mourning thread

[AnneNeville]

I expect that, as I get used to this diagnosis, I'll have a few things to post here.

Today, I am mourning wheat. My doctor suggested I check for wheat, dairy, and soy allergies. Since I had been (sort of for the heck of it) eating gluten free for the last two weeks, it was very obvious last night and today that re-adding wheat was a BAD idea. I never knew that I felt bad because of wheat, because I never ever took a break from eating it before to find out.

The reaction was dramatic enough that I'm cutting short the three day experiment after 12 hours. I can't face eating any more now.

Hubby and I had some grave faces last night as my wheat sensitivity began to sink in. He's a passionate baker of breads, muffins, and cookies. He assures me that there is no way to make a pizza dough as good as his current one without wheat/gluten.

I believe it will be worth giving up wheat to feel better (I felt better the last two weeks than I had in years, and even stopped taking my nightly allegra), but I am really, really going to miss it.

[Poppy]

What were your symptoms Anne?

[AnneNeville]

Nausea, gas, bloating, cramping, diarrhea, runny nose. Last night I had palpitations. Today, I started to get itchy skin, so i took an antihistamine. No rash though.

I had wheat in three meals since the doctor suggested checking for sensitivity, and each time I felt worse. Declaring an early end to this experiment and moving on to dairy.

I had gotten so used to the gastrointestinal stuff. I thought it was triggered by anxiety.

[Joe S.]

My wife does a convention where she cooks for 100 people. Quite a few dishes are vegan, gluten free, or spice free. Gluten free Brownies are one that people rave about. There are a number of various flowers that she uses to cook for special diets. If you look you will find some very good recopies.

[AnneNeville]

I'm already looking for recipes. Hubby will keep baking with gluten and wheat, but perhaps he'll begin experimenting with alternatives.

[KatyB]

I went GF 6 months ago.  I have not noticed any improvement in my symptoms since then, but I have not been brave enough to add it back in as a trial yet!  I definitely have my days when I mourn it.  Miss good pizza and bread.  But--I have gotten used to GF sandwich bread (I like Udi's brand) and have found substitutes for making gravy, etc.  And there are some decent GF pastas, you just have to experiment until you find one you like.
A chef friend of mine makes a pretty good pizza crust that he prebakes (so that it doesn't get soggy), I have asked him for that recipe & will share here if I get it.  King Arthur Flour has great mixes for baked goods (although they are expensive).  I will say that I am probably eating healthier by skipping donuts & other treats, though....

Check out website for Gluten Free Girl, I am sure there are many other good ones as well.

Next up I may need to cut out dairy...and that one will be really really hard for me.   

[SjoGirl]

Oh I am with you. I stopped eating wheat, dairy, corn and soy years ago. I've since added back some corn and a bit of soy, but generally avoid wheat and dairy.

My nose is not running all of the time, I don't feel bloated or gassy all the time, and I'm not constipated as much. FYI there are many GF products on the market now, some quite good. If you have a Trader Joe's nearby they will give you a list of all of their GF products. Amazon is also a good place to look.

I bought a bread maker and made my own GF bread for several years until I decided to cut back on carbs in general. Pamela's makes numerous GF flours which I used. In fact, at church when I made the bread for communion everyone raved about it, GF or not.

Yes, you will mourn, I still do and I occasionally cheat (then regret it). Life and Sjogren's is a series of letting goes, it can get easier if you find good things to fill the void.

[irish]

Tell your hubby not to despair. I baked and cooked gluten free for about 36 years. My hubby was suffering when we got married in 1964 and did not get diagnosed with Celiac disease until 1978. I had to start this new regime back in the day when there was absolutely nothing out there made that was gluten free. I had to read every label there was that entered our house.

I don't know how he did it cause there was no bread for many years and even white rice flour was not talked about. He lived on meat, potatoes, vegetables and my fantastic home made gluten free soups that are not that much different.

There are so many foods out there to buy to fill in and so many candies, etc that are labeled better so we know they are gluten free. Go to www.celiac.com and you will find a myriad of information.

I never baked bread because I did not have a really good bread machine and it just took too much time when I was working. Also, I bought the bread 4 cases at a time from Energee foods and froze it so we always hada bread on hand. I will tell you that a lot of the gluten free goodies are better than the ones with wheat.

Aldies carries a lot of gluten free products and their brownie mix is awesome. My whole family hovers around the pan and is sneaking little pieces throughout the afternoon at the lake. Doesn't even need frosting and is really good with ice cream. Yes, there is gluten free ice cream that is pretty much the same way it has been made for years.

I cook potatoes and mash them for a cream base for my soups and it is soooo good. I also keep some potatoes out to cut up and put in the soup, vegetable, potato soup, creamed corn with ham potatoes green onion, you name it.

I learned to bakes cakes and eventually did not need a recipe as they are pretty much all the same. You just add ingredients to jazz them up like mashed peaches, sour cream, snack pudding packs, creamed cream cheese with sugar, nuts, applesauce, the list goes on and on. Go on line and find the recipes that you both like and go for it.

Sweet rice flour makes good cream sauce with mushrooms, butter, etc to pour over chicken, meatballs, etc. My hubby ate very well. The flours are great also, use almond flour, coconut flour in smaller amounts to add flavor and a different texture to cakes. Also, know that brown rice and sorghum flours have a slightly oily base and can take rancid with overlong shelf life. Also, any of the nut flours are very good but also have oils so don't have a long shelf life.

