Non-Celiac Gluten Sensitivity

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IslandRose

Cathlete
I had an appointment with my doctor today. Long story short, I've been suffering from several skin conditions (contact dermatitis, urticaria, heat rash, post exercise rash, etc.), GI problems, split corner of the mouth that heals and then comes back, and on and on for the past few months. I've actually have been dealing with these for years, but this year has been my worse and they are all happening at the same time. I asked my mother if I was allergic to gluten or if I had celiac disease and she said I had that test done a gazillion years ago, before it was even trendy and it was negative. So I thought that was the end of it, but my doctor had a list of symptoms for Non-Celiac Gluten Sensitivity (news to me that even existed) and I had most of them. So basically I have to go gluten free now and I am somewhat lost. He said to make the necessary diet changes (and gave me a list of sources so I could read and make the transition), gave me some prescriptions for my allergies, I have to get blood work done to rule out anything else, and I have to see him in about 6 weeks. After that we will know if there are any improvements and if my issues are related to my diet.

In the meantime, I was a little shocked, because I have been eating the same things pretty much all my life. I love my cereals (Kashi cereals are my fave, but the ones I like have gluten), wheat crackers yum I will miss thee, ahhh, so many things I have to give up. Bread, oh no bread, pastries, donuts, cake omg cake. I mean it's not like I eat donuts or cake all the time, but all of a sudden I have to become one of the people that says: "sorry can't have (fill in the blank) unless it's gluten free". I remember telling a friend of mine awhile ago that I could never go gluten free and now the time has come. How do I go gluten free? I eat a lot of naturally gluten free foods, but will have a really hard time giving up bread, crackers, cereals, and the like forever. :( I know my body needs to heal and the best way to start is from the inside. I know there are tons of gluten free products out there. My doctor said not to fall for it. I mean if I'm going to have a cracker or eat cereal it should be gluten free, but he suggested to get my sources from carbs, fiber, and protein from grains, fruits, and veggies. And they should be fresh, not canned. I know all this already and try to do it, but the problem is giving up the other stuff. At least exercise is a good thing, my doctor told me just to change the diet for now. Anybody has gone from eating gluten to gluten free? How did you do? What was your experience? Thanks for your time.
 
I've had a similar experience. Don't panic, it's easy once you get into the swing of things. I believe that we can become less tolerant of gluten as we get older - perhaps that's what's happened to you? (Not trying to imply that you're old ;) I'm mid 40s, and weird things are starting to happen to me!) The good news is that you'll feel better than you have done for ages, and things you didn't even realise were wrong will sort themselves out.

Here's a good place to start
All about Danielle Walker award Winning Blogger and Author | Against All Grain - Delectable paleo recipes to eat & feel great
I'll post some more resources later today.

Best of luck
 
My brother has celiac and I believe I have a sensitivity. So I try really hard to avoid gluten.

I haven't bought these flours yet but you could try baking/cooking your own cakes, cookies, pizza etc. http://www.bobsredmill.com/Gluten-Free

This is the bread my brother orders in bulk and I buy a loaf off of him once in awhile. I really like it a lot especially toasted. It does fall apart easily when not toasted though. I keep it frozen and pull out a slice or 2 when needed. DeLand Bakery Millet Special - Bread

There's a frozen gluten free pizza at our local supermarket that my brother likes, I believe the brand name is Glutino. I haven't tried it yet myself.

I like these crackers. You can probably find them in your supermarket at a better price. Schar Table Crackers Gluten Free, 7.4-Ounce (Pack of 3): Amazon.com: Grocery & Gourmet Food

I eat all kinds of gluten free grains. Such as quinoa, buckwheat, amaranth, millet, teff etc.

There's lots of gluten free cook books on amazon.

HTH!
 
