What Now? Normal Blood Test - But All The Celiacs Symptoms

[MommyofTwins]

My twin 4 year old sons (Feb 17th) had the full panel blood test and everything came back negative for celiacs/gluten intolerance. However, when they eat gluten they have bloated bellies, cramps, and major explosions. Being off gluten, even a couple of days and already they are back to normal. No bloating, no cramps and normal stools.

Should I do anything? Or stick to what I can see as a mom and keep them off gluten.

The blood test was done after the boys had been first off gluten for 3 weeks, then back on it for 10 days. The doctor thought it would be enough time to see appropriate results. I was not sure, although all their symptoms were there.

Anyone have anything similar going on? And if so what are you doing?

thanks,

Eva

[HiDee]

My twin 4 year old sons (Feb 17th) had the full panel blood test and everything came back negative for celiacs/gluten intolerance. However, when they eat gluten they have bloated bellies, cramps, and major explosions. Being off gluten, even a couple of days and already they are back to normal. No bloating, no cramps and normal stools.

Should I do anything? Or stick to what I can see as a mom and keep them off gluten.

The blood test was done after the boys had been first off gluten for 3 weeks, then back on it for 10 days. The doctor thought it would be enough time to see appropriate results. I was not sure, although all their symptoms were there.

Anyone have anything similar going on? And if so what are you doing?

thanks,

Eva

I think blood tests can sometimes give you a "false negative" (as in there may be celiac but the blood test just didn't detect it) because they are not totally accurate especially in young children. They're not even that accurate in adults, I know someone who had several negative blood tests before finally getting a positive but all the while still having symptoms before it came back positive. I think before it is evident in the blood stream the damage from the disease has already gotten pretty bad. Not that I'm a medical professional or anything but I don't see why the doctor can't give you a diagnosis based on their response to the diet. If it's that clear when they're off gluten, why do more tests? Go with your mommy instincts.

[The Kids Folks]

My son (7) also had a negative blood test. We opted for the diet change and did not get the biopsy. He was on various meds to treat his symptoms. He had such a positive response to the diet, no more meds!! no more gas, bloating, chronic C. He also had slow/no growth in height and weight. He is improving in both areas. He is now a truly happy kid and will be the first to tell you that wheat and gluten is evil!

Our daughter (4), was on relux and GERD medications. She did not have a blood test. We also put her on the gluten-free diet and guess what no more medications. She is feeling much better on the diet!

You truly have to go with your mom instincts - we ended up switching peds, b/c she was upset that we would do the diet that she thought was too difficult, but it was totally okay in her mind to keep our kiddos medicated for years!!!

Good luck and follow your instincts - your kids are lucky to have such a caring mom!

[ang1e0251]

Just know there is no test for gluten intolerance. They might not have celiac disease but be intolerant. There is no definate way to know. An endoscopy might prove celiac disease but also could be negative. It's just not a perfect test. In either case, the perscription is the same. gluten-free diet. Do what you as parents feel is best.

[bear6954]

My son also tested (and still does) negative in blood for celiacs. He is DNA positive with DQ2 and a very positive biopsy. He was 2 when diagnosed and had classic symptoms of celiacs.

[Tallforagirl]

The blood test was done after the boys had been first off gluten for 3 weeks, then back on it for 10 days. The doctor thought it would be enough time to see appropriate results. I was not sure, although all their symptoms were there.

I'm not sure that 10 days is long enough for a "gluten challenge". There is debate about how long a challenge should last, but generally it's 4-6 weeks.

It's worth considering asking for a biopsy, just to check everything else is okay. You may well get a diagnosis of celiac disease based on the biopsy results. Even if the biopsy result is negative, there's no reason why you shouldn't place them on a gluten-free diet if it helps.

Children quite frequently experience a "honeymoon period" with lack of celiac disease symptoms in their teens (although you never grow out of the disease), so by pursuing a definitive diagnosis now, you could be doing them a favour later on should they begin to question the need to stay gluten-free.

[2boysmama]

My older son had negative bloodwork too, but tested positive through EnteroLabs, and also stopped having diarrhea, gas, bloating, stomach aches when we took him off gluten.

He was also tested for food allergies, but didn't test positive for soy allergy. Soy milk gave him HORRIBLE diarrhea. According to his allergist, he "couldn't" be allergic to soy since he didn't test positive for it, yet when I took him off soy milk, he improved.

You know gluten makes your child sick, regardless of what the tests say. That's all the "proof" you need.

[MommyofTwins]

Thank you SO much for all your responses. My husband and I know that the kids are better off with a gluten fre diet. No need for "medical" "proof". The boys are totally back to normal stools and everything - life is good.

thanks again

Eva