Doing A Scope Despite Negative Bloodwork

[bento]

I have an almost 6 yr old child with recurring diarrhea (sometimes every day for a week, sometimes a week with no problems, sometimes one day and not the next but back again the following..no real pattern). We have tried food diaries, done two trials without milk (no help). He is falling off the growth chart in weight (36 lbs) and BMI (<5th percentile). He is frequently ill. Labwork has revealed nothing helpful, and celiac screen last spring was negative. (He had a normal IgA and IgA TTG was <5 last spring. Everything else has been normal.) He looks pale and unwell and also has a lot of bloating and gas and intermittent vague stomach pain. We've seen a nutritionist and he eats a pretty healthy diet. He is not generally picky and despite what seems like a variable appetite is consuming adequate calories. He's been screened for CF and immune deficiency.

Our new GI doc wants to do and endoscope to look for signs of inflammation and I'm not sure what. When I was reticent she next suggested a gluten trial (if we are sure we have already eliminated milk, which I am). I am completely stumped about which way I want to go. I'm reluctant to poke him any more than he's already been poked, particularly when his celiac screen was negative and this seems a little like a fishing expedition. On the other hand, I am sure something is going on with him that we haven't figured out. If we do a trial and it seems to help, will I need to go back and do the scope? Going forward I know if it is gluten I personally would want the clarification. Also I guess I am still skeptical that it could really be gluten. I can certainly see no direct correlation between gluten consumption and the symptoms, though I do understand that might not be apparent.

What are the chances they find something on the scope that would not have been in any way indicated by the labwork?

thoughts?

(thanks)

[Katrala]

It may or not not be. A gluten-free trial could let you know whether or not gluten is the problem. If you are going to do the scope, then he needs to continue eating gluten.

Have they checked the lower bowel as well?

Have you had a full round of allergy testing?

The good thing about an endoscopy is that it may answer some questions - even if they aren't gluten related. And, yes, there is a chance the bloodwork was a false negative. The bloodwork is typically done to rule out celiac disease and if the bloodwork is positive, then it can't be ruled out and an endoscopy is done to confirm that it is celiac disease.

[beebs]

Both of my kids had negative blood work - but they found things in both, one showed inflammation, the other, ulcers in his esophagus, inflammation, and borderline results for celiac. I would do it personally - I know it seems scary- but both mine were up and around in 30 mins like nothing ever happened, and we wouldn't have found all that stuff if we just relied on bloods. Bloods are notoriously false neg in chilldren as well.

The problem with going gluten free is that if in the future you decide you need an edno for a diagnosis, then you will have to put them on a gluten challenge where they consume gluten for months. The problem with that is that if they do have a problem with gluten - quite often your reactions to eating it become so much worse after not having it for awhile, and they may not be able to tolerate it at all. So you may never get a diagnosis. That doesn't bother lots of people though. So its really up to you.

[mushroom]

Beebs is right - if you want to have the scope done he should have it done now, because if he really is gluten intolerant and you want to do it later, eating gluten for 2-3 months may be very difficult for him (meaning painful). and he would suffer much, much more than he would from doing a scope which is usually more stressful for the parent than for the child He will not remember anything about the scope and probably the only residual will be a mildly sore throat for a day. But before doing that, perhaps you could ask the doctor to run the DGP (deamidated gliadin peptide) test, which is a newer celiac test and better at picking up the disease earlier in childlren. I believe it should be automatically included in all testing of children. Because it is newer doctors have to put in a little more effort to find a lab that can do the test.

Scopes are useful in ruling out other causes for his problems besides celiac. And if you do go ahead with the scope you want to make sure they take at least six biopsy samples because the damaged areas can be quite patchy and not apparent to the doctor when he is doing the scope (they have to be looked at under the microscope). Many doctors do not take enough samples.

Reactions to gluten are often delayed and do not seem to be related to the foods he is eating until you keep a food and symptom journal and start noting a pattern of a reaction, say 12 or 24 hours after ingestion of some particular food. You do not get the immediate reactions that come with allergies.

Now even with the additional testing, it is possible the results will still be negative and yet the problem could still be gluten, because the testing is only about 80% accurate. And in young children they have not had a long period in which to bujild up antibodies and damage to the intestine. So I would recommend that you try the gluten free diet anyway for three months and see if it makes a difference. It can do no harm and it certainly could help.