I have been gluten free for close to 15 years, it takes some time but believe me you will feel so much better! I had all the skin symptoms you describe, the GI issues etc.. Once you start to eliminate gluten and feel better you won't miss these foods as much as you think. Gluten free products are so much better tasting than they once were, they have great breads in the freezer sections of most grocery stores, quinoa makes an amazing pasta. If you have a wegmans in your area they have a large selection of gluten free products. It takes some research early on to see which products contain gluten, it is hidden in a lot of products.
If you don't have true "celiac" disease you won't have to be as diligent with staying gluten free, you can experiment with certain foods you love and see how you feel.
Good luck, it really isn't that bad.
Katie
 
Justinef said:
I believe that we can become less tolerant of gluten as we get older - perhaps that's what's happened to you? (Not trying to imply that you're old ;) I'm mid 40s, and weird things are starting to happen to me!)
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:eek: I know exactly what you mean. I'm turning 36 in October and every year after 30 seems like a puzzle because I don't know what else I'm going to get. Good thing is that my generalist is a doctor that eats very clean. He's actually my age and it's like we speak the same language when it comes to health and fitness. About the sensitivity/intolerance he explained it very easily. I thought that I could eat all the gluten I wanted because I tested negative for celiac. He actually used the classic example of people who can eat shellfish and eat it so much that they actually develop an intolerance and can't eat it no longer. Our body has the tendency of creating intolerances, sensitivities, and allergies when we eat toxic things for a long time. I actually know several people that could eat shellfish and developed intolerances, my niece loved cured meats, and hot dogs and ate them several days a week, she developed an intolerance to their preservatives, and can't eat them anymore. He believes that is what happened to me with gluten. I eat so many things with gluten every single day that I made my body sensitive.:confused: Who knew? I learned something new yesterday and it's a good thing I have a few days off for Easter because I have tons of reading to do. Thanks for the recommendations. Anything else you can share let me know. This is a new journey for me.
 
The easiest way is to just eat the things that are naturally gluten-free on their own as opposed to looking for crackers and breads to substitute the substitutions frankly taste dreadful and the consistency isn't there and I don't like the taste at all.

Good sources of carbohydrates include fruits potatoes quinoa rice lentils, beans peas corn.
 
I've been gluten free for awhile now. Never thought I could give up my bread and cookies. I didn't realize how crappy I felt until I gave it all up. Good luck to you, it certainly is not a death sentence.
 
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I'm intrigued by this thread! I'm going to check out my pantry and fridge and check for gluten products and the frequency with which I eat them. I'm noticing weird things too but attributed it to aging....
 
Justinef said:
I believe that we can become less tolerant of gluten as we get older
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Yep, yep, yep! That's absolutely what has happened to me. I used to be able to chow down on multiple bowls of cereal each day (not Frosted Flakes, but the "healthier" whole grain, low sugar cereals). Then all of a sudden I started noticing major abdominal pain, discomfort, and digestive issues. But the thing that really helped me make the connection with the cereals was that I started having trouble sleeping, and I used to have a bowl of cereal as a nighttime snack, so I thought I wasn't sleeping well because I was going to bed on a full stomach. As soon as I stopped eating the nighttime cereal, I could not believe how much better I felt. Not only was I sleeping better, but the tummy pain I had been feeling during the day was gone.

It's been a process. I have shifted to a higher protein, higher fat diet which has helped me avoid gluten-filled carbs. I've also substituted air popped popcorn and bowls of certified gluten-free oatmeal (or quinoa, or millet, etc, which all taste so yummy when sweetened like oatmeal) to replace the cereal. I've never been a big bread eater, but I know there are so many gluten free bread options out there now so you might want to give those a shot.

You're not alone, Island Rose!
 
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Thanks everybody for all the suggestions. Keep them coming.

Yesterday, I had a really tough day. I will be on medrol for 7 days (yep, my allergic reaction is that bad) and I started it yesterday. It is my second time ever using that drug. The first time was about 5 years ago when I had a very bad reaction to a prescription antibiotic. I spent all day in bed because I was very weak. I am feeling better today thankfully, but the doctor told me to stay home since my immune system will be very vulnerable. Good thing I took a few days off. You have given me really good suggestions. I was checking them out yesterday and found some interesting things. :)

I checked my kitchen yesterday and there were a lot of things with gluten, some of them "healthy" like my Kashi cereals, pita bread, organic salted crackers, etc. I was on gluten overload. As soon as this year started I was so busy that I stopped preparing my meals in advance. Especially lunch which I always brought from home. My lunch this year became some sort of wheat bread sandwich (turkey, salmon, tuna) or thin crust veggie pizza (also on wheat) which I was buying from "healthy" places nearby. Add to that my favorite snack of all time which is a bowl of cereal (most of them are not gluten free). My doctor called it like it was. I hope this change makes me feel a lot better. I am allergic or sensitive to many things, including soy, but never thought gluten was going to be in that list since I was told I tested negative for celiac disease. I feel I ate it in excessive amounts and caused this. I guess everything happens for a reason. I will know in a few weeks if this was a good thing. After all the reading I've done about gluten it probably will be.
 