It took me many years but I have a really great pie crust that I now use for all my pies plus have had some good pizza crust recipes. You can buy gluten free pizzas that many parlors now so can buy wheat one and gluten free one and eat what you want, freeze the rest and have another meal.

My hubby, one son and his son (grandson gluten free at age 5) so the boys and their wives are all gluten free with their cooking when they need to be at holidays. Any questions you can pm me. Also, there are more and more people who are having problems with gluten and I have read that the scientists believe that it has something to do with the way the grains are being raised--chemicals and modified seeds. That does sound like a very good possibility. Changes the cell structure of the grains causing more inflammatory reactions. Irish

[Nymph]

Anne, I have been gluten free for 5 years. I completely understand mourning wheat. Go ahead.

It IS possible to make some lovely GF baked good. GF Artisan Bread in Five Minutes a Day is a good one to start with. It takes a while as it is a relearning process but the challenge of it is fun.

Yes, you will have other things to add to this list. It's good and necessary to mourn.

I'm going into a phase where this disease may take other things from me. I know that I'll have to mourn, lose, and reinvent again. It is hard. There are good parts, but it is hard.

[SabbraCadabra]

I don't miss wheat, but I do miss the convenience of being able to eat a pizza whenever I want. I also have to do research before we eat out anywhere, but that gets a lot easier after a while.

It's gotten to the point where I tried a burger with a GF bun, and it just seemed wrong to me...the bun is just there to mute the meaty flavors! I usually don't bother with gluten substitutes, because they're so expensive, but sometimes I splurge on snacks. Most GF baked goods I've tried have a way better flavor and texture than wheat flour, IMO.

[AnneNeville]

Let's add a little dairy to the mourning thread. The dietary experiment continues, and I react to dairy as well, though not as severely. I suspect it's just lactose intolerance (I've taken lactase sporadically for years trying to consume cheese and yummy milk products). I guess I'll find out from my rheumatologist whether she thinks I need to cut the dairy out completely, or whether I can continue to eat it on occasion.

Next to test: soy. I discovered last night that I couldn't have hubby's signature thick hot chocolate because the chocolate contained soy lecithin. 

Yesterday was rough, not just for food. For the first time, I was very, very angry at the fact that for years I have been sick, and no one found the root cause. I usually have felt anger in my life, so feeling real rage was odd for me. I recognize that I took my family and doctors (from childhood) so seriously that when they told me my tests were normal, I took responsibility for my physical state. For decades, I've been sick, and I have thought I was doing it to myself somehow with my thoughts, or by drinking too much coffee, etc. I am sure I participated in prolonging the situation by not mentioning symptoms to doctors that I thought were imaginary or self-inflicted.

I even expressed my anger to my mother that in my childhood and teens, for years, she would respond to my common complaint that my stomach hurt by asking if I was, in fact, hungry. I apologized after I'd had a nap, and fortunately she seems to be understanding why I would be upset. For the first time, she's figuring out what I've been dealing with.

I am especially grateful that she has spearheaded collecting information and reaching out to other family members who may have similar undiagnosed issues. I hope that my experience can spare some of them (especially those who are pre-teens now) from having the same experience.

Still, all in all, and despite my mourning and the muscle fatigue (prednisone?) and bruising, I feel 15x better now than I did two months ago. I'll take being chronically ill and able to enjoy a few things over being mysteriously crazy and taking pleasure in almost nothing.

[warmwaters]

Here's some good news on removing the wheat - you already have a baker in the family.  There are many mixes for gf breads and desserts these days. If he feels more adventurous, there are also GF baking cooking books.  And there are many GF products in the stores.

I've also had good GF pizza.  There are at least two pizza places near me that offer GF pizza. It's a thin crust style, and you wouldn't know that it wasn't wheat based.

You also have fun exploring some grains you haven't tried before.  I found a lot of brown rice and liquids recipes I liked.

You should mourn, it is a loss.  But there's some ok news - it's not as horrible as it first feels.

[SabbraCadabra]

Yes, baking your own is definitely cheaper.

[Deb 27]

I think many of us can feel your pain, Ann. Sorry you had such a bad reaction when you tried wheat again.  Do you have a good health food store or Whole Foods near you? They have a lot of gluten free stuff in the larger health food stores.
When I went wheat free, I felt a big change in the pain in my hands and feet. I have a lot of food intolerances along with the wheat like dairy, soy, yeast, to name a few. There were 21 foods that I reacted to! Ugh! I have found that I can have small amounts of wheat without much of a reaction now. I still can 't have nightshades or MSG, those seemed to be the worst.

Good luck!!!! Your husband will find some great new recipes for gluten free goodies!

[AnneNeville]

I think my husband is adjusting. He's saying he'll start experimenting with gluten free flour mixes.

I'm finding I am, indeed, lactose intolerant. Not sure whether that means I have to nix dairy for the short (or long) term.

Next test: Soy, which is in everything it seems.

My plan at this point is just to do the "test" diet as recommended by my doctor. If necessary after that, maybe I'll try AIP to see if there are other things giving me trouble.

It is nice not to feel sick to my stomach all the time. I had no idea what "normal" was.