Gluten-Intolerance Initial Diagnosis Survival Sheet

by Jeanne on February 24, 2012

Lately, I’ve been asked to help out folks who have recently been diagnosed as gluten-free or have been put on a gluten-free diet for one reason or another. I’ve been meaning to have a post dedicated to this for some time now, so here it is!

NOTE: I am not a medical doctor, so do not take any of this as medical advice. If any of this contradicts what your doctor has said, then double check with him/her before following any of this advice.

Note: Gluten is found in: all forms of wheat (including spelt, kamut, farro, emmer, einkorn, semolina), rye, triticale (a cross between wheat and rye), and barley.  Every single one of these grains contains gluten.  Don’t let anyone try to convince you otherwise.

1. First and foremost: Concentrate on the foods you CAN eat versus the foods you can’t eat.

It’s natural to all of a sudden see the world through a gluten-lens when you’re put on a gluten-free diet. If you’re anything like me at the beginning, all of a sudden it seems like every single food item in your universe contains gluten.

Relax. Truly, when you look seriously at your food world, I can guarantee that a good portion of it is naturally gluten-free.  Most of the real food we eat is actually gluten-free:

Meats, poultry, fish, beans, veggies, fruits, rice, potatoes, dairy, quinoa, buckwheat, corn. These are all naturally gluten-free. You can eat these with abandon (as long as you’re not also sensitive to any of these).

2. Do not eat processed foods.

At least while you’re getting used to this whole thing. Processed foods are where most of the gluten in our diets come from. And by processed I mean: store-bought cakes, cookies, breads, bagels, scones, doughnuts, frozen dinners, ice cream, candy bars, gum, energy bars, fast food, salad dressing, and many of the drinks at Starbucks (yes, it’s awful).

This step will be harder for you if you have relied upon convenience food up to now. If this is the case, then you have a harder job ahead of you. BUT. It’s not an impossible job. It requires you to slow down for a minute and get used to some “real” food.

Also, there are eleventy million sites out there that have information on gluten-free processed food. Go to one of those if you want recommendations on those types of things. But I promise, if you just go simple for awhile, you will be doing yourself a huge favor.

3. Realize that you will probably go through a mourning process about your diagnosis.

Be gentle with yourself. I was diagnosed as gluten-intolerant when I gave birth to my daughter (whom I call “Girlfriend”).  When they told me that her birth is what triggered my gluten intolerance, I spent a good year mulling this over in my mind and playing the horrible mind game of: “if Girlfriend was never born, I wouldn’t be gluten intolerant. If I knew that before I got pregnant, would I have gotten pregnant?” I felt horrible thinking this way, but it was natural for me to do it.  It was very hard for me not to make this comparison.  Also, I felt very sorry for myself and quite angry with the world, and felt deprived every time I encountered yet another thing that I couldn’t eat.  I eventually got through this, but it took awhile. And I’m guessing you will probably be going through your own version of the mourning process, complete with denial, anger, bargaining, etc.

4. Know what’s old information and what’s new information about gluten and gluten-free foods.

Information about where gluten lurks in food is always changing.  For example, we used to think distilled alcohol made from glutinous grains had gluten in it. Therefore, many mustards, vinegars, salad dressings with vinegar, and alcohols like vodka were thought to contain gluten.

We now know that the gluten protein is too big to get through the distillation process and so distilled alcohols are OK. Caveat: unless they have the “mash” added back in. I haven’t experienced this, but I have heard that there are alcohols, etc., where they take the barley, rye, or wheat and add it back to the mix. If this is the case, then it is not gluten-free.

At one point, wheat starch was sometimes added to baking powder in the United States.  This is no longer true.  I haven’t found a single baking powder that contains wheat starch in the US.  There are still several in the UK that contain wheat starch.  Check out my Baking Powder post for a list.

A good place to get up-to-date information is Celiac.com

5. Be aware of other foods you might be reacting to.

It’s very common for newly diagnosed gluten-free folks to react to all sorts of other things—especially dairy. The top 8 allergenic foods are: wheat, dairy, eggs, soy, tree nuts, peanuts, shellfish, and fish. I would add corn to this list.  Your body is used to reacting to things, so you may want to be careful about what you are eating until you’re totally clear what you react to and don’t react to. It’s my understanding that once your system has healed from the gluten damage (by you not eating gluten), you will once again be able to eat many things you might have originally reacted to. So, if you currently react to dairy (or whatever), don’t panic. Just go off of it for awhile until your system has healed.

Also, another controversial grain for gluten intolerant folks is oats.  It turns out that many of us react to them (even the gluten-free ones) because they contain a prolamine (avenin) that is very close in structure to the prolamine that we react to in wheat (gliadin).  Check out my post about oats if you think this might be you.