[bento]

thanks. Clearly we have to do something. I cut back on artificial supplement drinks last week out of frustration..I didn't think they were doing any good and they are terrible on the teeth, and he's lost weight. So apparently those are necessary, which frankly, digestive symptoms aside, I do not think a healthy normal 5 yr old should need pediasure to stay on the weight chart. But I digress.

I was just trying to get a sense for how useful a scope would be at this point in clarifying what might be going on. For instance, in theory he could have IBD but there are no lab results to indicate that (like blood in stool), same goes for celiac - he sure looks like a celiac but his labs are normal, so..?

Ugh.

[mushroom]

  On 1/26/2012 at 6:55 PM, bento said:

thanks. Clearly we have to do something. I cut back on artificial supplement drinks last week out of frustration..I didn't think they were doing any good and they are terrible on the teeth, and he's lost weight. So apparently those are necessary, which frankly, digestive symptoms aside, I do not think a healthy normal 5 yr old should need pediasure to stay on the weight chart. But I digress.

I was just trying to get a sense for how useful a scope would be at this point in clarifying what might be going on. For instance, in theory he could have IBD but there are no lab results to indicate that (like blood in stool), same goes for celiac - he sure looks like a celiac but his labs are normal, so..?

Ugh.

I think I would start with asking the doctor for the DGP test to try to get a positive result. You are right, I think, in believing he should not need Pediasure to maintain weight.

[Cara in Boston]

My 6 year old had weird blood test results. Any test with IgA (even the newer sensitive ones) were all normal. His IgG tests were odd so we continued looking. One GI said he definitely did not have celiac. Another said lets keep looking (since she could not explain the weird IgG results). Sure enough, the biopsy showed extensive celiac damage and he has been gluten free ever since. His current doctor is a celiac specialist and she said many kids test negative but still have it. She also did a scope on my older son, even though all his blood tests were normal. She was concerned about some coloration on his teeth - that was his only symptom. His came back normal, but I'm glad we did it.

Do not do a gluten-free trial if you think you might want further testing.

I would do the scope and plan on doing the GFD when you finish, regardless of the results. Then you will have more information to help you make long term decisions.

It sounded scary at first, but both boys actually had a great time (thank you Children's Hospital) and were up and about within 30 minutes.

Cara

[bento]

Thank you all. We're going ahead with the scope. I guess there is some concern that he could have something else going on (like IBD), since he continues to have GI issues and poor growth. Will post back here eventually to report any findings (or nonfindings) since I find it so helpful to have read what others have experienced.

[Roda]

Youngest son(7) had a positive tTG only but did not do a scope. We regretted it later so we tried to do a gluten challenge for the recommended time with the plans to get it done. He couldn't tolerate it and it only lasted three days he reacted so bad. We consider him diagnosed celiac without it anyway.

My oldest son(11) has always(every year since my diagnosis) had negative bloodwork. I finaly decided to have him scoped because of the lingering symptoms. According to the GI his insides were picture perfect and his biopsy came back normal also. He went gluten free the end of Aug. 2011 and it has been amazing. He did a brief gluten challenge in Dec. to see what results we would get. He did have some minor symptoms but he didn't eat it very long. He has decided he feels better gluten free and wants to remain on the diet. His GI knew of my plans to trial him gluten free regardless of the results. She has even commented that he is doing great and remain gluten free too. She won't diagnose him celiac, but believes he is at least non celiac gluten intolerent.

I personally thinks it's wise to get it done before changing anything in his diet. Good luck with your decision.

[coachof5]

Do the scope. My five year old daughter came back with negative blood tests but still had all the symptoms--no growth (twin sister grew 2 inches that year she didn't grow any), stomach issues, bathroom issues, pale skin, extended belly etc. We took her for the scope and the doctor said that it was a clear case. Since celiac is genetic, her dad and I then got tested. Both of our blood tests were negative but we decided to do the scope anyways. My scope was positive, dad's was negative. My daughter and I went on a gluten free diet immediately. She has been gluten free for 4 years and now she is 1 inch taller than her twin sister and is in the normal growth range of children her age.

Your situation sounds so much like mine. I would do the scope and get a real diagnose.