We're Back - With Nephrotic Syndrome

[Nikki~Nathan&Danielle]

Hi, I haven't posted for a few years. My son was diagnosed with coeliacs 3yrs ago when he was 2.5yrs old and we have pretty much just cruised along like that since then. However, a few weeks back we were admitted to hospital and he was diagnosed with nephrotic syndrome (minimal change).

I'm trying to research as much as I can to see if I can find other triggers for this. A google search led me to this site and members suggesting to go gluten-free. Hmmm, we're already gluten-free, but I'm wondering if inadvertantly glutening him over the years could have caused the NS? does anyone know of any research or links into this? It doesnt' happen often, but I wonder if there are still contaminated sources.

I have eliminated ALL grains in the meantime, no sugar, no processed foods (except baked beans occasionally), no processed meats (bacon, ham etc) - so surely no other means of gluten getting in as well as trying to heal his gut.

He is still on a high-dose prednisolone (50mg a day) and will hopefully start to taper this week when we see the paediatrician on Wednesday (he went into remission really quickly within 4 days but has been on a high dose for 3wks). I'm wondering if there are diet changes I can make while we do the taper to try and ensure that he doesn't relapse. Is dairy a link with coeliacs in some way? I've removed milk drinking, but he still eats hard cheese and probiotic yoghurt. I removed potatos too for a week or so, but his hunger from the steroids is just crazy and it's one easy way for me to provide a satisfying food for him.

Are eggs a source of gluten contamination if the chickens eat wheat based foods (as our chickens do)?

His poops have never looked "normal" even on a gluten-free diet. They no longer contain undigested food, but are still what I would term on the yellow side instead of brown - is this normal? The doctor and our paediatrician don't have a problem with that.

Sorry for the masses of questions, but I'm so lost and going around in circles with all of this and feel that diet is really all *I* can do if that makes sense? fortunately for me, my wee fella is totally cool with me calling the shots of food options.

Thanks.

[Mother of Jibril]

Hi Nikki,

I'm sorry that your little guy is still having problems!

I have read that some peoples' immune systems interpret casein as gluten and overreact, so dairy should be a really good place to start. My son is intolerant to dairy (even goat's milk) and corn. Other common culprits are soy, eggs, and grains in general. In order to tell if casein is a problem you need to eliminate ALL dairy products for a few weeks.

I wouldn't worry about wheat proteins getting into the eggs. If your son is going to school with other kids, is everyone there being careful about mealtimes and craft projects?

[RiceGuy]

The abnormal stools could be a problem, so it's not good that the doctors don't pay any attention to it. Take a look Open Original Shared Link, and Open Original Shared Link, and also do a few searches on it.

I'd agree that dairy should be removed from the diet for a few weeks at least, and probably other highly suspect foods like soy, eggs, corn, nuts, etc. If you have any reasons to suspect potatoes, or nightshades in general, there are other things which you can use just like potato. Try taro root. It is so much like potato, you can fry it, bake it, mash it, and so forth. I think the flavor it actually better than potato, but that's my opinion of course. Other things like sweet potato are good too, along with parsnip, turnip, squashes, and more. Some high-carb snacks include tapioca pudding and rice pudding.

You mentioned that you've removed sugar from his diet. What do you use for a sweetener, if anything? I'd recommend Stevia, as it has quite a glowing track record.

[lbd]

If you are worried about wheat in your chicken feed, you might try feeding them bird seed instead. I started buying 50 lb bags of bird seed for my chickens when I noticed that they were eating everything but the wheat grains in the chicken scratch feed I bought. The bird seed is a little more expensive, but my chickens have the run of the farm and they don't eat that much anyway, especially in the spring through fall. They clean up almost all of the bird seed and what is left the squirrels find very attractive (we have the fattest squirrels around ). I noticed that the chicken feed was very dusty and can't help but think I was inhaling quite a bit of that every time I fed them. The chickens do great on the bird seed which is a combo of corn, sunflower seeds, and millet and other seeds (but no gluten grains).

Laurie

[mommida]

Have you been including oats or millet in the gluten free diet? Like someone said, some Celiacs have a gluten like reaction to non gluten ingredients. Common ingredients for reaction are casien, oats (even the brands considered gluten free) and millet.

From a quick article search, (by no means do I even come close to understanding Nephrotic Syndrome) the list of secondary causes includes auto-immune diseases. A gluten free diet has been reccomended for treatmeant of auto-immune diseases because gluten is poorly digested.

My daughter with diagnosed with "probable" Celiac when she was 17 months and now that she is 6 she has been diagnosed with Eosinophilic Esophagitis. Interesting that our children share a common diagnoses and timeline before developing a second, not proven connected illness.

