How many more times can I be wrong? Now it's gluten and dairy.

[SOC]

How many times with this illness have I said, "At least I don't have that problem" only to find out I was wrong, wrong, wrong?

First it was, "I don't have chronic infections. My GP and a CFS specialist told me so." That one was very wrong. Treatment with antivirals has improved both my and my daughter's condition significantly.

Next was, "I don't have OI. I'm not frequently dizzy and I don't faint." Again, wrong. I don't have obvious severe OI problems, but I do, in fact, have OI. Treatment with fludrocortisone, verapamil, and a lot more fluids has enabled me to be upright more and able to do more.

Then, "We don't need to deal with methylation issues." Again, wrong, although not so badly wrong as on other issues. Genetic testing showed some methylation issues for me, and more for daughter. So now we take some supplements to deal with methylation problems.

The latest is, "We don't have problems with any foods." Last week Dr R told us to try a minimal gluten and dairy diet. Going dairy-free a few months ago cleared up my persistent nasal and ear congestion, which often led to sinus and respiratory infections, so I'm guessing she's on the right track. We'll see if the addition of gluten-freeness helps even more.

If history is any indication, my "We don't have gut issues because we don't have gut symptoms" is another totally wrong conclusion. When summer rolls around and I'm not tutoring, I'm going to try resistant starch just to see if, once again I was wrong, wrong, wrong.

So.... we're venturing into gluten- and dairy-free land for both daughter and I. It's looking a bit tricky since neither of us does the grocery shopping and DH is not 100% bought into the idea of changing diet. He's coped well with all the lifestyle changes this illness has required so far, but he's a good ole Southern boy who doesn't like people messing with his food. Expecting him to cook gluten- and dairy-free may be pushing him a bit too far.

I'm doing better now that I'm back on Valcyte, though, so I'll be doing more cooking and baking. I can also make short trips to the grocery to investigate dairy-free cheeses and such. No, we don't have Whole Foods Groceries or Trader Joe's here in the middle of soybean land, so finding all the gluten- and dairy-free food options is not straight-forward. But we'll figure something out.

 

[Sushi]

@SOC
What big chain grocery stores do you have? Many of the better ones now carry a selection of gluten-free, dairy-free products. And then places like Vitacost now sell a lot of food--though not the refrigerated stuff.

Sushi

 

[minkeygirl]

Iherb has lots of gluten free stuff. So does Amazon which you can get on Subscribe and save. Vitacost too.

 

[SOC]

@SOC
What big chain grocery stores do you have? Many of the better ones now carry a selection of gluten-free, dairy-free products. And then places like Vitacost now sell a lot of food--though not the refrigerated stuff.

Sushi

We have Schnuck's (yes, that's really its name), County Market, Meijer, Walmart. There's a gluten-free aisle at Schnuck's which has some useful items. I also managed to find Earth Balance Buttery Spreads to replace butter. That's working well for us.

So far we haven't found non-dairy cheeses or brown rice tortillas, both of which we'd like. It seems the perishable items are the most difficult to find. We have a small, private, expensive health foods grocery, so that will be my next stop. I'm confident they'll have more vegan options than our local chain groceries, so I'm hoping to find the cheeses and maybe a few other less common items there.

 

[minkeygirl]

I love Earth Balance. It's hard to find the soy free. Only one place here that I know of and I can't get there.

 

[alex3619]

I did a year of dairy and wheat free to no benefit a couple of decades back ... also no coffee, etc. The worst was no chocolate for a year, and then finding I no longer like chocolate when I started eating such things again. I have had some testing, and never had an association of wheat or dairy with gut issues.

Yet this last year I have some kind of new inflammatory process. Its causing massive serum ferritin. My nerves are on fire, like burning feet syndrome but absolutely everywhere, even my scalp, though it waxes and wanes. Some time back I got a new brand of pasta from my shopper. I ate it twice. Both times I had a massive flair-up of my inflammatory nerve problem. I am currently exploring just how many products are made from rice - rice cakes, rice crackers, and of course the main carb in my diet, rice.

Wheat products causing issues may not be just from gluten, and they may be other than gut related. Recently gluten was implicated in depression for example.

 

[Misfit Toy]

Going gluten free has been easy. I miss pizza with wheat and some things gluten, but going dairy free has been so difficult. I miss cheeses and butter, but soy free "earth balance" is Delish.

I had milk yesterday in a coconut chocolate egg and I've been in bed all day. The longer I've been ill, the more things I can't tolerate. Just 2 years ago, I could eat cheese and be fine.

So strange. Wondering if dysbiosis is causing this.

