Negative Blood Negative Biopsy. Celiac?

[brigitam]

Hi all, I just thought I'd post an update for anyone who is interested or in a similar situation and searching for answers.. not that I really have any but...

My now 5 year old is very small for his age and has failed to thrive since starting solids. He was born small and had reflux when breastfeeding. He had continual diarrhoea. At 4 it became clear he was not growing like his peers. He had a blood test = negative. He had a endoscopy/ biopsy which was also negative. And allergy blood work= negative. I cried when they told me he was not celiac because it felt like it was the answer. The only thing found was a lot of mucus in the gut and a vitamin d deficiency. And yet he responded really well to a gluten free diet. He started eating, better, less irritable, and stopped bed wetting, etc etc. He has a really well regarded ped who recommended we keep him off wheat only and treat his chronic constipation (which appeared to be constant diarrhoea) with stool softners. He seamed to improve but not completely. So I independently took him off gluten again as well. Instantly, he stopped bedwetting but other than that he was pretty much the same. Until I game him 2 muesli bars the other day to test it out. What I suspected was confirmed. He stopped eating, pooed on the grass because he couldn't make it to the toilet (something he did frequently on gluten) and the next morning vomited everywhere, was continually thirsty (another reaction he has from having wheat/ gluten) and then slept a lot.

It was heartbreaking to be continually told there was nothing wrong with him and for it to be continually implied that I was paranoid for thinking something was wrong. The countless times I heard, "but your not big"... no and I am not underweight and abnormally small either!!

When I was searching for answers a lot of people on this site recommended that I trust my instincts and keep him gluten free. But its hard not to think that the doctor knows best. I am still unsure if he is simply gluten intolerant or celiac but I suppose in the end it really doesn't matter. I would have loved to have had a positive result and not have wasted this past year taking him on and off gluten. I look forward to seeing him grow and fatten and to him no longer being the freakishly small kid at school. Thank you to all who responded to my questions and good luck to anyone reading this searching for answers.

[MacieMay]

Hi there!

My daughter had a NEGATIVE blood, allergy, biopsy and gene testing. Dr. diagnosed her with a gluten-intolerance, due to her positive response to the diet. She'll be two next week. The gluten-intolerance is a real thing and very hard to prove. I can't help but wonder if we kept her on gluten if she would eventually been triggered into a celiac. Go with your mommy instinct, it's almost always right!

[ravenwoodglass]

I'm sorry the doctors couldn't give you conclusive answers but glad that you took the time and effort that was needed to confirm that your little one does have an issue with gluten. Thanks for posting as it will likely be helpful to others that are considering whether to try the diet anyway. Do keep your doctor in the loop and let him know at the next well child visit that you have him gluten free. The doctor should be able to see the positive changes and increase on the growth charts and may be willing to give you a 'this child needs to be gluten free' script if you need it for the school system.

[Kimmik95]

Lots of people have a severe gluten intolerance without having Celiac Disease. If the gluten-free diet works for him - do it! Good for you for following up and following your instincts. Be and advocate for your child and you will always do what's right!

  On 2/21/2011 at 10:35 AM, brigitam said:

Hi all, I just thought I'd post an update for anyone who is interested or in a similar situation and searching for answers.. not that I really have any but...

My now 5 year old is very small for his age and has failed to thrive since starting solids. He was born small and had reflux when breastfeeding. He had continual diarrhoea. At 4 it became clear he was not growing like his peers. He had a blood test = negative. He had a endoscopy/ biopsy which was also negative. And allergy blood work= negative. I cried when they told me he was not celiac because it felt like it was the answer. The only thing found was a lot of mucus in the gut and a vitamin d deficiency. And yet he responded really well to a gluten free diet. He started eating, better, less irritable, and stopped bed wetting, etc etc. He has a really well regarded ped who recommended we keep him off wheat only and treat his chronic constipation (which appeared to be constant diarrhoea) with stool softners. He seamed to improve but not completely. So I independently took him off gluten again as well. Instantly, he stopped bedwetting but other than that he was pretty much the same. Until I game him 2 muesli bars the other day to test it out. What I suspected was confirmed. He stopped eating, pooed on the grass because he couldn't make it to the toilet (something he did frequently on gluten) and the next morning vomited everywhere, was continually thirsty (another reaction he has from having wheat/ gluten) and then slept a lot.

It was heartbreaking to be continually told there was nothing wrong with him and for it to be continually implied that I was paranoid for thinking something was wrong. The countless times I heard, "but your not big"... no and I am not underweight and abnormally small either!!

When I was searching for answers a lot of people on this site recommended that I trust my instincts and keep him gluten free. But its hard not to think that the doctor knows best. I am still unsure if he is simply gluten intolerant or celiac but I suppose in the end it really doesn't matter. I would have loved to have had a positive result and not have wasted this past year taking him on and off gluten. I look forward to seeing him grow and fatten and to him no longer being the freakishly small kid at school. Thank you to all who responded to my questions and good luck to anyone reading this searching for answers.