Should we try gluten free?

[Ned]

Hi everyone. 

I have just joined as I'm concerned about my 10 year old son. He isn't diagnosed as coeliac - he had 2 blood tests once as a toddler and once aged about 5, both negative (though I don't have actual results). Ever since he was weaned get has had urgency and his stools are generally of "porridge like" consistency. I don't ever recall him doing a "sausage" poo. His nappies we're pretty mucous too, as I recall. It took him til well over 8 to get full control of his bowels and he often gets episodes of diarrhea. Doctors thought it might be overflow constipation but the treatment didn't really help (and he's never had a hard stool!) 

My sister, my cousin, and two of another cousin's children (same side of the family) are coeliac diagnosed, and my dad is undiagnosed but gluten free. Another sister and my dad are hypothyroid.

My son recently got diagnosed with an autoimmune condition called Itp (immune thrombocytopenic purpura) where the spleen attacks platelets and it causes easy bruising, fatigue etc. This is quite rare in his age group (more common in toddlers and adults) and it is more common in coeliac people (though most people with itp are not coeliac). However, as he has been tested and it was negative the doctor dismissed this link.

My son is tall and well built but tires easily and is pale with dark circles under his eyes. He is average weight for his height. I assume he isn't significantly anaemic as they never mentioned this when he was hospitalised with ITP a couple of months ago.

If it were you, would you give gluten free a go? And if so, how long would he need to avoid gluten before we might see a change in his bowel habits?

 

Thanks so much everyone

Ned x

[cyclinglady]

1 hour ago, Ned said:

Hi everyone. 

I have just joined as I'm concerned about my 10 year old son. He isn't diagnosed as coeliac - he had 2 blood tests once as a toddler and once aged about 5, both negative (though I don't have actual results). Ever since he was weaned get has had urgency and his stools are generally of "porridge like" consistency. I don't ever recall him doing a "sausage" poo. His nappies we're pretty mucous too, as I recall. It took him til well over 8 to get full control of his bowels and he often gets episodes of diarrhea. Doctors thought it might be overflow constipation but the treatment didn't really help (and he's never had a hard stool!) 

My sister, my cousin, and two of another cousin's children (same side of the family) are coeliac diagnosed, and my dad is undiagnosed but gluten free. Another sister and my dad are hypothyroid.

My son recently got diagnosed with an autoimmune condition called Itp (immune thrombocytopenic purpura) where the spleen attacks platelets and it causes easy bruising, fatigue etc. This is quite rare in his age group (more common in toddlers and adults) and it is more common in coeliac people (though most people with itp are not coeliac). However, as he has been tested and it was negative the doctor dismissed this link.

My son is tall and well built but tires easily and is pale with dark circles under his eyes. He is average weight for his height. I assume he isn't significantly anaemic as they never mentioned this when he was hospitalised with ITP a couple of months ago.

If it were you, would you give gluten free a go? And if so, how long would he need to avoid gluten before we might see a change in his bowel habits?

 

Thanks so much everyone

Ned x

While you can trial the diet, I would suggest getting copies of his previous celiac testing.  For a while, the screening TTG was most commonly used, but they realized that it does not catch all celiacs (like me and small children).  I found this out when some of my family members were tested and they were negative.  They told me that only the TTG was ordered (one test that catches most and saves money!).  Some 10% of celiac are seronegative (get another opinion from another doctor!)

Celiac experts recommend screening family members every two to three years or sooner if symptoms warrant.  My kid, who does not have celiac, has tested negative.  She will continue to get tested for the rest of her life.  Of course, she could get a genetic test and that could help her to avoid future antibodies testing.  But, we live in the US and are ruled by insurance.   Even though 35% of the population carries he genes that COULD develop into celiac disease, insurance might refuse to insure her (I have personally rejected for health insurance because I had Hashimoto’s Thyroiditis).  

A firm diagnosis can help him later in life or at school, but as a parent, improving my child’s health could trump everything.   

Oh, it can take months or a year for symptoms to improve on the gluten free diet as the learning curve for the diet is steep and there often is collateral damage (e.g. other AI issues, osteoporosis, etc.).  Hard to say as everyone is different.  

[ravenwoodglass]

Before you give the diet a good strict try you should get another full celiac panel done. Just because it was negative 5 years ago doesn't mean it will be now.  That said after all celiac related testing is done a strict trial may be a good idea.

[Jmg]

2 hours ago, Ned said:

If it were you, would you give gluten free a go?

I'm one of those people that tested negative but still have a significant reaction to gluten. So follow the good advice above, but if and when testing is finished do go ahead and trial the gluten-free diet even if the celiac diagnosis is negative. You could find gluten is a problem for your son.

 

2 hours ago, Ned said:

And if so, how long would he need to avoid gluten before we might see a change in his bowel habits?

Your Transatlantic cousins have a Open Original Shared Link for this kind of question...    In truth its impossible to say. I know I noticed a massive difference within 3 days of changing my diet, but there were changes still going on months after I began. You would be well advised to keep a food journal when making any changes to his diet, but don't cut gluten before you're sure there's no more testing taking place. 

Best of luck to you both