 

[Ema]

I started gluten free at the beginning of the year. I'm also low carb so that has made it a bit harder too. It does seem to have improved my thyroid and blood sugar labs though only time will tell if that change is to stay.

I second the Amazon recommendation. I've bought quite a few gluten free mixes/bread crumbs/etc there.

Also, I buy pizza from the regular pizza place down the road, scrape it off the crust and put the toppings into stuffed mushrooms I broil in the oven. It's pretty good and makes up a little bit for no pizza.

 

[maddietod]

My favorites, from Amazon and Vitacost:

Tinkyada Brown Rice Pasta
Any products from Schar, including their bread mix
Glutino

Rudy's and Udi's breads taste like wheat bread. Your health food store might carry them. Rudy's is a better buy if the price is the same, as it's a lot heavier. Expect to pay $5-$6 for a loaf.

You can buy pizza crust mixes and pre-made crusts, but they're nothing like normal pizza crust. So if the crust is your favorite part, don't bother.

Avoid Ener-G breads; they taste like cardboard

I haven't found a good cheese. I've spent a lot of money looking.

 

[Sushi]

So Delicious coconut milk yogurt, ice "creme" and other products are really good.

 

[minkeygirl]

Lots of places have stuff made from rice. Iherb has tons of them but I can't eat rice because it really constipates me. Again I love Amazon Subscribe and Save.

@Misfit Toy I love the soy free Earth Balance. Trader Joe's only has the regular kind. Even Safeway has the regular kind but I try to keep my soy intake down.

 

[vamah]

I found brown rice tortillas at Trader Joes. Don't know if you have any of those. I also found a lot of stuff on Amazon and Vitacost. The Red Mill bread mix makes a gluten free bread that tastes like the real thing. I also bought a pizza crust mix, but haven't tried it yet.

I've only been gluten free for a few weeks. Its something I never thought I would do because I LOVE bread, pasta, pizza. I'm not sure if it is helping me yet but, strangely, I don't miss it very much. The only time I felt that yearning was when my family ordered pizza the other day. I heard there is a pizza chain that does gluten free crust -- have to find that.

I expected to be doing seperate gluten free things for me because I didn't feel it was fair to my family to make them change how they eat, but really they didn't even notice when I made gluten free pasta instead of the usual kind. If you take advantage of the internet you can find a lot of taste alike gluten free stuff.

 

[minkeygirl]

Someone I think makes a rice pizza dough. Papa johns or dominos? Some chain.

Dr McDougals tortilla soup is gluten free. Not great but not horrid. Also Nile Spice soups

 

[Sushi]

Someone I think makes a rice pizza dough. Papa johns or dominos? Some chain.

Dr McDougals tortilla soup is gluten free. Not great but not horrid. Also Nile Spice soups

Amy's makes a gluten free, dairy free pizza.

Sushi

 

[minkeygirl]

Not frozen @Sushi. Fresh pizza from a chain. I can't eat rice.

 

[SOC]

I did a year of dairy and wheat free to no benefit a couple of decades back ... also no coffee, etc. The worst was no chocolate for a year, and then finding I no longer like chocolate when I started eating such things again. I have had some testing, and never had an association of wheat or dairy with gut issues.

Yet this last year I have some kind of new inflammatory process. Its causing massive serum ferritin. My nerves are on fire, like burning feet syndrome but absolutely everywhere, even my scalp, though it waxes and wanes. Some time back I got a new brand of pasta from my shopper. I ate it twice. Both times I had a massive flair-up of my inflammatory nerve problem. I am currently exploring just how many products are made from rice - rice cakes, rice crackers, and of course the main carb in my diet, rice.

Wheat products causing issues may not be just from gluten, and they may be other than gut related. Recently gluten was implicated in depression for example.

We may find no big benefit, either. We'll just have to see. I'm thinking that if we're having a problem it's that gluten or dairy are increasing inflammation for some reason. That doesn't have to be gut-related, of course. Daughter had a milk protein allergy as an infant, but they told us she'd outgrown it. Maybe not. So many maybes here.

 

[Misfit Toy]

Pizzeria Uno has gluten free pizza but uses dairy.

@minkeygirl ,,,,We have a grocery store here called Giant or Wegman's and they have soy free Earth Balance. Also, health food stores have it.

 

[brenda]

Gluten free foods are just junk food, not real food and cannot build health. Best to 'eat out of the garden' if one wants to heal.

 

[minkeygirl]

@Misfit Toy I know where I can get it I just can't get there.

 

[minkeygirl]

@brenda. I have ibs. If I eat fruits and veggies on their own I cramp horribly. I have to have some soluble fiber aka carb in me first to lessen the cramping.

There is no one diet or way to eat for everyone.