6. Ask your doctor to test your iron and vitamin D status.

Many, many folks who are gluten intolerant do not absorb nutrients very well. And it is very common for us to be deficient in iron and vitamin D especially. Even once you’re fully gluten-free you might still have problems absorbing these nutrients. I take iron and vitamin D every day and I’m still low on both of these.

7. Don’t cheat.

When I was finally diagnosed with gluten intolerance I was sick and tired of being sick and tired. You couldn’t pay me to eat gluten. I felt too awful when I did. And I had a newborn to take care of, so I couldn’t afford to make myself feel bad on purpose. But, I know many folks who keep cheating. They knowingly eat gluten and make themselves feel bad all over again. Why do this? I don’t get it. I think it ties into #3. But seriously, don’t do it. It really doesn’t help. And you keep doing damage to your body if you do this and then everything doesn’t work well.

Also, if you cheat you will confuse and piss off the people around you.  People want to help, so if they go to the trouble of making something gluten-free for you and then they see you eating gluten, it’s annoying.  It also makes people like me crazy because I have to explain to everyone why I can’t cheat and why you do.  It’s tiring.

8. Read labels–even in things you think can’t possibly have gluten.  Gluten hides in some weird places.  Here are some of them.

-pre-shredded cheese (they usually include a starch as an anti-caking ingredient. Make sure the starch isn’t gluten-containing.  This is why many of us who are gluten intolerant react at Mexican restaurants–many of them use pre-shredded cheese.

-sour cream.  Sometimes gluten is added to make it creamier

-beer: most beer contains barley or wheat.  And beer is fermented, not distilled, so the gluten stays in it.  There are a few gluten-free brands (see below).

-hard cider.  Read labels to make sure you know what ones are gluten-free.

-soy sauce.  Soy sauce contains wheat.  I just does.  There are a couple of brands of gluten-free soy sauce or tamari on the market–look for them (see below).

-TVP (textured Vegetable Protein)

-regular panko bread crumbs: these are made from wheat.  Some people seem to think they are gluten-free–they’re not.

9. I know I told you do avoid processed foods but there are a few commercially available foods that we buy that might help make life a bit easier for you while you adjust (and beyond).

a) Tinkyada pasta. This is my favorite gluten-free pasta. It’s made with brown rice and water. That’s it. It comes in a variety of shapes.  I recommend boiling it for 13 minutes (no longer) and then toss/rinsing it for AT LEAST 2 minutes under HOT water (to wash off the rice starch). Then toss with sauce or olive oil.
b) San-J Gluten-Free Tamari. We use this in place of soy sauce (which has gluten). This also comes in travel packets, which are very helpful when you visit friends or restaurants. Please note that not all tamaris are gluten-free. Please read labels.
c) Pamela’s Gluten-Free Bread mix. This is the best commercially available bread mix on the market and it’s easy to make. Just get yourself a 9 in x 5 in by 3 in loaf pan and start baking.
d) Canyon Bakehouse Bread.  This is our favorite gluten-free bread.
3) Glutino Chocolate Creme Cookies (like Oreos). There are many of this type of gf cookie on the market, but we like these best for a once-in-awhile treat.
f) Glutino GF Pretzels. These come in sticks and twists. We like these for snacks.
g) Red Bridge or Bard’s Tale Beer.  I don’t drink beer, but I do use it in cooking.  These are two of the most commonly available gluten-free beers.  Check out this article on Bon Appetit for more brands to try.

And don’t despair! It gets easier, I promise!

Updated: 10/22/13

What other words of advice do you have for folks who are dealing with a new gluten-intolerance diagnosis?

Image from wordplayblog.com

Share

{ 52 comments… read them below or add one }

Erin June 1, 2014 at 6:56 am

I have been gluten free for just under a month now and it has been an experience for sure! My last visit to the doc he asked me to go on a strictly FODMAP diet for 6 weeks then start adding things back in to find my triggers. So far gluten free has helped some so I’m hoping we can find out what else is happening!

I just wanted to say that I really appreciate people like you who are willing to share the knowledge and wisdom you’ve gained from your own experiences. Without you and others like you I’d be lost. It’s not an easy transition when you are doing it basically on your own.

I like the tip about keeping food that I can eat with me everywhere I go. I’ve found that in meetings, eating out, lunches with friends, traveling, etc…it’s hard to resist if you’re hungry and that’s what’s available. If I have something I can eat in my bag it’s much easier to grab that and not worry about it. Then I don’t have to feel awful later and I still ate something so I’m no longer starving :)

Reply

Jeanne June 16, 2014 at 11:26 am

Erin: I’m very happy to help!

