Do I persist with DS' elimination diet? Or give up?
 

I need advice or encouragement or something... i don't even know:shrug3

DS who is 5 has had immune system issues his whole life, nothing serious... just sick more often or takes longer to kick the cold the whole family gets etc... recently I noticed that his tonsils are severely swollen, to the point that his airway was becoming obstructed when he slept on his back.

So, I removed dairy from his diet and that brought the tonsils down significantly. We let him have icecream once and he had an almost immediate case of explosive diarrhea...

Even though his issues have lessened a lot, and I know dairy is off limits, I wonder if there's more to address. His tonsils are still pretty red, his lymphs seem swollen all the time and his stool is still really loose.

So, I attempted to eliminate gluten. I am gluten free so I thought it would be easy... NOT SO!!! We have gone to two bday parties where I caved and let him have cake (dairy free), also MIL has an unhealthy relationship with food and cannot hang out with us without involving food.... eating out with us at our old favorites. She knows the dairy thing is serious. She knows we also cut gluten. But she just can't stop. In one sentence she can acknowledge his diet and then invite us to go get pizza!!! :doh:mad

I just feel like giving up on the whole gluten thing... he is otherwise totally happy and seemingly healthy. Do I ignore his stool issues? And the swollen tonsils? Could that even be a gluten thing, or something else?
The sleep apnea is under control as long as we stay off dairy.

Also, if I push through with this, how do we deal with the eating out thing with MIL... do I just always pack extra delicious food for him so he's not always missing out?

Re: Do I persist with DS' elimination diet? Or give up?
 

I would keep going. If he is reacting it is likely to get worse, not better. :hugheart

We can't have milk or gluten and try to eat mostly grain free. I make my own cupcakes or other treats to send with my daughter for birthday parties or other occasions where there will be food she can't eat. It's no fun.

Re: Do I persist with DS' elimination diet? Or give up?
 

I wouldn't ignore those symptoms. Do you have access to a pediatric GI dr? They may have some specific suggestions for food to try or ways to diagnose the issue. Have you noticed a difference off of gluten? What about soy since soy is similar to dairy? How carefully have you gone dairy free? If something has the ever nebulous "spices" or "natural flavors" and doesn't otherwise state that the food is dairy free, does he eat it? We have only been dealing with food issues since ds2 was born. How hard for you both!

I'm so sorry about the eating out thing. I would either pack extra delicious food or steer your MIL to places where it is easy to order something dairy free that your son likes. My ds2 has a lot of food issues, and we have found chipotle to be pretty good. I also google any restaurant we are considering to find what others have said about their food and the information the restaurant provides about allergens.

ETA: If our family is eating somewhere that doesn't work for ds2 and I (I'm dairy free all the time, but I'm nursing ds2, so allergen free at the moment), we get food for us either on the way there or on the way back so that we are still "eating out" like everyone else.

Re: Do I persist with DS' elimination diet? Or give up?
 

Thank you! Just talking this out is giving me the boost to stick with it! With dairy we are very strict, if there is any doubt we don't eat it. I will stick with the gluten elimination and remove soy too, since that should be easy. (the only soy in the house is this DS' soy milk :p I'll just switch him to some other milk alternative)

I can do it! I just need to not waffle around when we go and do things, we went shopping this afternoon to make sure we've got stuff in the freezer for when MIL brings junk over (like tomorrow)...

Also, I haven't pursued any medical advice beyond our Ped. But he is realllly lax about stuff (which is great for us being intact and not vaxing), so he brushes stuff off sometimes... I might take him back in and ask about further testing

Thanks ladies :heart

Re: Do I persist with DS' elimination diet? Or give up?
 

Soy has been the hardest other than corn here. Gfcf has nothing on either of those. Soy is in most processed foods.

Re: Do I persist with DS' elimination diet? Or give up?
 

You didn't say (I didn't catch?) how long you have been gluten free, but it can take a couple of months to truly get it all out of your system. With my dairy-allergic/sensitive boy (now 9yo), he was dx at 5.5yo and we started eliminating slowly. First cheese sticks, yogurt and regular milk and then other stuff and eventually (maybe even a year or more) all the "natural flavors" foods as well. The point, though, is that the first couple of months when he first went off it and should have felt better, his body did a "dairy dump" and he was sick MORE often (one of his symptoms was vomiting every 4-8 weeks since he was under a year) rather than less. In fact, it took over a year before his system truly started to show signs of being stronger, and now that it's been 4 years, it was only the past year or two that he gets sick *only as often* as his non-allergic little brother. That means three years until his body was in full-strength mode.

It might take longer than you think for the tonsils and swelling to go down. And it may get worse before it gets better.

---------- Post added at 01:26 PM ---------- Previous post was at 01:21 PM ----------

OH, and about eating out. :no Yeah. My mom still doesn't really get it (it's been four years). We're coming up on holidays and they make me nervous every time. Two years ago my mom tried to tell me that her olive oil butter didn't have dairy in it but I knew from the brand name that it did. She finally had my sis get the packaging out of the garbage to prove it. Then at the meal she gave me trouble over telling my son that he couldn't have sweet potatoes (he hates them and had tried them only two months earlier and said yuck) because they were also packaged and most likely made with dairy. Sure enough, middle of the meal, my sister is again instructed to go to the garage and dig out the garbage package to prove it. She's forever suggesting italian restaurants (cheese, cheese and more cheese!) and stuff like that. As was suggested before, since my son is older, I ask him if we can go to ____ restaurant and I can buy him a subway sandwich on the way. He'll then eat the sandwich (on a plate) as his main dish and we will purchase drinks and sides (fruit, fries, whatever) from the restaurant. Sometimes he says no, he'd rather not do that - and we respect it every time. I don't think he knows the disputes between Mom and me about it, and frankly it's not his business. He would think it's his fault for having the allergy. It's my job to make it seem as every-day as possible and deal with it.

Re: Do I persist with DS' elimination diet? Or give up?
 

Thank you for sharing your experience! And this is why I came here for advice :heart I had no idea it could take that long to leave his system! We've only been at it a couple months with a couple set backs in between.. Which starts us all over :( knowing it takes so long and could get worse before it's better is oddly encouraging... :think and gives me fuel to fight harder for him! Thank you so much!


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Re: Do I persist with DS' elimination diet? Or give up?
 

:heart :thumbsup

Re: Do I persist with DS' elimination diet? Or give up?
 

I would keep going, too. As far as eating out with your mom, I would make a list of restaurants that offer GF & DF options that you feel are safe and stick to it. Those restaurants or nothing.

If possible, I would try to get an IgE and IgG panel done. It can be hard to find a doctor to order it since many doctor's think IgG reactions are irrelevant.

Re: Do I persist with DS' elimination diet? Or give up?
 

Good ideas :) we live on an island so our options are limited, but it's also pretty crunchy so they offer choices for special diets at the crunchy places, you know... The places MIL doesn't like lol... Does this mean I get to tell her no more greasy spoon diner?! :yay

Also, what should I know about the iGg test to help argue for getting it done? I'll look up info on it as soon as I get to the computer, thanks :)


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Re: Do I persist with DS' elimination diet? Or give up?
 

I don't know how to present it to a doctor that doesn't believe in it. The textbooks say it's meaningless. We saw a pediatrician that ran a holisitic practice and had seen the wonderful results from giving the test and doing a 60-day elimination of the moderate and high IgG offenders. We had to pay for it out-of-pocket but it was worth it. Many NPDs and DCs offer it, too. If you're not in the US it might be easier or harder to get, I don't know.