Drive-By Glutening?

[Midwest]

I learned about gluten intolerance a little while ago from a friend who suggested that might be my problem after hearing about some of my symptoms. The friend recommended that I try a gluten-free diet to see if it would make a difference. So far, two weeks into things, I think I can sense some differences. Or at least, I don't sense a lot of the problems that bothered me all the time so readily.

I suffer from bloating, gas, loss of smell, absolute exhaustion, a feeling of weakness in my muscles/joints, nausea, stomach pain, a tightness in my throat, constant throat clearing, stomach acid, facial eczema, heavy brain fog, etc.

As I noted, these things haven't really been bothering me as much the last two weeks. I've been trying to be strict about eating gluten free and have relied on a mix of fresh meats and vegetables and some gluten-free items from the "health" section of our grocery store.

Then yesterday and today I have feel like somebody hit me with a ton of bricks. I feel exhausted and my brain feels foggy. My joints ache and I all I want to do is lie down somewhere and sleep for hours. I also noticed some stomach acid issues.

So immediately I thought back to what I ate to try to find out what it could be. I bought the Barbara's Wheat Free Fig bars and baked a gluten-free bread in our bread machine (I can't remember the brand). All the other things I ate I've eaten the past two weeks so I figured it can't be that. I checked the fig bar label and noticed that it contains barley flour. It is my understanding that that contains gluten, right? So wheat free doesn't mean gluten free... The gluten free flour should be ok but I wonder if there was some contamination from using a bread machine that was used for regular breads in the past.

Anyhow I am trying to cope with all of this. I have felt sick for many years and always tried to explain to people (wife, family, friends) that there really was something going on. My doctor just chalked it up to GERD but nothing worked. Until I learned about Celiac disease and gluten-intolerance, I thought I was crazy or slowly dying of some rare, undiagnosed disease.

I am pretty convinced that I have some degree of gluten intolerance from the positive way I've felt so far. Except for the sudden backward slip (which is a definite change from the last two weeks and feels just like I *used* to feel), I am happy that I might not be crazy after all. Making the transition to a gluten-free life is going to be hard though.

[Bobbijo6681]

I learned about gluten intolerance a little while ago from a friend who suggested that might be my problem after hearing about some of my symptoms. The friend recommended that I try a gluten-free diet to see if it would make a difference. So far, two weeks into things, I think I can sense some differences. Or at least, I don't sense a lot of the problems that bothered me all the time so readily.

I suffer from bloating, gas, loss of smell, absolute exhaustion, a feeling of weakness in my muscles/joints, nausea, stomach pain, a tightness in my throat, constant throat clearing, stomach acid, facial eczema, heavy brain fog, etc.

As I noted, these things haven't really been bothering me as much the last two weeks. I've been trying to be strict about eating gluten free and have relied on a mix of fresh meats and vegetables and some gluten-free items from the "health" section of our grocery store.

Then yesterday and today I have feel like somebody hit me with a ton of bricks. I feel exhausted and my brain feels foggy. My joints ache and I all I want to do is lie down somewhere and sleep for hours. I also noticed some stomach acid issues.

So immediately I thought back to what I ate to try to find out what it could be. I bought the Barbara's Wheat Free Fig bars and baked a gluten-free bread in our bread machine (I can't remember the brand). All the other things I ate I've eaten the past two weeks so I figured it can't be that. I checked the fig bar label and noticed that it contains barley flour. It is my understanding that that contains gluten, right? So wheat free doesn't mean gluten free... The gluten free flour should be ok but I wonder if there was some contamination from using a bread machine that was used for regular breads in the past.

Anyhow I am trying to cope with all of this. I have felt sick for many years and always tried to explain to people (wife, family, friends) that there really was something going on. My doctor just chalked it up to GERD but nothing worked. Until I learned about Celiac disease and gluten-intolerance, I thought I was crazy or slowly dying of some rare, undiagnosed disease.