Reply

Kristy K. James May 23, 2014 at 1:03 am

Since making your biscuits (though I used a pre-mixed flour), I have been to your site more than just about any other. Those biscuits are wonderful. Even my family eats them without fussing. I don’t suppose you have a dumpling recipe? :)

Anyway, I just wanted to tell you, this is spot on. Is it sad to say that as of May 4th, except for a few accidents (mistaking my daughter’s croutons for mine, not checking the label on a jar of salsa, etc…), I’ve been gluten-free for a year? And I know because I’ve gone through the grief process. But when gluten makes it hard to breathe for a few days, and you swell up so bad your feet and ankles hurt, it’s incentive to keep it out of your life.

I still find myself annoyed from time to time. For instance, I used to drive 45 minutes – one way – to buy my favorite pizza and cheese bread. For about ten years. They finally built one 10 minutes away and I got to enjoy it for about a year before I realized what was causing the breathing issues.

But I found just making up my mind to do this helped. If I wanted to be healthy, if I wanted to walk in the sand without my life passing before my eyes because I couldn’t get enough air, I just had to do it. No more cheating, no more taking just a bite of the Townhouse cracker. No more. Once you decide there’s no going back, it’s easy to say no. It doesn’t mean it’s anymore pleasant.

Yeah, I still got mad. I resented having to explain to waitstaff at restaurants why it wasn’t okay to just pick the croutons off my salad after I specifically explained why I couldn’t have them in the first place. I got tired of friends and family rolling their eyes when I’d ask what ingredients were in a dish.

I’ve also gotten to the place where I don’t give a rip what anyone thinks. I bring my own foods to gatherings. I’ve found recipes using regular, GF foods to take to reunions and parties. Of course I hate that I can’t have my aunt’s special potatoes, or my sister’s chicken and noodles, but I’m mostly okay with it now.

Just out of curiosity though, how long does it take to get completely past the grief stage? LOL…I’d love to pass my favorite pizza place without my mouth watering for food I can’t ever have again.

Reply

Jeanne May 23, 2014 at 10:09 am

Kristy: I’m not sure you ever thoroughly get rid of the grief–especially for favorite foods from childhood or family recipes. I still grieve for San Francisco sourdough. But, the main way I get past it is to make my own versions of things that taste and feel just like the old ones (I can’t do this with SF Sourdough because I don’t live in SF where the bacteria that makes the flavor is). That seems to be the best way to do it.

Also, if you are experiencing breathing problems when eating wheat, you might have a wheat allergy–which can be very dangerous. I would see a doc and maybe get an Epi-Pen. I have a wheat allergy, as well, and I’ve landed in the ER with anaphylaxis. You don’t want to mess with this.

Reply

Mindy May 18, 2014 at 6:22 am

I have spent he last 15+ years in pain. Headaches, intense joint and random muscle pain, bowel troubles, sinus issues, anxiety and depression that have caused be to withdraw from friends and family, brain fog, forgetfulness, and the tiredness. The words to explain the “chronic fatigue” do not exist. 15+ years sick, tired, in pain, knowing something was wrong.

I have been tested for thyroid, and diabetes… maybe it is CFS or fibromyalgia or auto-immune A-Z. No answers. A couple medical doctors even told me that that was just how mothers felt. (I have 3, currently 16, 14 and 6.) No one mentioned gluten. Not one.

Then last fall I was home sick and happened to catch an episode of Dr. Oz where he was talking about gluten sensitivity. Sounded like me so I started doing a little research. Yep, GF would be worth a try. I have a couple family members with sensory processing disorder and autism and their symptoms improved. Worth a try, right?

It took a while for me to realize this is an all or nothing lifestyle change. I can’t just skip it most times and think that an occasional “slip-up” is fine. But you know something, once I cut it out 100%, once I realized that gluten was not an old friend that I would miss dearly but a mortal enemy who was trying to destroy my life or even take it, once I realized that gluten is my enemy and turned my back on it… I FEEL FANTASTICS FOR THE FIRST TIME IN 16 YEARS! No copays, no coinsurance, no expensive or painful tests, just relief. I no longer feel like I am dying, I am finally living again and it is fantastic.

So when my 16 year old daughter came to me complaining yet again about joint pain, bowel issues and fatigue, and I looked over at my son with his “outbursts of anger” and the dark circles under his eyes, and my 6 year old with her pale face and runny nose it hit me. It isn’t good for any of us. So we are going GF as a family. My husband (who seems ok eating it) is leading the charge.

I love having sites like this to walk me through the basics. I have always loved to cook and to BAKE. Even with the little progress I have made, I am still viewing the grocery store as a terrifying place. I know that this too shall pass!