Nanbo said:
I'm intrigued by this thread! I'm going to check out my pantry and fridge and check for gluten products and the frequency with which I eat them. I'm noticing weird things too but attributed it to aging....
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Maybe try it for a month and see if you feel better. The thing with gluten sensitivities is that the "cure" is to get it out of your diet, although I've been reading it is on beauty products as well, but my doctor told me since I do not suffer from CD to start with my diet first and then worry about the other stuff that has gluten or wheat. In your case, if the weird things are getting too weird it is never a bad idea to visit your doctor. I waited too long to see mine. Take care. :)
 
I went through an autoimmune thing last year, I had strange red rashes on my left ear (hot/puffy), my dr. assumed it was bacterial, so I took the antibiotics, put on twenty pounds, then discovered it was sensitivity to cherries and red peppers. Later last year, I developed etopic eczema, which is a result of allergy like sensitivities that don't show up in the blood panels because it doesn't cause an anaphylactic style reaction, there are no protein markers to give a hint in the blood. It turns out that I am sensitive to all meats with nitrates/nitrites (instant itching!), and too much vitamin c lozenges (hits my kidneys too hard.) So, now I'm on a low protein, higher fat diet (helps with the skin), and I always eat vegetarian when I eat out. My point is that you won't really know what the problem is until you do an elimination diet, its the only way. The good news is that its free and you don't have to give blood!:cool:
 
I've had celiac disease for about 2.5 years now. Before being diagnosed I too dealt with alot of the issues (some of which are already mentioned in this thread) - rashes, mouth/lips splitting, severe bloating, illness... list goes on and on. Going gluten free is step one, but just remember that you really need to be FULLY gluten free if you want to see if that is truly the only issue. As a celiac i'm obviously more sensitive than some, but companies sneak gluten into so many things. Even products that are labelled "gluten free" in big bold letters sometimes have a wheat warning on the back. Sometimes a slight contamination is enough to set off syptoms. For those of you that are having issues with your mouth, switch to gluten free chapstick/lipstick/gloss. The issue stems from things going on internally , but gluten on the outside will only elevate the problem.

Good luck to all of you that are dealing with food sensitivity and intolerance issues. Figuring it out can be a long road and issues sometimes tend to get uglier and more severe as you detox the "bad" stuff out of your body. It is SO worth it to feel better though... SO WORTH IT!
 
This is a timely thread. My DD (13) has been having a lot of gastrointestinal issues lately, and I suggested to her that she might have a sensitivity to gluten. Yesterday was day 1 gluten-free, and she felt a lot better already. I'm trying to do paleo, which is pretty much naturally gluten-free, but I don't think she's ready to make that big a change, because that eliminates almost everything she's willing to eat. Hopefully if she feels better she'll be willing to add more vegetables, fruits and meat to her diet instead of all the bread, etc.
 
I was diagnosed with celiac disease over 15 years ago. I started with a traditional gluten free diet and then 4 years ago went grain free.

I have a couple of resources I wanted to share. Elana’s Pantry has a ton of delicious recipes including tasty treats. Every recipe is grain free and dairy free. She primarily uses almond flour and coconut flour.

Also, if you want to know for sure if you have CD or a gluten sensitivity a genetic test is the way to go. The other tests can come back false negative. You can order the test yourself, you do not have to go through your doctor. It is a simple mouth swab. The link to a genetic test at Enterolab.com is: https://enterolab.com/StaticPages/TestInfo.aspx#gene. You want to ensure you order the genetic test, Gluten Sensitivity Gene Test (Molecular HLA-DQB1 analysis). I am not affiliated with this company in any way – just wanting to share.

A great website that gives a ton of information on gluten free/grain free is Gluten Free Society - Education for gluten sensitive and intolerant individuals. This is the first doctor I came across that talked about gluten being in all grains and how people with celiac are impacted by all grains not just wheat. Again, not affiliated in any way.

I hope this helps.
 
