Neg Blood Tests, Now What?

[balmerhon]

I posted about a week ago about my son who was tested for Celiac disease due to poor weight gain and persistent diarrhea.

Aside from that, he is fine. He eats (though not loads), he's happy, he's energetic, he sleeps well. He has no gas, bloating, tummy pain or any other symptom of allergy or intolerance.

I have IBS and we do have autoimmune problems in the family. I have also tested negative for Celiac.

His doctor is worried about his BMI - he's below the 5th percentile.

So now that we have negative blood tests, what do we do? My son is going to the University of Maryland which is well-known for it's Celiac care, so I know the right tests are being done. But all the tests aren't in yet and we don't have an appt with the doc until early July for follow up. I spoke to the nurse today and she's the one who told me the results are negative so far.

My son has to be potty trained by September in order to attend preschool but with persistent diarrhea, I haven't even tried this yet.

Any thoughts on what the next step might be? It's driving me crazy that I won't see the doc until July.

[missy'smom]

I haven't followed you story but as long as he's gotten the Celiac panel blood test and biopsy of the small intestine while he's been on gluten, then he's had all the tests that he needs to be on gluten for. The other tesing options are allergy(skin and/or blood) which look for a different kind of reaction but have been helpful for some of us as wheat has turned up there and the other would be stool testing through Enterolab, which you don't have to be on gluten to do. So you could just go ahead and put him on a gluten-free diet. If he's had those two tests that I first mentioned, then the results of any others are not going to be affected by him going gluten-free.

[balmerhon]

He has not had a biopsy. Would they still do that even if the blood tests are negative? I know that blood tests are not always accurate, but I'm reluctant to have him go through a biopsy when his symptoms aren't that severe. To be honest, they are more troublesome to me then they are to him at this stage though I certainly appreciate that if he has undiagnosed Celiac, that's not good for long-term health.

[missy'smom]

It may depend on the doctor how they would proceed after a neg. blood test. We did not have the opportunity to do the biopsy, although I would not hesitate to do it. I was undiagnosed for 8 years and so sick I couldn't wait to find a doc. who would do one. A doc. who was not my own pointed me in the right direction, unofficially, and I moved just after that so just tried gluten-free and it was so clear that that was my problem. My son did not display severe symptoms and had a neg, blood test so I knew I would never be able to get an official Dx at this point in his life. You can see my signature to see how we came to decide to take him gluten-free. I often recommend official testing if possible because it is worth it to some for various reasons, to have an official Dx. It's a lifelong commitment and some need that Dx to stick with it and not second guess themselves all the time. Perhaps others with small children can better advise about biopsies in small children and share how they made their decisions. Good luck with your decisions and wish the best of health for your kiddo.

[mamaesq]

Hey Hon! Love the name!

I took my 4 year old to see Dr. Fasano at University of Maryland earlier this year and his bloodwork was fine, so he didn't do anything else. I was diagnosed with celiac in October and my son is itty bitty, so I worry. He has constipation, always complains about tummyaches, gets canker sores, can be irritable, etc.

My son went back to the pediatrician today for a weight check and he's only gained 3 lbs in almost two years. The pediatrician wanted him to weigh 35 lbs today and he's only 33. He said that since his bloodwork was negative, he doesn't think we should scope him, which I agree with at this point, and so he agreed to let me try a gluten free diet with him for a few months. So, tomorrow we start. I think I am going to go down to the Whole Foods in Mt. Washington this weekend since they have a great selection of kid friendly gluten free foods.

Putting myself on a gluten free diet was easy (relatively speaking), this is going to be a challenge!!

Good luck!

[balmerhon]

Hey Hon! Love the name!

I took my 4 year old to see Dr. Fasano at University of Maryland earlier this year and his bloodwork was fine, so he didn't do anything else. I was diagnosed with celiac in October and my son is itty bitty, so I worry. He has constipation, always complains about tummyaches, gets canker sores, can be irritable, etc.

My son went back to the pediatrician today for a weight check and he's only gained 3 lbs in almost two years. The pediatrician wanted him to weigh 35 lbs today and he's only 33. He said that since his bloodwork was negative, he doesn't think we should scope him, which I agree with at this point, and so he agreed to let me try a gluten free diet with him for a few months. So, tomorrow we start. I think I am going to go down to the Whole Foods in Mt. Washington this weekend since they have a great selection of kid friendly gluten free foods.

Putting myself on a gluten free diet was easy (relatively speaking), this is going to be a challenge!!

Good luck!

Thanks so much for your input. It's interesting to know that Dr Fasano didn't pursue it further.

We've decided to try gluten-free for a couple of weeks to see what happens. Unfortunately, I'm already in sticker shock. We went to Whole Foods in Annapolis and I spent $40 for not a lot. On top of that he's not loving the food so far.

I don't know. I'm not sure what's going to happen now. What I do know is the diarrhea is getting old for everyone and if he's not potty trained by Sept, he can't go to preschool.

[raquelita-83]

I'm in the same situation as well. My son (5) just had the blood tests and last week they came back negative. I'm requesting a copy of the test results so I can look at them myself as well. His symptoms are not what I would call "extreme" (constipation, poor weight gain, tummy aches, less than 5th percentile for both height & weight) but they are worrisome to me.

I just found out this weekend that my grandmother is a diagnosed (through blood test & biopsy) celiac. Apparently she was diagnosed a few years ago, but all I remember was that she was sick and had to go on a special diet. Now that I realize that she has Celiac, I am almost certain that is what my son has as well. I really would like a positive DX for my son as he is so young, and I don't want to subject him to a lifetime of a this strict diet if it is not needed.