Reply

Jeanne June 16, 2014 at 11:39 am

Mindy: I know! It’s such a relief to know what is causing the problems. And things will get better–I promise! Happy baking!

Reply

Sailingcvgal May 15, 2014 at 11:34 am

Thanks for your blog! I have been diagnosed with Crohn’s since age 22 and now at 65 have been diagnosed with celiac. It will be a journey and I hope to find many answers here.

Reply

Jeanne June 16, 2014 at 11:40 am

Sailingcvgal: Happy baking!

Reply

JM May 9, 2014 at 9:48 am

Thank you for taking the time to spread to word about gluten intolerance. I struggled for nearly 20 years with being “sick”, but was told it was IBS, acid reflux (really, I don’t produce enough acid) and that it was “in my head”. It finally took a chiropractor in 2006 to tell me it was gluten. Both my boys have it, too, so we are a gluten free house.

I remember those first months. It took about a year to get comfortable and work through the emotions. I have fewer and fewer of putting bread in my mouth before realizing it had gluten. Most people are understanding, if not accommodating. I bring my food with me where every I go.

My parents and sisters try to have something for us to each at family get togethers.

My current challenge is with my sons. They have no reaction, so it is more difficult for them to be as vigilant. Lunches for school are also challenging. They have to bring their lunches, but have no way to heat something up. Also, the school does not allow peanut products, which happens to be a staple of ours. They are both sensitive to nightshades and the younger one cannot tolerate artificial anything. We depend on corn tortilla shells and Maninis bread mix.

In the last 8 years, I have seen an incredible amount of improvement in available products; however, people who think gluten-free is a healthier diet is mistaken. We still can eat sugar and fat and chocolate and….. The consequence, unfortunately, it that being gluten-free is becoming thought of as a fad diet, but for me it is not. I no longer suffer from debilitating depression (D3 deficiency), I can tolerate milk products and I am not constantly feeling sick.

Reply

Jeanne May 9, 2014 at 1:11 pm

JM: I’m so glad to help! One thing: how do you know that your sons are reacting to gluten? Did they take a test? Or did they have symptoms before they went off of gluten? You say that your sons have no reaction, so I’m unclear as to why they are off of gluten (unless they are diagnosed celiac, which can sometimes be asymptomatic).

Reply

JM May 9, 2014 at 1:57 pm

That should be corrected. They actually do have a reaction; they just don’t get sick. They break out in a rash which doesn’t cause any discomfort. My older one has been diagnosed Celiac. The younger one has exact same reactions as my older one when exposed. My younger son has always been on a gluten-free diet except the couple of times he “sneaked” at Grandma’s and came home covered in a rash. My mother makes buns weekly. One day she was outside while my 4 year old was inside (you’d think she would know better having raised 6 kids). Later that evening she called me laughing just after I put him in the bath. She found a bun he had nibbled on just around the outside so it looked like a mushroom. He then put the bun back. That explains the rash, I said. He hasn’t take a bun since, maybe he didn’t like the taste never having had it before, but I understand the enticing aroma that fills the house when she bakes. Torture when she makes caramel rolls.

Reply

Jeanne May 10, 2014 at 7:01 pm

JM: Oh, I see. Yes, that makes sense.

Reply

Talley Sue April 15, 2014 at 6:30 pm

I just wanted to thank you for this:
3. Realize that you will probably go through a mourning process about your diagnosis.

I’m still in the anger/grief/mourning phase. It totally surprised me, how strong it was.

I’ve not just lost the eating of those foods, but the baking of them. I love to bake and have a rep as a good baker, so I’ve lost something there. It’s still hard to give that up.
And I can’t bake without getting some into my system–I inhale, and it coats my lips and the inside of my mouth.

But I will say this–I don’t cheat. Like you, I don’t get it. I have silent celiac, so I don’t even have any symptoms (I’ve accidentally eaten gluten a time or two), and I don’t have any increase in well-being or in feeling good. But I still won’t cheat.
Gluten hurts me. Why would I do that deliberately?

I found cooking to be easy. We always made dinners from scratch. We had to stop using the rice mixes, because they all have gluten. (We’ve found a few that don’t, but they’re not common at all.) But that’s it; otherwise, we’ve always eaten vegetables and meats cooked from scratch, and we don’t cook w/ flour or breadcrumbs. And I never have liked pasta much.
So that was good!

And I’m SO VERY grateful to the people who were diagnosed before me. They’ve done a lot to make it possible for me to eat out at a restaurant, or to purchase pasta, etc.

Reply

Jeanne April 15, 2014 at 9:38 pm

Talley Sue: I’m so glad to be of help. And I agree–the mourning process hits hard and it lasts for quite some time. It’s tough. And I agree–the baking process was one that I missed desperately in the beginning. It is part of me. I’m so glad that it turns out that we don’t have to give up baking!! Hang in there!

