Questions about what our son's gastro told us...

[SiandAshs Mom]

Hello all.

My 7 y/o son has been struggling with chronic constipation since he started solid foods. He has been on PEG (miralax, restoralax) for a couple years and we have had to continually up the dosage to keep him somewhat regular. His paediatrician tested him for TTG IgA (he was negative) as well as thyroid tests (also negative). 

We were referred to a paediatric gastroenterologist to ensure there was nothing concerning causing the constipation. I myself have been gluten free for approx. 9 months and feel so much better (celiac blood tests were all negative for me too). I asked the gastro if there is a possibility that non-celiac gluten intolerance could be the cause of my little guy's problems. 

She said it definitely could be but she did not recommend a gluten-free trial. She said elimination diets can actually cause a person to become more allergic/sensitive to the food they are eliminating. I had never heard of this before. She said since the 'celiac' intestinal damage isn't occurring, the elimination carries more risk than benefit. Does anyone know of research that states this is true? 

Thanks for your input

[ravenwoodglass]

"She said elimination diets can actually cause a person to become more allergic/sensitive to the food they are eliminating."

When that happens we call it being 'glutened'.  In most cases people don't react to something they haven't eaten in a while for no reason,IMHO.  Can you get a second opinion? In a child so young it can be important to get a diagnosis so they can be kept safe in school, if hospitalized etc.

You're in a tough spot and you have my sympathy. It is hard when our children are having problems.

[SiandAshs Mom]

22 minutes ago, ravenwoodglass said:

When that happens we call it being 'glutened'.  In most cases people don't react to something they haven't eaten in a while for no reason,IMHO. 

Thanks for your input ravenwoodglass. I thought the same thing but she caused me to question that.

In all fairness, she did say that an elimination diet may be a good idea in the future - she just felt that he could be missing out on some vital nutrients while growing if we did an elimination diet now. Also, she suggested that we waited until he was off of the PEG laxative as we wouldn't really know if it was the diet or the PEG that was helping at this point.

I wouldn't wish celiac disease on anyone but it would almost be easier to have a clear-cut diagnosis. He may do much better gluten-free but when you have the medical establishment (and family) against an elimination diet then it becomes pretty much impossible. I don't think our doctor would ever consider referring us to another specialist for a second opinion - in his mind it is not at all diet related so it would be a waste of time and resources. We're in Canada so I can't just get an appointment for him myself. 

Not sure what to do now but I appreciate your help

[Jkta]

My daughter also had constipation issues when she was younger and needed laxatives to help. She is now 9, has both hypothyroidism and most likely celiacs.  She has her endoscopy next Tuesday.  And we are also in Canada.

I found that what she really needed was to drink more water and that really helped her constipation.  It was a puzzle at the beginning as to why she was constipated...she ate all her fruits and veggies, we ate whole grain breads and cereals, she had plenty of fibre in her diet.  In the end, we replaced her fluid intake with more water, less milk and if she had cheese she would need to drink a glass of water because we found the cheese to be constipating.  She has been off laxatives for about 4 years.  I hope that might help you.  

[stephm]

Not quite sure if I can help but my experiences have been somewhat similar. 

I'd been struggling with extremely dry skin/scalp and thought it could be due to fat malabsorption/ my body absorbing it and not using it. So I tried going off gluten for 2-4 weeks and back on it. After I went back on gluten, I started noticing significant differences in my stools (gross, I know, and I'm sorry) - but after eliminating gluten again (~3 weeks in) they would normalize. This also came in addition to a rash that my current PC doctor said might be dh.

So I never had any problems related to digestive before taking out gluten, but now it's a huge change. And after being on gluten for ~2 months, I also start to get constipation, which is odd. So perhaps your son's pediatrician could be onto something, but it is definitely worth getting a second, or third opinion - I'm in Canada too, and with a new PC doctor I've been seeing he's taking my symptoms seriously and has given me a referral to a GI. 

[SiandAshs Mom]

On 11/22/2016 at 0:52 AM, Jkta said:

I found that what she really needed was to drink more water and that really helped her constipation. 

Thanks Jkta. Yes, it always seems like a struggle to get him to drink water! That is definitely something we need to work on - I'm sure it would help. All the best with your daughter - I hope the endoscopy goes well.

[SiandAshs Mom]

On 11/24/2016 at 6:21 PM, stephm said:

Not quite sure if I can help but my experiences have been somewhat similar. 

I'd been struggling with extremely dry skin/scalp and thought it could be due to fat malabsorption/ my body absorbing it and not using it. So I tried going off gluten for 2-4 weeks and back on it. After I went back on gluten, I started noticing significant differences in my stools (gross, I know, and I'm sorry) - but after eliminating gluten again (~3 weeks in) they would normalize. This also came in addition to a rash that my current PC doctor said might be dh.

So I never had any problems related to digestive before taking out gluten, but now it's a huge change. And after being on gluten for ~2 months, I also start to get constipation, which is odd. So perhaps your son's pediatrician could be onto something, but it is definitely worth getting a second, or third opinion - I'm in Canada too, and with a new PC doctor I've been seeing he's taking my symptoms seriously and has given me a referral to a GI. 

Thanks stephm. My son also has extremely dry skin (it flares into full blown eczema at times). He licks his lips when he's nervous and gets a huge angry red rash around his mouth almost instantly - I can tell if he's stressed by the rash around his mouth! Never thought it could be related to fat malabsorption but that makes sense.

Interesting that your digestive symptoms crept in after eliminating gluten... certainly lines up with what our doc told us, doesn't it? I'm thinking we'll maybe try a gluten free diet after we wean him off of the laxative and see what happens. We unfortunately don't have the option of seeing another doctor so we'll be left trying to figure it out on our own. I'm glad you found a doctor that is taking you seriously - I hope the GI you see takes you seriously as well. Best of luck!