I am pretty convinced that I have some degree of gluten intolerance from the positive way I've felt so far. Except for the sudden backward slip (which is a definite change from the last two weeks and feels just like I *used* to feel), I am happy that I might not be crazy after all. Making the transition to a gluten-free life is going to be hard though.

Welcome to the Forum...and you have come to the right place to get answers. Don't hesitate to ask away here, everyone is willing to help as we have been there before.

YES Barley is a gluten item so you need to eliminate that as well. That fig bar is probably what did you in today. Also you may be experienceing some withdrawls from being Gluten Free. Many people here have experience that. As for the Bread Machine it depends on how easy it is to clean. If you can get into all the knooks and crannies than you should be able scrubb it clean as long as there are no scratches on the pan.

Also now that you are 2 weeks in and feeling better be cautious about going back on gluten, I didn't have very severe symptoms of Celiac until I went off gluten. Also some dr's will try and get you to go back on gluten to do testing, and I don't personally recommend that. As much as it might help you stick to the diet if you have a dx, there are many times that the tests show up as false negatives anyway and you have just glutened yourself for no reason. If you feel better stick to the diet, that simple.

Hope you are on the road to recovery!!

[Reba32]

yep, definitely the barley and cross contamination in the bread machine.

If you can buy a new bread machine and label it specifically for gluten free bread making only, do it. And if your family continues to make "regular" bread in the other machine, make sure you also get a new cutting board to be used only for gluten free foods.

[April in KC]

Welcome! Sounds like you could definitely be gluten sensitive. Yes, barley contains gluten, and yes, I think your old bread machine might have glutened you.

The quantity of gluten Celiacs can safely consume is estimated by some as 20 ppm (parts per million) and by others as none at all! Unfortunately, the human immune system can be very sensitive. The part that fights gluten is the same part that fights tiny viruses and bacteria. Right now, being newly gluten free, your immunne system is primed to put up a decent fight for any invading gluten.

My first year gluten free my reactions were quite severe, but they are less severe now (a blessing and a curse, because sometimes it's more difficult for me to tell exactly what glutened me now). You may have to buy some new utensils and keep your own condiments, etc., to be safe in your kitchen. I covered a lot of dishes and surfaces with parchment paper, aluminum foil or waxed paper until I had time to buy what I wanted. Beware the strainer/colander.

Good luck. Doesn't it feel good to feel better?

[Melanie1330]

I am so thankful for this site! I was diagnosed through a biopsy in May of 2009. I would have thought that by this time, almost a year later, I would be coping better. I feel so much better physically, but often find myself resenting the fact that I can't eat food that I love. It has been encouraging to read what you all have shared, and I pray I will come to terms with this like some many of you have. Is it normal for me to get angry when my husband eats my favorite foods in front of me, or am I being extremely selfish by thinking he could eat it when I am not home? I don't know anyone personally that has celiac disease, and although my family has been wonderful, I feel very alone. Our best friends, who have also been very supportive, took my husband and I for an overnight get-away, which consisted of a beer tasting seminar and dinner. How easily people forget, you know? And I don't blame them, I love them, but it is times like these that I have a really difficult time not being angry.

April, I am also having severe reactions as you did your first year. Honestly, there has only been one time when I knowingly ate gluten, which was probably a few weeks after my diagnosis. I understand how your reactions now are a blessing and a curse, but I am looking forward to it! I feel like now it is just a curse!

Food has always been such a wonderful thing in my life, like most people I suppose. I would eat when I was happy or down, meet friends or family out for dinner. Now, I am just plain scared of food. I have lost 50 pounds in the last 18 months. Which I needed to! A coworker commented on my weight loss today and said "maybe this celiac thing is a blessing in disguise." I really want to punch her in the throat. And two hours later she asked me if I had tried the homemade bread in the breakroom that someone brought in. Geez.

Gosh, I sound so hateful! I am really sorry for being such a downer, but I thought someone on here (although after spending some time on here tonight, I realize most people) would understand and let me vent.

To the long time members on here, the newbies thank you and need you!