Reply

Danni April 10, 2014 at 9:04 pm

Thank you so much for this information. Although I am not gluten intolerant I do think I have a sensitivity to it or wheat. I decided to go gluten free as a health kick and realised after a couple of weeks I was not getting the bad foot cramps that I would get every couple of days. So did a bit of experimenting on myself. Each time I went back onto wheat bread the cramps come back. I am still in the middle of experimenting to see if its just bread or all wheat products or if it is gluten. So my next experiment will be rye bread. If I can eat rye bread without getting cramps its not gluten its just wheat. I hope its just wheat because I love rye bread. AND Dairy also gives me flu like symptoms, where I am continually clearing my throat, which all disappears when I go off all dairy. AND I can’t eat most food with natural sulphur such as onions, garlic cabbage etc. I also have very low levels of Vit. D and Iron. Thank you for letting me have a whinge and also thank you again for your work in bring the information to us.

Reply

Jeanne April 15, 2014 at 9:48 pm

Danni: You’re welcome! I am happy to help. It seems like those of us who are prone to allergies and intolerances are constantly having to figure out what, exactly, it is we are reacting to. Good luck with your experiments! Hang in there!

Reply

Ana April 9, 2014 at 4:36 pm

Hello. I have not been diagnosed with Gluten-Intolerance YET. Based on my own research it all points to at least having a Gluten sensitivity. I am already in mourning and am dreading the decision of being tested; still digesting the idea. I am so depressed because I discovered cake decorating about two years ago and it turns out I’m actually really talented & well that goes hand in hand with baking. To make matters worse we moved to Colorado from California so I am also dealing with high elevation baking. I feel so tired and beaten down. I know its not the end of the world, I just feel so sad and want to get past this and get to the part where I get excited about testing new recipes. Thank your for your blog, it helps to have some direction & thank you for this post. It really helps tremendously. Gonna read it again. :)

Reply

Jeanne April 10, 2014 at 4:35 pm

Ana: I’m glad! Very happy to help!

Reply

Willow December 31, 2013 at 6:22 pm

I’m still in the mourning process… off and on.

I grew up with family members and friends with food allergies, sensitivities, restrictions, and issues in general, so I’m not completely new to all of this.

Currently I have 3 very good friends- #1 is vegan, allergic to wheat, dairy, eggs, pineapple, and now legumes, #2 has no food allergies, sensitivities, or restrictions, and #3 is sensitive to onions, but that’s it. Oh and my husband is allergic to legumes (except soy, peanuts, peas, and green beans) and is sensitive to coconut, almonds, squash-both summer and winter, and the entire cabbage family-broccoli, cauliflower, brussels sprouts, etc.- except raw cabbage. I don’t currently live near my family, but when I go visit and cook, I’ll need to make accommodations for corn, gluten, lactose,peppers, spices, tomatoes, watermelon, sugar and fat restricted diets, on top of what I deal with at home. I’ve known since I was a teen that I’m allergic to pineapple, walnuts, cheese molds, like the rinds on brie (this means bleu cheese is right out, too). Then came catfish (only tried it once, while the others developed over time) when I was 25. This summer, I learned I needed to eliminate white flour, white rice, white potatoes and white sugar from my diet due to PCOS, insulin resistance and an uncomfortably high risk of developing diabetes. I’ve been working on it and doing well. I switched to unrefined sugars like molasses, honey and maple syrup. I replaced refined flours & white rice with whole wheat, brown rice, wild rice, polenta & quinoa, and subbed sweet potatoes for russets… everywhere I could, while still trying to eat and live a normal life. I cheated here and there, primarily only nibbles, and the only thing that really suffered was my weight (or rather the nice weight loss I had going) and sometimes (sorry TMI) my backside, but that was also a side effect of my new prescription. I never really knew whether it was the medicaton or foods that caused certain reactions. Through research, I found I also need to eliminate, or at least restrict, soy and diary. Both are very difficult 1) because soy is in EVERYTHING (no more Best Foods/ Hellman’s mayo), and 2) because I love dairy, it’s filling/satisfying, and it DOESN’T upset my stomach or intestines. For Thanksgiving I even bought a special $5 loaf (thankfully it was on sale!) of bread from the freezer section made with sprouted grains and no preservatives, just so I could have dressing. I didn’t feel like stuffing the bird, so dressing it was!  I mashed 50 pounds of potatoes at our church’s Thanksgiving meal, and only tasted once (I forgot I wasn’t supposed to until after it was down), which is big, because mashed potatos were a favorite of mine! I had everyone else tasting the batches to make sure they were edible.

