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4 Yr Coeliac, gluten-free Nearly 12 Months, Still Bloated & Tummy Aches


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#1 CaveMum

 
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Posted 19 November 2013 - 02:19 AM

My son was diagnosed with Coeliac disease December 2012 (TTG 262 and positive biopsy). He was gluten free immediately after. Big improvement very quickly - bloating, tummy aches cleared up and normal, formed bowel motions.

 

Around April, the bloating started to return occasionally. Saw a dietitian who suggested lactose intolerance (never tested him though) and we took him off lactose. Can't say it made an obvious difference to the bloating.

 

In May, tummy aches returned several days in a row, plus more bloating - our family doctor put him on Ranitidine/Zantac. That same week he had his specialist follow up. Specialist took him off Ranitidine, disputed likelihood of lactose intolerance (said that the villi weren't blunted enough). No explanation for the bloating or tummy aches. Specialist did a follow up TTG, which was "normal" (9), also tested for nutrient deficiencies and anaemia - all normal.

 

Hoping that it would eventually solve the problem, and since it wasn't hard, we kept him off lactose.

 

July onwards, the bloating becomes a daily event. I mention it at the Specialist follow up again, and the Specialist makes a note that I said he was bloated, but that's all.

 

September - took him off all dairy, which co-incided with being dry overnight for the first time ever a few days later. I don't know if he actually does have a dairy intolerance, but he seems to be more likely to have a dry night if he has not had dairy. He is already additive and preservative free as we hardly eat any processed food - most is home cooked.

 

Mid October, the tummy aches become daily - worse in the late afternoon and always present when he wakes in the morning. His appetite is still good.

 

Early November, I take him back to the family doctor, with bloating and tummy aches, who again prescribes Ranitidine (Zantac). Has now been on Ranitidine for a few days, but it's not clear whether this is working. And if it is, should a 4 year old really be on Ranitidine???

 

Help! Was it just naive of me to think that Coeliac + gluten-free = healthy, well child?

 

I really did not expect to still be dealing with bloating and tummy aches nearly a year after being gluten-free. I don't know what to do next, it seems like we are being fobbed off.

 

*By the way, our specialist is a general paediatrician who has "an interest" in coeliac disease, as our local health board doesn't have paediatric gastro services. We don't even have access to state funded dietitian. * Our family doctor is a gluten believer  -  she will recommend gluten-free diets to non-coeliacs. I'm just not very confident in her management of our child coeliac.


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DS 1: TTG 262, DGP 170 in June 2012. Eventually diagnosed coeliac by biopsy Dec 2012 (aged 3 yrs 9 months).

Heart breaking that we kept him on gluten all that time. If I had to do it again, I would not agree to continue feeding him gluten for 6 months just so that the "gold standard" for diagnosis could be met.

DS 2: HLA - DQ8 gene. 

Gluten free, as I am not willing to risk his health by allowing him to become coeliac.  


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#2 shadowicewolf

 
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Posted 19 November 2013 - 05:51 AM

A few ideas:

 

Soy intolerance

Corn intolerance

Cross contamination somewhere

 

edited to add more:

 

He could have issues with rice, quinoa or even gluten free oats.

 

The best bet at the moment would be to record everything he eats in a food journal to see if there is a connection.


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#3 CaveMum

 
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Posted 19 November 2013 - 01:50 PM

A few ideas:

 

Soy intolerance

Corn intolerance

Cross contamination somewhere

 

edited to add more:

 

He could have issues with rice, quinoa or even gluten free oats.

 

The best bet at the moment would be to record everything he eats in a food journal to see if there is a connection.

Thanks for your reply, soy and corn were the next suspects on my list.  It's good to know I am on the right track.  During the week that the tummy aches flared up, my husband did the shopping and got soy milk instead of rice milk.  He is back on rice milk, but the tummy aches are still present.

 

Cross contamination is not likely at home, but I do wonder about kindergarten.  He has become a finger nail biter, and I wonder if he might be picking up gluten somehow from things that other kids touch after they have eaten.  We have holidays coming soon,with six weeks off pre-school and if the symptoms disappear,  that might answer the question.

 

He doesn't have any oats, as they are not recommended for coeliacs where we live.  I have wondered about other grains - but hope it's not that.  It will really put the squeeze on if he can't have rice.  I will get onto systematically keeping a food log.


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DS 1: TTG 262, DGP 170 in June 2012. Eventually diagnosed coeliac by biopsy Dec 2012 (aged 3 yrs 9 months).

Heart breaking that we kept him on gluten all that time. If I had to do it again, I would not agree to continue feeding him gluten for 6 months just so that the "gold standard" for diagnosis could be met.

DS 2: HLA - DQ8 gene. 

Gluten free, as I am not willing to risk his health by allowing him to become coeliac.  





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