[sandsurfgirl]

Bummer!!!! It's so confusing in the beginning. You would think wheat free would be safe, but nope, not necessarily. Sorry you were glutened! At least now you have your answer! If you didn't have celiac or gluten intolerance that barley wouldn't have bothered you.

[srsssss]

I am so thankful for this site! I was diagnosed through a biopsy in May of 2009. I would have thought that by this time, almost a year later, I would be coping better. I feel so much better physically, but often find myself resenting the fact that I can't eat food that I love. It has been encouraging to read what you all have shared, and I pray I will come to terms with this like some many of you have. Is it normal for me to get angry when my husband eats my favorite foods in front of me, or am I being extremely selfish by thinking he could eat it when I am not home? I don't know anyone personally that has celiac disease, and although my family has been wonderful, I feel very alone. Our best friends, who have also been very supportive, took my husband and I for an overnight get-away, which consisted of a beer tasting seminar and dinner. How easily people forget, you know? And I don't blame them, I love them, but it is times like these that I have a really difficult time not being angry.

April, I am also having severe reactions as you did your first year. Honestly, there has only been one time when I knowingly ate gluten, which was probably a few weeks after my diagnosis. I understand how your reactions now are a blessing and a curse, but I am looking forward to it! I feel like now it is just a curse!

Food has always been such a wonderful thing in my life, like most people I suppose. I would eat when I was happy or down, meet friends or family out for dinner. Now, I am just plain scared of food. I have lost 50 pounds in the last 18 months. Which I needed to! A coworker commented on my weight loss today and said "maybe this celiac thing is a blessing in disguise." I really want to punch her in the throat. And two hours later she asked me if I had tried the homemade bread in the breakroom that someone brought in. Geez.

Gosh, I sound so hateful! I am really sorry for being such a downer, but I thought someone on here (although after spending some time on here tonight, I realize most people) would understand and let me vent.

To the long time members on here, the newbies thank you and need you!

I can totally relate! I was diagnosed in Sept '09 and none of the Dr's could figure it out! It was actually a dermatologist who realized I have DH! I have all of the other symptoms and my dad, grandmother, great aunt, 2 of dad's cousins and 2 of my moms sisters ALL have it. 2 of my 3 sisters are realizing they have it too!

I have discovered allergy after allergy to other foods as well! I feel sometimes like I am going crazy for something to eat. I have figured out I can't eat dairy, soy, peanuts, maltodextrin (even corn), msg (even not derived from wheat), some of the more acidic fruits and some vegetables! Now I'm just figuring out that almonds make me break out pretty horribly as well and it feels pretty much like glutening and 4 weeks ago i had almond milk and broke out so bad i had to go on prednisone. I ate chocolate last night with almonds in it, probably 4oz of chocolate and here I am breaking out and itching like crazy, stomach making noises, brain fog, aches, insomnia, headache...

I too am "afraid" of food. I lost 70lbs since last Feb putting me back to my early 20's weight of 125 lbs! People tell me "oh great job" or "I would love to lose weight like that" yeah I want to tell them to shut up because I didn't do it on purpose and it's absolutely no fun at all figuring out all the other allergies that seem to crop up with the gluten-free thing.

I never ever eat gluten intentionally, have had a few mistakes but for the most part it's cleared up everything else too. I'm just a little frusterated with these "other allergies". Especially the way almonds make me so itchy and blister so bad as well.

Saw your post and just wanted to comment...sorry, mind has gone blank "brain fog"!

[buffettbride]

You will also want to make sure that you are not baking your gluten-free bread in the same breadmaker/pans where gluten bread is being baked.

Sounds like the barley was the bulk of your problems. Barley (including malt flavoring) and oats are kind of the buzzkill of the gluten-free world. You'd think wheat-free would be good enough, but nooooooo.

[Midwest]

Thanks all!

Fortunately I'm already feeling better today.

At times it all seems so unreal and overwhelming.

[sandsurfgirl]

Thanks all!

Fortunately I'm already feeling better today.

At times it all seems so unreal and overwhelming.

yes it really does