Ok, so if you lost track, that’s no pineapple, walnuts, cheese molds/rinds, bleu cheeses, catfish (no loss there), white wheat, white rice, and white potatoes, only liquid/syrupy sugars, and not much of them, and as little soy as I can manage. (I’m a sugar addict, but I’m actually doing pretty well except for occasional cravings and the odd binge.) I’m not really worrying about dairy for now.  A couple of weeks after Thanksgiving I learned I’m just plain allergic to wheat…

My husband is being as patient and understanding as he knows how. Friend #1 is supportive, knows my pain(ish), and jokes that I’m as bad off as she is. Friend #3 is kind and supportive, but confused (before my wheat allergy diagnosis, but after the doctor said no more white wheat/white sugar, she made cake for us that was 1/2 wheat, 1/2 oats, & lots of sugar)… And friend #2? … If she’s around she rolls her eyes any time I mention anything about my allergies, reactions, or restrictions. I get the same response when someone else asks me how I lost 40 lbs in 4 months and why I changed my diet. So I get to deal with that, too.

There’s not much left on the menu these days, but I am feeling better. I don’t want to cheat if I know it’s got wheat in it, not even a little. It does make me work on a way to make certain dishes safe for me to eat. One of my husbands’ favorite meals (and one of the easiest to prepare) is pasta. I either find something else to eat those nights, or I sautee some zucchini (which turns his stomach) to have with the pasta sauce. I don’t really miss the pasta (I ate around the noodles in lasagne well into my 20’s), but I do miss preparing just 1 meal for the 2 of us.

This year, I missed out on a lot of foods that only come around at Christmas. Now I’ve started trying to bake again. I tried biscuits a few nights ago, and a quick bread this morning. Neither worked well, but both were still edible.

I’d like to get a few basic recipes down, namely  pancakes/waffles, biscuits, coffee cake/quick bread, cookies, cake, pie crust, and bread, not to mention a good ap flour for breading/thickening, etc. All of which should be relatively easy once I find the right combination of ingredients.

We don’t often have money for grocery shopping (thank God for food banks!) so ordering specialty items online is rare and a huge deal for us. We live in a little backwater town that’s a $90 one way trip to the nearest large city (not in the budget!) with minimal supplies for those of us who can’t eat whatever we’d like. I’m working on figuring out a flour mix that doesn’t have wheat/gluten, beans/soy, white rice, potato, (and possibly corn) and is light on coconut and almonds, and that I can afford and procure the supplies for. I already have corn starch, corn meal, blue corn flour, brown rice flour and tapioca flour. I also have 20oz of unsweetened coconut flakes to be processed into coconut milk/cream and coconut flour. It’s a tall order, but if anyone has ideas, I’d love to hear them. I’m also having some difficulty figuring out the syrupy sugars in baking. How does one make a Dutch apple pie topping or coffee cake crumble without the standard trifecta of butter, flour and sugar?!

So in re-reading this I realize how frustrated I really am, though I put on a good front most days. No more this. No more that. Make accommodations for myself & everyone else (What good is making something to share if people get left out of the sharing!?). Educating many who know little to nothing about food allergies and sensitivities, diabetes, insulin resistance, and PCOS. I feel like my body is betraying me. I take pills (which I hate) every day, and deal with those side effects. I must deal with some people, even diabetics who are frustrated and not understanding, and a best friend who is not being supportive at all. Ehhh… *sigh of disgust*

Reply

Jeanne January 1, 2014 at 6:44 pm

Willow: I totally understand how you feel. We have many other allergies in our family aside from gluten and wheat (including peanuts, soy, almonds, citrus, corn, green beans, and pinto beans, as well as all raw fruits and vegetables). I think the main thing to do right now is to concentrate on what you CAN eat vs. what you can’t eat. And it might be good for right now to concentrate on yourself and your husband–don’t worry too much about what your friends can’t eat. It sounds like you can eat: meat, poultry, some beans, many vegetables, most fruit, corn, brown rice, and other grains such as quinoa and amaranth. That’s a lot of food. And it might be best for right now to just eat as simply as possible while you’re getting used to things and getting your body stabilized–forget about eating processed stuff. The more simply you eat, the better. That’s what we do here, too. Hang in there!

Reply

Delecia November 23, 2013 at 4:21 pm

I first used Pamela’s as my bread source. However, I soon after discoverd Glutino Sandwich bread mix to be the BEST. After removing it from my bread machine or loaf pan (from the oven), I allow it to sit out for several hours covered with a thin towel. Putting it in the frig any sooner would result in a soggy loaf of bread. I even wrap it up before refrigerating it. I use this bread for sandwiches, toast, bread brumbs, croutons,… If making sandwiches, I either slightly warm it up or toast it. If toasting, I bake or broil it on both sides. Otherwise, the bottom of the bread is moist.

