Advice - Info 15 Mth Old Son

[Hannahsmommylisaw]

Hi This is my first time posting I found this place after trying to do some research any comments one can provide would be greatly appreciated.

I have a 15 mth old son he has been an unhappy guy since very early on we had on reg formula and gentle ease formula every well child visit I would complain how he was a very difficult baby screamed all the time never happy etc - I let it go to the side for 9 mths .. at 6 mths he started developing rashes every few days that would come up like blisters and then go away for a few days then come back) mainly around his eyes ..

At 9 mths we introduced food ... cheerios ... milk and our difficult guy became worse, breakouts, diar etc screaming became worse up 1-2 times a night which appears he is in pain. We pulled dairy out of his diet went to a allergist at 12 mths he tested negative on EVERYTHING. They referred us to a Gastro - they saw its uncontrolllable fits and wouldnt even look no further said something neuro and possibly autism traits (which I had never seen any of the latter since he communicates, has expressions I mean he doesnt like people but that can be normal for this age).

We waited and did the MRI after they wouldnt go any further w/out rulling out something neuro - it was neg - so then our childrens diagnostic ctr got him in another gastro - so for the 2nd time they plan to do celiac testing it was done last wed - it was negative at about 12 mths when we did - I dont know if his ped did the whole realm of celiac testing or just the one.. I read that at his age neg can still come back and he could have it when I read all the symptoms my son is right in there.

We dont know what to do and the doc s arent really helping so I am trying a gluten free diet for 2 weeks to see if improvement can be sited, keeping a log .. any other suggestions? I need to look at the recipes and ideas as I found gluten free stuff but I also have to have dairy free for him too

As far as development we had him eval'd he is a normal 15 mth old in speech and skills with the exception of motor skills - he cant stand on his own or walk (the walking is not yet considered dev delayed) but standing on his own is .. today we will meet with a program to possibly get some help I just feel as though on a good day my child is wonderful those days are rare ..

On another note my husband has had something wrong with him for years with breakouts in episodes and artritus so my ped sends me a link and wouldnt you know it that DH mirrors what he gets and he does have some of the C symptoms and so I am trying to encourage him to do the testing.

Any thoughts suggestions would be aprpeciated I am sleep deprived on most days and want to make this little guy feel better.

Thanks L

[ShayFL]

Your husband should get tested as soon as he can. Full celiac panel and genetic testing. This can give you some clues, but not a definitive dx for your little guy (poor thing).

His tests could come up NEG for a long time as in children under 6 their immune systems are not fully developed and they might not show enough antibodies for a POS result.

You should get tested too.

Personally, I would look at it this way. My baby is sick. I am going to try the gluten free diet. It is a VERY HEALTHY diet and we just might get some answers.

Understand that it can take time for healing. Be patient. And you and your husband get tested. If either (or both) of you have Celiac genes, this can help reinforce your decision. And if either of you are celiac, you should also be on the gluten-free diet.

And it is much easier to have a gluten-free household than a "mixed" anyway.

Striving to be 100% gluten-free is hard, I am not going to lie. But once you get used to it, it gets easier. Now is a great time for you to go gluten-free with your son because you control what he eats. Celiac dx is much harder for a teenager.

For now, try to keep the diet simple: pureed meats, pureed steamed veggies, apple sauce with pureed carrots, mashed sweet potatoes, fruits, eggs, squashes, pumpkin. You could try a little yogurt once he has healed. HUMANS do not NEED grains. So hold off on them as long as you can.

Over time, once he heals, you can introduce a few processed gluten-free items (they have them similar to cheerios). They have a replacement for EVERYTHING gluten-free. But all of that processed stuff is not good for him right now. Well it isnt good for any of us really. But it is especially hard to digest during the healing process.

If you have ANY questions, just ask us. We are happy to help.

You may want to check out The Specific Carbohydrate Diet (SCD) as well. This sounds like it might be perfect for him.

[MarsupialMama]

Just to add to the above comments:

It DOES take time to heal - anywhere from a few months to a year. I would always recommend trying the gluten free diet for at least 3 months. While we saw changes in our daughter's appetite, attitude and sleeping habits in 3 weeks, just now we have started to see improvements in her bloated belly going down, etc. Some heal fast, others slow. It is really an individual thing.

Definitely focus on the fruits and veggies, mashed potatoes, soup, things like that. Pureed is always easier to digest, especially for little ones.

Hang in there!

[mftnchn]

I'd second the suggestion of the SCD. If you go to www.pecanbread.com, this is almost all about kids on this diet and recovering from very similar symptoms. Check out the stories there and see if it connects for you.

SCD is gluten free, but removes other things as well, mainly carbohydrates that can't be broken down by the compromised gut.