Confused... 3.5 Years Constipated Now Diarrhea... Please Help!

[sarahelizabeth]

I've been on and off this site over the past 3 years as we've tried to figure out my son's issues... and here I am back again begging for some help!

My 3.5 year old son has had chronic constipation since nearly birth (started at about 6 weeks). He's been on double the adult doses of Miralax since he was 7 months old and still would completely back up. He was diagnosed with dysmotility, reflux, and failure to thrive (more then once actually)... as well as a huge handfull of other things (including autism, global developmental delays, multiple regressions, severe hypotonia, ketotic hypoglycemia, chronic ear infections... tubes x3, probable metabolic disorder, and he had a muscle biopsy done last month to look at mitochondrial disorders). When he was 20 months old our regular pediatrician ran a celiac profile which everything came back normal. Then 3 months ago his GI Dr brought it back up again claiming that blood testing is notoriously inaccurate in children under 6. He contemplated doing biopsies but we decided against it as my son reacted very poorly the last time he was sedated. He suggested we do a gluten free trial for 2 months then reintroduce gluten and remove it again and see what happened. He said he would have suggested the trial regardless of the biopsy results so ultimately it made the most sense to just do the trial.

At the time we started the gluten free trial my child was refusing to eat. He was refluxing so bad that his entire body would stiffen up and he'd arch his back crying. He was constantly having swallowing problems... to the point that he was bringing food back up and having to reswallowing it. He was so constipated that he couldn't poop on his own. The GI said he figured his entire GI track was swollen, reddened, and inflammed based on those symptoms. Oh, and he'd fallen off the growth charts... AGAIN!

When we started the gluten free trial I didn't notice any difference until about 3-4 weeks in... and it was very gradual. We ended up going about 10 weeks (instead of "just" 2 months) because of the holidays and a few other thing going on. He eventually started sleeping less (he had beel sleeping 16+ hours a day) and FINALLY started eating and gaining weight. He was still constipated... but we got his Miralax down to a resonable dose... and he was still refluxing but it was managable on Prevacid. Overall he just seemed like he felt better finally. Is it normal not to notice an immediate difference when going gluten-free... or is that unusual??

Well this Monday we reintroduced gluten and everything went down hill. He's spent the last 5 days crying, tantruming, falling down, and having EXPLOSIVE diarrhea. He's NEVER in his life had diarrhea so I am confused. If gluten caused all the constipation problems all along then how could it be causing diarrhea now when we reintroduced it?? It has me second guessing wondering if he's coming down with a virus or something??

Oh... and his skin is all broken out. Now mind you he's got horrible skin to begin with... terrible KP (worst that either our allergist or dermatologist had ever seen), eczema, and a history of MRSA skin infections. Well since the gluten intro he's got pustules all over his legs again... here's a picture...

What do I do?? Keep him off gluten... or keep trialing to make sure its not an illness??

[mushroom]

It is normal for symptoms to change/worsen after a gluten free trial. Constipation and diarrhea are both symptoms of gluten intolerance.

I am so sorry your son is having so many problems. If I were you I would definitely continue gluten free. It is definitely not going to hurt him and it does take quite a while to notice improvement on a gluten free diet. Many of us continue to have problems one or two years down the road, but we would not go back to gluten; it simply is not an option for most of us.

It must be terribly hard to see him suffering so; keep your doctors informed of his progress (or lack of it) and I hope that you find the right solution for him soon.

[Genna'smom]

Hi

My daughter never had any sypmtoms except she had never slept through the night and when younger would cry and we could not console her. She is now 2 1/2 and in april of 08 she stopped eating and drinking after an ear infection (she had 6 in a row). We spent several weeks in multiple hospitals until someone suggested a biopsy and found she had the early warning signs of celiac disease. We immediately went gluten free and she is doing better but still not there. She only weighs 26 lbs but that is better than the 18 lbs she was in April but she is also on a feeding tube. Also she always was and still has constipation problems and is on Miralax as needed but she does go it is just difficult. The GI DR wants to revisit the gluten this next May when she turns 3 and she how she reacts but we wanted to give her time to start eating again on her own before we do that. No one knows for sure why she stipped eating except she is smart and they wonder if she hurt eating so she just stopped. She is finally eating a little on her own so we are happy.

Good luck to you and if he was better than I would say either opt for the biopsy and my daughter comes out of bad but we justy bring her home right away and she is better. She has been put under 5 times since April of 08 testing for things. PS - her blood work said no and we had allergy testing (105 pricks to the back) and she has no allergies....

Bonnie

[debmom]

I'd definitely keep him off gluten and try removing some other foods like dairy if you haven't already. It took 6 weeks for my daughter's stomach pain to finally subside and almost two years later she still has problems with digestion, but she is much better. I bet it will take months for your son's digestion to improve to a point where he has few problems, but keep with the gluten free diet. My heart goes out to you, since you are traveling the road we've been down. It's not easy, but I'm convinced that gluten is a poison for several in my family and for many others.

[RiceGuy]

I agree that you should keep him gluten-free, and also try cutting out dairy, as well as any possible allergens, like soy, corn, etc.

I hope your child feels better soon, the poor little guy!

[sarahelizabeth]

He's already milk, soy, peanut, and tree nut free do to IgE food allergies. He's got a pretty limited diet... which is part of the reason we dragged our feet on the gluten free trial for so long.

[RiceGuy]

  sarahelizabeth said:

He's already milk, soy, peanut, and tree nut free do to IgE food allergies. He's got a pretty limited diet... which is part of the reason we dragged our feet on the gluten free trial for so long.

OK. Then perhaps coconut milk or rice milk will work for him (rice dream has gluten). There's a product called Open Original Shared Link, which you might try too. Another one is called Open Original Shared Link.

Some things which are great as hot cereals, or in place of rice, are millet, buckwheat, teff, and amaranth.

I'm sure others will offer some good meal ideas you can try.