Should I have him (and myself, because I'm curious) tested to see if he has the gene(s) for Celiac? If he does, I guess I will just assume that he has it. I would really like to have the positive DX as I feel this will help in dealing with his school in the future, and also in convincing his father (we are divorced) that he needs to follow a special diet when he stays with him (currently, he thinks I am crazy about this Celiac thing). I also have an appt with a GI dr in a few weeks, wondering if they will order the biopsy since he has negative blood testing??

[OptimisticMom42]

I don't want to subject him to a lifetime of a this strict diet if it is not needed.

hello raquelita_83,

I don't have any advice about the testing but being divorced I can understand your needing a dr to tell your ex and ex-in-laws not to posion your child.

But what I really wanted to say is that the diet doesn't feel as restrictive as it did at first. I've been gluten/dairy/soy free for several months now and it seems that each week I find some other fun thing I can eat. This week we've been stirring marshmellows into our squash! yum We bought a box of fruity pebbles and a box of cocoa pebbles. I ate gummy worms! The sloppy joes sucked. The taco seasoning and avacado/tomato dip (not sour cream) was awesome.

My #2son anounced to everyone that he really likes olive oil! and #1son said he has learned so much since the brain fog went away and he can think. My ex-MIL is having classes on nutrition (blood type diet, eye reading) at her house for the extended family. My DD found them boring cause she already knew that stuff. She was proud of herself for being ahead of the adults but was respectful and just went off to play outside with her little cousins.

Please don't think of this diet as a chore. It has at times been challeging but so worth the rewards.

[mamaesq]

I forgot about the Whole Foods in Annapolis...I hear it is is absolutely amazing. It is shocking to see the grocery bills go up so much!

We are a couple of days into the diet and he's doing pretty well. He suddenly hates fruit, and now I feel like his diet is even more limited. I think he might be feeling pretty good- he's been in a really great giggly mood, which hasn't happened for a long time.

[LDJofDenver]

One thing you can do is genetic testing. I'm always hearing that blood work on children often has a lot of false negatives (and all the while damage is being done).

Genetic testing will at least show you if you can completely rule it out (or not).

You can do these in-home.

Here's a link to celiac.com article "Ten Facts About Celiac Disease Genetic Testing"

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

It also has links in the article to a couple sources from which to order the tests.

[dadoffiveboys]

My son tested negative to all the testing AND had the endoscopy and was still negative. He had all the same symptoms you described - below the 1th percentile in weight, diagnosed failure to thrive. He never had pain/diarrhea because he just stopped eating when he started to feel sick. Anyhow, he's now been gluten-free for 1-2 years. He gained 15 lbs since then, 6 inches in height, went from the <1th% in weight to the 20% BMI (at least he's now within the lower normal range).

The doctor won't diagnose Celiac unless they have a positive test and/or endoscopy. I was told instead he must be "allergic to gluten" and for him not to eat it. The doctor couldn't deny the positive results of the gluten-free diet. They took approximately 1 month to show the signs but it showed as a big spike in his growth chart.

As a followup I did the genetic testing and I am a DQ4/DQ8 (celiac gene) and my son is DQ5/DQ8 (sensitive/celiac genes). Not sure it told me anything new but you CAN have negative testing and still have gluten intolerance/allergy. The most "proof positive" for a protein allergy is a food elimination diet. No test is guaranteed to be 100% accurate otherwise to diagnose a protein intolerance/allergy.

[balmerhon]

My son tested negative to all the testing AND had the endoscopy and was still negative. He had all the same symptoms you described - below the 1th percentile in weight, diagnosed failure to thrive. He never had pain/diarrhea because he just stopped eating when he started to feel sick. Anyhow, he's now been gluten-free for 1-2 years. He gained 15 lbs since then, 6 inches in height, went from the <1th% in weight to the 20% BMI (at least he's now within the lower normal range).

The doctor won't diagnose Celiac unless they have a positive test and/or endoscopy. I was told instead he must be "allergic to gluten" and for him not to eat it. The doctor couldn't deny the positive results of the gluten-free diet. They took approximately 1 month to show the signs but it showed as a big spike in his growth chart.

As a followup I did the genetic testing and I am a DQ4/DQ8 (celiac gene) and my son is DQ5/DQ8 (sensitive/celiac genes). Not sure it told me anything new but you CAN have negative testing and still have gluten intolerance/allergy. The most "proof positive" for a protein allergy is a food elimination diet. No test is guaranteed to be 100% accurate otherwise to diagnose a protein intolerance/allergy.

Thanks for that info. I'm going to take notes from this thread for when we finally do see the doctor.

Meanwhile, we are on day 6 of a gluten free diet, he's eating well, but if anything, the poop is worse. Is this normal?! Maybe I'll start a separate thread for this as it is worrying me.

[Amyleigh0007]

Meanwhile, we are on day 6 of a gluten free diet, he's eating well, but if anything, the poop is worse. Is this normal?! Maybe I'll start a separate thread for this as it is worrying me.

[Maiko]

I have 2 children that have been diagnosed after gene testing and endo/biopsy. My oldest is waiting for her gene test results.

DH and I have had blood tests but they both came back negative. DH has his enod/biopsy scheduled for July, they won't do anything with me because I'm exepecting baby #4.

I've put the boys on a gluten-free menu but everyone else is eating gluten. I'm somewhat anxious to hear what DH's results will be, I'm curious! Both sets of parent have mild health issues, I'd like to help them if this is the way.

I hope the change in foods will help with trips to the bathroom. My 20 month old is learning what "normal" should be like.