son has Celiac Disease, you can order some tests from Enterolab.com. They don't do blood testing, but they do, do genetic testing and they check stool for anti-bodies, which seems more accurate than the blood testing. And you can be off gluten to be tested by them. Think up to a year, maybe. They also can test for other food intolerances, like dairy.

I would also request a copy of the blood test results. Whomever is reading it, could be reading it wrong. Or it could be a "high" normal, so they are just calling it normal.

Good luck and hope this helped!

[wendyspi]

My son's bloodwork was also negative (we tested at 14 months), so our doctor did the biopsy which was positive.

[BandEsMom]

Thanks for all the advice, guys!

It was all pretty much what I was thinking, but I just needed some words of wisdom from those who have already been through it.

I looked into ordering the tests from Enterolabs, but my insurance won't pay for it and there's no way I can afford it out of pocket. When I call the doctor back for the followup appointment I'll just ask him about redoing the test or possibly doing the biopsy.

I would definately like to get an official diagnosis. The daycare won't accept it as an actual medical problem without a certified letter from the doctor. They've been really hesitant to help with the diet while he is at school.

[mpeel]

That is awful about your daycare. I guess I am lucky. Whatever I say goes, period. I have a much easier time with strangers. I just tell them she can't have wheat and they go with it. I know celiac is much more than that but I encounter those that don't realize white bread is wheat bread too.

Can you just pack his lunch? Don't let them give him anything that does not come from his bag. This is what I do. Even at the places that participate in government lunches are fine with this.

You may want to arm yourself with documentation as to why a biopsy may be needed. My insurances won't pay for one without positive bloodwork. I do not have $13,000. Even if they would do it, EnteroLabs is cheaper even without insurance coverage because of our deductable.

[sashabetty]

I would definitely want to test both kids if it were me. And thoses symptoms are certainly reason enough to test in my book. Are genetic test covered by your insurance?

My DD has come back *inconclusive* on the blood antibody tests and we are waiting for genetic test results and then we will be considering more testing. Our pediatrician thought that the answer to my DD's chronic diarrhea was to give her Metimucil (sp?) to thicken up her stool, which did work, but what did that prove? Didn't really seem like the long-term solution to me!

It's such a hard choice to put them back on gluten, we have done that and have seen how it affects our DD's moods, but I really was ready pursue testing. I think it's a hard question of priorities, trying to get answers, dealing with challenges from family and schools and doctors, or trying to keep them healthy. Will it be harder to put him back on gluten later if you decide to pursue testing?

I wish you luck and health.

[tarnalberry]

I'd encourage you to get the numeric test results. Some doctors will call the exact same results "inconclusive" or "negative". Big difference! :-)