Our research is going to take us in different directions, but I believe we have the same types of thought and feelings driving us right now. So hang in there and take it one day at a time.

Laura

[MaryJones2]

Hi Nikki - I'm sorry your son is having a difficult time. Dairy can be difficult to digest so you might try removing it for a few weeks and see what happens. There are several dairy replacements made from rice, soy, coconut, and hemp that you can try.

Are eggs a source of gluten contamination if the chickens eat wheat based foods (as our chickens do)?

You do not need to worry about eggs containing gluten. They don't.

[neesee]

I'm sorry to hear of your son's new diagnosis Here's a pretty good article about nephrotic syndrome. Open Original Shared Link

neesee

[RiceGuy]

Have you been including oats or millet in the gluten free diet? Like someone said, some Celiacs have a gluten like reaction to non gluten ingredients. Common ingredients for reaction are casien, oats (even the brands considered gluten free) and millet.

Can you provide a link or two showing millet as common for causing a reaction? I've read millet is one of the least allergenic grains known, and is easy to digest. In fact, it is said to actually be a seed, not a grain.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[Nikki~Nathan&Danielle]

Thanks for all your replies!

OK, so I will start with dairy elimination as of today and will chat to him about the nuts and eggs too. Since tomorrow we're likely to start the taper off the drugs, it would be a good time to see how he reacts to coming off it.

I might reintroduce millet again since he quite likes that and it will be a good replacement for the eggs that he's currently having for breakfast. He hasn't had any oats since being gluten-free.

So should i really expect after 3yrs of a gluten free diet for his poop to be brown if there were no other intolerances?

I will go off and read all the links you've provided for me (and maybe that will answer my above question).

For sweetener, if needed (which isn't often now that i'm making everything from scratch and am not big on baking, esp. now that we are off all grains for now), I'm using honey or stevia.

I'm relieved the eggs aren't a gluten source - also, they don't rely on the pellets for their sole source of food as they free range a lot of the day.

We homeschool, so there is no external source of contamination going on (a plus too now with him being immunosuppressed from the steroids that we can control the environment a bit easier).

Mommida, sorry that you are also going through a secondary diagnosis! I have found this round of food eliminations much easier on my emotions than going gluten-free. Just bad timing that both kids have their joint birthday party (haven't had one for a few years) coming up in less than 3mths...

[Nikki~Nathan&Danielle]

Just a quick update - I had ordered some blood tests from my own doctor after being diagnosed with the nephrotic syndrome (hospital/paed weren't interested in finding the cause of the problem so took it into my own hands) and the nurse just phoned to say he's got an egg allergy!!! And low in Vit D and zinc. There go the eggs.

[mommida]

We are going to manage, no worries.

You can have a non food birthday "cake" if the diet restrictions are hard to manage. The cardboard cake slice shapes are filled with small toys and such and stacked into a full cake shape. I've noticed kids don't really eat much at parties. They would rather play.

[ravenwoodglass]

I am going to add one more possibility into the mix, soy. I had kidney impact from the celiac and when I get soyed I bleed into my urine. I usually have microscopic blood but when soyed or glutened it goes from being unseen by the naked eye to pink pee. If he consumes very much soy it might be something you want to try to restrict also for a bit to see if it helps.

[lonewolf]

I have Minimal Change Disease too, but it's been in remission for 4-1/2 years. I would suggest going dairy, soy and egg free also. When I first went into remission I was off all of these things and have just added eggs back in the past year and eat small amounts of cheese, but still no soy.

My heart goes out to your son - I know how hard it is to deal with being on large doses of prednisone. Hopefully he will stay in remission after he finishes tapering off. You will probably want to keep his diet really strict for a long time afterwards - I would wait at least a couple of years before even trying dairy, soy or eggs.

[Nikki~Nathan&Danielle]

Thanks for your replies.

Now that we are eating entirely whole foods there is no soy in the diet anymore (and I don't buy tofu). So one less thing to worry about in the meantime.

He had no dairy today and no eggs, so we'll stick with this for now and I'll speak to the paediatritian tomorrow about what he thinks (although I've found diet information severly lacking).

Can something like an egg allergy just appear at any age (the nurse said it was a mild allergy)? He's never shown any of the classic allergy symptoms - although over the weekend he did start with a dry cough occasionally, clicked his tongue like he had an itchy throat, and the odd sneezing (not today though...) but no development of a cold or other illness.

[sandejosgirl]

I don't have anything useful to add but a note that Namaste mixes don't contain soy, dairy or eggs. I know that you aren't doing processed foods, but we use the brownie mix and Ever-G egg replacer and applesauce to make a "chocolate cake" for birthdays.