Reply

mothers little hleper March 18, 2013 at 12:44 am

Hi Jeanne

I just found your blog and have been trying to go gluten free for 6 months now. My family and friends dont understand so I cheat as I usually dont get anyone to think before they invite me over for a meal. Its been hard, and after cheating I feel awful and have to spend the next week trying to get back to feeling better. I live in Singapore and we have a long way to go before GF foods are on menus in restaurants, so I cook alot. I bring my lunch to work and do my best to avoid gluten but if I have to go out for a meal, I am back to square one! I will be trying your flour mixes so will comment and let you know how they go. Its blogs like yours that help us the newly gluten free. Thank you!

Reply

Jeanne March 18, 2013 at 1:50 pm

Mothers Little Helper: I totally know what you’re going through–hang in there! One bit of advice–don’t cheat. If people don’t provide safe food for you to eat, then don’t eat it. I’m serious. You are doing harm to yourself and it just makes it worse. Also, the more you cheat, the more people think they don’t have to take your needs into consideration. Good luck!

Reply

Erica Blair April 20, 2012 at 9:37 am

This is a wonderful post! I’m passing it on as a reminder to anyone with food sensitivities. It is important to remember the mourning process that does occur. Our relationship to food runs deep, take it one day at a time.

Reply

CherylK March 11, 2012 at 2:55 pm

p.s. Trader Joe’s gluten-free Crispy Crunch Chocolate Chip cookies are scrumptious! I could eat an entire bag all by myself.

Reply

admin March 12, 2012 at 12:04 pm

Cheryl: Thanks for letting me know!

Reply

Ana April 9, 2014 at 4:44 pm

thank you.

Reply

CherylK March 11, 2012 at 2:50 pm

Although I love your blog and how you write, I don’t comment very often. I’m not gluten intolerant so that’s part of it. Deep down inside I think everyone would benefit from a gluten free diet. Getting up the courage to take the plunge is hard, tho.

But this is such a good post with so many great links. I’ve got friends who suffer from gluten intolerance…one newly diagnosed. So I’m forwarding the link to this post to her.

Reply

Jan Andrews March 7, 2012 at 9:47 am

Hi Jeanne,
I was one of your cookbook testers, cooking for my gluten-intolerant husband. Well, as luck would have it, I started having problems in December, following a week of 0ut-to-lunches and lots of gluten filled foods. I’ve been GF since December and am having no more problems, and my Dr. agrees without any testing that it’s a problem. I was a lucky one, having gone through the transition with my husband, but this article is very, very good information for newbies. Wish we’d had it when we started this journey 5 years ago!

Reply

admin March 12, 2012 at 12:16 pm

Jan: Hi! Good to hear from you! And it’s so ironic, isn’t it? I’m so glad that you were able to pinpoint the problem and get going on the road to recovery!

Reply

Linda J-H March 4, 2012 at 9:26 pm

Jeanne – I love your blog and all the information you pass on to us. However, we haven’t seen a photo of girlfriend in a long, long time and I’ll bet she is all grown up now. Any chance you could do a post with her photo? And while you’re at it, maybe add a photo of the girls outside, too. I miss seeing them.

Reply

admin March 5, 2012 at 10:32 am

Linda: LOL! Will post some photos of all of my girls, soon!

Reply

Linda J-H March 6, 2012 at 2:10 pm

Cool!

Reply

Faythe February 28, 2012 at 11:51 am

Great advice and tips. I would like to mention that there are a lot of options available for getting enought Vitamin D, found by doing a search as I am not a physician: Souces of Vitamin D include sunlight. Ten to fifteen minutes in the sun about 3 times a week is usually enough for most people. There are food sources too, like shiitake mushrooms, fish, beef, liver, dairy, and eggs. There are also vegan and vegetarian options such as fortified non dairy products and vitamin supplements.

Reply

Stan Starsky February 28, 2012 at 10:10 am

What I like about your article is that not eating processed foods and monitoring vitamin D is just great advice for anyone….My roommate is gluten intolerant and I will pass this onto him as well.

Reply

admin February 28, 2012 at 10:20 am

Stan: Thanks! I’m so glad it is helpful!

Reply

Eleanor at Nourishing Words February 28, 2012 at 5:26 am

I cheat fairly often and find that it takes two or three days in a row of eating gluten (it’s usually crusty artisan bread…) that I start having symptoms. I get your point about wearing out friends and relatives who try to help us. Maybe that will motivate me to just stick with it. Anyway, I really do feel better. My approach is just whole foods all the way. If I have to read a label, it’s the wrong food for me!