I was fighting cancer about 12 years ago and ended up developing allergies to the things I was eating a lot of - dairy, eggs and bananas. The one I can't figure out is being allergic to red kidney beans?!!! I think dealing with this helped prepare me for the mother of all allergies: gluten. My DD was diagnosed with Celiacs a few years ago. Eating at home is easier than when she goes to a friend's house, or if we go to a party - I usually end up bringing some GF choices for her. I'm amazed how many friends are happy to make GF things for her - it's not as daunting as it used to be.

Off the top of my head:
Better Batter flour blend - available online - is the best.

Most soy sauce contains wheat. Check the label!

There's a blog & cookbook author who writes "Gluten Free on a Shoestring." Her recipes are great! "Shoestring" is relative - eating GF can be expensive.

There are tons of GF recipes on Pinterest, allrecipes - I definitely read the reviews first, because some results are questionable.

Supermarkets like Kroger have tons of items. Smaller stores like trader joes and natural grocer/vitamin cottage are good, too. Amazon is a good resource, too. Our Walmart gets some interesting new items in, too.

It's usually better to try something new than to try and replace a non GF item. Although Glutino pretzels are the best pretzels ever!
 
I've been following a primal/paleo eating plan for two years and when I fall of the wagon my gut pays for it. I used to get a veggie sub from Subway and would make MANY trips to the bathroom the following day. For some reason I attributed it to all the veggies in the sub. Then after a couple years (yes, I'm slow. Plus I'd only get the sub a couple times/year) I thought, "wait, this isn't any more than the salads I eat." I'd heard about paleo here, tried Robb Wolfe's 30 challenge and was hooked. You might find a lot of food ideas on paleo/primal sites. I don't buy gluten free breads, cereals etc. I just consume food that naturally doesn't have gluten (fruits, veggies, meat, fish).
 
Pulling the thread back up for my 4 week post appointment update.

So today is 4 weeks later and I'm down 5 pounds. I have been doing the same exercises as usual, but my diet has changed a lot. I have not been very good about the portions so I was surprised I lost weight. I can't imagine what would happen if I really apply myself when it comes to diet on a weekly basis. I know I am sensitive to wheat and gluten and those are out of my diet, but my doctor told me that once I am allergic or sensitive to those I should be careful with all grains. I noticed that when I eat something with corn or oats I get really itchy, even the gluten free versions, but rice doesn't give me that reaction. And also I can eat corn on the cob, but not gluten free corn cereal. Weird. I know it's going to take me awhile to figure this out. Thanks to all for your replies. This thread has been very helpful. :D
 
IslandRose said:
Pulling the thread back up for my 4 week post appointment update.

So today is 4 weeks later and I'm down 5 pounds. I have been doing the same exercises as usual, but my diet has changed a lot. I have not been very good about the portions so I was surprised I lost weight. I can't imagine what would happen if I really apply myself when it comes to diet on a weekly basis. I know I am sensitive to wheat and gluten and those are out of my diet, but my doctor told me that once I am allergic or sensitive to those I should be careful with all grains. I noticed that when I eat something with corn or oats I get really itchy, even the gluten free versions, but rice doesn't give me that reaction. And also I can eat corn on the cob, but not gluten free corn cereal. Weird. I know it's going to take me awhile to figure this out. Thanks to all for your replies. This thread has been very helpful. :D
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The likelihood that you are sensitive to gluten is very small. It is more likely that you have a problem with some of the simple sugars/oligosacchrides that are present in everything vegetarian. Taking out wheat works well because it removes fructans and a lot of glucose out of your diet. People mistake it for gluten sensitivity because there is so much marketing hype for gluten free products. By itself, eliminating wheat (not gluten) may be enough for a lot of people. If you are like the rest of us, it will work for a while and then you find that it isn't enough anymore.

Cathe posted an article about the FODMAP diet earlier this year. It is the diet recommended for people with IBS. It is worth taking a look at it. It will give you a list of the offending foods and how to figure out the ones that bother you. Essentially, the food you eat can be turned into other chemicals by intestinal bacteria and those chemicals make you sick. You need to make sure that they never get their hands on the offending foods by controlling what and how much you eat and the combination of foods that you eat together. It is a process of trial and error. It almost always involves controlling the overall amount of glucose from all sources and minimizing or totally eliminating fructose. You may also find that you have a problem with a lot of the food additives that find their way into not just processed foods but many of the ingredients we buy to make our food.

I still have to control the amount of lettuce I add to my salad and most vegetables/beans/grains in general. I couldn't have ever imagined that lettuce can be a problem.
 
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