Reply

Linda J-H February 27, 2012 at 8:57 am

Excellent post, Jeanne! I can’t stress enough DO NOT CHEAT! I spent the first year thinking oh, a little of this won’t hurt. Yeah, right. After being true to the gf diet, I can now tell within hours whether I inadvertently ingested gluten. Cheating simply isn’t worth it. You can’t be a little bit gluten intolerant….just like you can’t be a little bit pregnant.

One thing being gluten free has done, is free up my mind to try new recipes, new ingredients. There are a plethora of products now, including gluten free cream of mushroom soup for casseroles, and the taste of the products has improved by leaps and bounds, even in the two years I’ve been working on this lifestyle.

Thanks, Jeanne, for all you have done to lead us in our search for health.

Reply

admin February 27, 2012 at 2:53 pm

Linda: Right? Things are so different now than they were for me when I was diagnosed in 2000. So much more available now! Also, I’m so happy to help!

Reply

Lynn Mann February 25, 2012 at 11:26 am

I have been gluten free for about a year now, I work in the schools as a cook, they make pepperoni rolls and hot rolls,. One day I had eaten pepperoni roll and I ws sick for about a week. It was not worth it. I would really like to find a really good organic gluten free flour mix to make bread like the wheat bread in the store, I try to go organic as much as I can. I am sensitive to sugar and dairy so I go goat milk and goat cheese or almond milk. I am still fighting the sugar craving.

Reply

admin February 25, 2012 at 9:28 pm

Lynn: You can make my mix with organic gluten-free flours :). And I totally get the sugar craving. Me, too!

Reply

Claire February 24, 2012 at 9:07 pm

This is a great post. I found out I was gluten intolerant about two years ago and it was a huge adjustment. At first it was easier to eat foods that do not contain gluten, but I began to miss so much that eventually I tried making my own and gluten free alternatives. I agree that Pamela has a good bread mix. I also think her brownie mix is good for a quick and easy brownie. Her pancake mix is great and even my parents use it and they aren’t gluten intolerant! I really like Bionaturae pasta. It think its consistency is the closest to regular pasta.
I wish I had had known about your website from the beginning. I think your flour mix and recipes and hands down THE BEST! I have had the greatest time baking and sharing with friends and family. I hope you will keep adding new ones! Thank you!!!!

Reply

admin February 24, 2012 at 9:57 pm

Claire: Yay! I’m so glad this site has been helpful for you! And I will keeping adding things!!

Reply

Shannon Brown February 24, 2012 at 7:21 pm

Great post. I wish I’d seen something like this last year when I was diagnosed. Focusing on the foods I could eat helped me get through the mourning process.

Reply

admin February 24, 2012 at 7:31 pm

Shannon: I know, right?

Reply

Shirley @ gfe February 24, 2012 at 7:03 pm

Jeanne, this post is excellent! I just shared it on my gfe page. :-) I love how you were blatantly honest, but yet wrote so simply and briefly. Following these steps will really help folks make the transition to gluten free, Jeanne. Thank you for writing it!

Hugs,
Shirley

Reply

admin February 24, 2012 at 7:21 pm

Aw, thanks Shirley! That means a lot coming from you!!

Reply

Angela February 24, 2012 at 7:02 pm

Thank you so much for this information! I am still a newbee at this and your points really helped, and were right on the dot!
Thanks!

Reply

Paulina J! February 24, 2012 at 6:01 pm

Wonderful advice! I went gluten free on my own and don’t regret it one bit. I have a lot more energy and I’m not starving all day. I’ve lost weight and I’m happier. The only advice I will add is to think outside the box, like eating things for breakfast that you wouldn’t normally eat. For example, one of my favorite breakfasts is boiled eggs with wilted spinach with a splash of balsamic vinegar. I would have never thought of eating this before. Give new things a try, more than one try. At the beginning I hated quinoa, but now I love it.

Reply

admin February 24, 2012 at 7:22 pm

Paulina: Terrific point! Yes, this diagnosis has totally opened up my food world.

Reply

annaphallactic February 24, 2012 at 4:35 pm

I would add this: Don’t be afraid to try new foods and new flavors. Allowing your palate to expand and experimenting with food you might not have tried otherwise can fill the gaps left by gluten in your diet. Many non-Western cuisines have dishes that are naturally gluten-free or easy to prepare that way. I know that helped me tremendously when I first eliminated gluten from my life.

Great post, Jeanne!

Reply

admin February 24, 2012 at 7:22 pm

Anna: Yes, this is very good point!

Reply

Leave a Comment

{ 2 trackbacks }

Previous post:

Next post: