What Am I Missing?

[almostnrn]

I am so aggrivated right now with this disease. A couple of weeks ago my DH flared pretty bad (the cause is still kind of a mystery to me) which only seems to happen to me with large and consistant quantities of gluten, prior to that I had been good as gold for quite some time. Thought I had it all under control until this week. I went to my first celiac support group meeting which just happened to be hosting their annual gluten-free potluck. There were 2 vendors there; one with desserts, and I've had those before with no reaction and one with gluten-free bread. This is by far the best bread I've had and the only I've found pallatable. As a matter of fact prior to this I had given up on the idea of bread peroid. Here I was all giddy with delight....until I got home. By then the gas and bloating had started which was followed by two days of nausea, fatigue, etc. So I finally felt like I could eat something yesterday. I pulled out the new bread (which is certified gluten-free) and make the most wonderful grilled cheese. Glad I enjoyed it then because this morning has been a different story. New spots, GI distress, gas...you all know the routine. So clearly it must be the bread right? I know that lots of you have several other food intollerances as well and I"m wondering if I"m developing others too. But are the symptoms of other food problems the same as those of a glutening? The only thing my husband and I can come up with in the ingredient list would be yeast. I"ve had all of the other flours used in the bread without consequence. I am quite litterally at the end of my rope here and I'm getting to the point where I"m terrified to try anything different or new. I'm not sure if the DH is popping up new spots from the last bad flare a few weeks ago or if its related to this. I asked my dermatologist if he had any idea on how delayed a flare could be or not be and get this he encouraged me to "cheat" on my diet and then keep a journal. Why oh why can the medical community not get it....and why aren't they doing a better job of educating themselves? With current statistics suggusting 1 in 135 people having celiac its not like there is just a handful of us out there!! Sorry for the rant all, but I'm just feeling incredibly frustrated right now and I'm really tired of something so simple as eating being such a chore. Mostly....today I'm just tired of not being "normal" and healthy.

[ArtGirl]

I'm so sorry you've had to got through all this. Hope you get to feeling better soon.

Almost all my food-allergy related symptoms are GI in nature (gas, cramps and D). Gluten causes the most severe symptoms, then corn, then everything else. I've yet to get a real handle on what causes what exactly, as I do have some other minor symptoms such as runny nose, mild headache and itchy skin.

Is this bread a loaf you bought at the meeting? If it is, I'd throw it away. You'd probably be safe making your own bread from the same ingredients you purchase separately. However, iff it IS yeast that's causing the problem, you could do a challenge with just yeast to either rule it out or confirm your suspicions.

Hang in there. Remember, this journey has its hills and valleys - you just have to keep on walking to get out of the valley and back up on the hill. And, yes, it's a bummer to have to be thinking about one's body and food and all that. When I get down about this (which I have been these last few days) I tell myself that although these food intolerances and allergies are a great inconvience, there are certainly other diseases that would be far worse. (It helps sometimes to put this into perspective - but not always .)

[Guhlia]

I really don't have anything useful to add. I just wanted to say that I hope you're feeling better soon. I agree with Artgirl, I'd get rid of the bread. I wouldn't necessarily dismiss the manufacturer though. Perhaps you could call them to find out if their bread is made in a dedicated facility.

[L.A.]

I understand your frustration. I have had reactions to products that are gluten free and left wondering was it the new gluten free product I just tried or did I get glutened in an other way I was unaware of. I find I eat the same "safe" things over and over and am very hesitant to try anything new for fear of getting sick--makes one rather paranoid doesn't it. Big Hug.

[Green12]

But are the symptoms of other food problems the same as those of a glutening?

Many people on this board, including me, report having the same symptoms of a glutening when eating other foods they are intolerant to- so that could be a possibility.

I don't know anything about DH, so I'm not sure if it can appear with other food intolerances, outside of gluten?

Since you reacted twice to the bread, I would stay clear of it.

Hope you feel better

[Guest cassidy]

I know you said the bread is gluten-free, but is it produced in a facility that contains gluten? In the beginning I thought people were crazy for worrying about this until I got glutened by gluten-free products that had cc issues from being produced on the same lines. We have a local bread company but I checked and they just wash everything down between gluten foods and gluten-free foods. I won't try anything because I'm afraid I'm going to get sick.

I realize that other intolerances may cause problems, and I don't have dh, but I have never heard of dh symptoms from anything other than gluten. I had never heard of them until I found out about celiac and I would like that if people got dh from peanuts or soy or something, that they would be more common and in the news. I don't have any knowledge on this, it is just my opinion.

Hope you feel better and figure it out. What type of bread was it? Maybe someone has had an experience with them.

[mamaw]

I hope you are feeling better & I agree the mediacl doctors need to get up tp speed with this issue.It's bad enough when family & friends feel you may have went over the edge but it just kills me when a doctor has no clue.

Also it could have been a combo of flours & such. I sometimes can eat a certain food with no problems then next time I eat the same thing with more things added with it --- all of a sudden I'm down & out.Remember to some have issues with rice...my sister who is not gluten-free eats rice or chicken she instantly starts sneezing her head off. We alway know when she eats it!!!

hope things get better

mamaw

[almostnrn]

Thanks to all of you for commenting. The bread is now in the trash . I spoke with the gentleman who started the company and it is indeed a dedicated facility and guaranteed gluten-free. He was a retired baker and his grandson was diagnosed with celiac. The family was concerned because he wouldn't eat any of the current breads out there so they started making their own. What a shame this is happening to me because man is it good!

I think on the topic of other food allergies/sensitivities I have been in denial. I guess I can't imagine eliminating even more food, but unfortunately that is most likely what is going on. The 2 big differences I've noticed with this last reaction are...no brain fog and no headache. I've also started to develop a rash that is definately not DH. I will be calling to schedule an appt. with my MD to look at the possibility of testing for other food allergies. Since we are a military family that could take a little bit so I will try to keep track on my own as well. There were some other symptoms mentioned as well like a stuffy nose, etc. which I can relate. So the search will continue... Geez, with all of my limitations I'd expect to be in a much smaller size by now. Guess as long as I can still eat snickers bars and Graters ice cream that won't be an issue!

[almostnrn]

When I get down about this (which I have been these last few days) I tell myself that although these food intolerances and allergies are a great inconvience, there are certainly other diseases that would be far worse. (It helps sometimes to put this into perspective - but not always .)

You are soooo right about that. I lost my mom this year to cancer. She was way too young and too wonderful to go through what she did. When she was still alive it was unbelieveably easy to keep my "illness" in perspective. Although, we used to laugh all the time that she could eat any and everything she wanted and wouldn't and I wanted to do that but couldn't. Isn't it funny how that works out sometimes. Anyways, thank you for that gentle reminder.

[daffadilly]

Dear Almost,

One word: cross contamination, (okay it was two) if it was not at the bakery it was in one or more of the gluten-free grains that they used. If it is the same grain that you use without a problem it could be the supplier of the grain, maybe ground on different equipment etc. I do not have DH, but I get glutened by most of the gluten-free stuff, so I just do not eat it. I also get glutened by Almond Flour from a certain common brand. I need to grind my own, because I can eat almonds all day with no problems.

I keep a dish of almonds and walnuts sitting out in the kitchen at the office, yesterday I forgot & reached for ONE walnut half, ate it, then got a severe stomach cramp, & yep a little bit later it was a trip to the bathroom. I had forgotten that I cannot eat out of that dish of nuts, because the guys in the office eat toast etc, & then scoop out the walnuts or almonds with their wheaty hands. With me gluten is like the peanut allergy - there is no amount that I do not react to.

Also, did he start that bakery with spanking brand new pans and equipment, or get used stuff? I would guess used stuff since he was already a baker and probably had the equipment or knew someone that did.

[kbtoyssni]

If it is the yeast that's a problem, it might not be unusual that you're reacting to it now when you didn't before. Before your body was so overloaded from all the gluten it probably didn't have much left to fight the yeast but now that it's healed the yeast is starting to become the "dominant" food intolerance.

I sometimes get random symptoms, too. I have a lot of trouble tracing them and most of the time I am 99.999% sure it has nothing to do with gluten. I try to find a pattern, but I just can't. Sometimes I wonder if it's quantities of food that I eat. Maybe I only react if I eat a certain amount. Or I only react when my immune system is already stressed out from illness.

[almostnrn]

Wonderful information indeed!! I guess the farther I get into my gluten free journey the more I realize I have so much to learn. This message board has been an invaluable resource for me, not just for learning new things like recipes, good products to use and such but the sheer knowledge everyone on here has about celiac and the gluten-free lifestyle. CC is an issue that I am just really starting to get a grasp on. Thanks again to all, your imput has not only been very informative but uplifting in a moment I was feeling so down.

[susan in colorado]

OK...I have been gluten-free since April this year and have felt great...then today I went hog wild...so far I have had a big muffin from the convenience store...a halloween cupcake and a kit-kat bar...what happened to me...I woke up depressed today and the only thing I could think of is I WANT FOOD, esp food I can't have.

[almostnrn]

OK...I have been gluten-free since April this year and have felt great...then today I went hog wild...so far I have had a big muffin from the convenience store...a halloween cupcake and a kit-kat bar...what happened to me...I woke up depressed today and the only thing I could think of is I WANT FOOD, esp food I can't have.

How are you feeling? I'm hoping you will continue to be ok and not have too serious of a reaction. I did this once or twice shortly after I started the gluten-free diet but have not done so intentionally since my EGD this past summer when they made me eat the stuff. I think quitting a gluten filled diet can be as difficult for some as quitting smoking. Not to mention the fact that a gluten-free diet can certainly be more time consuming to prepare, that alone has been the source of many meltdowns for me. I hope you don't mind if I give you a tip....I try to keep at least 1 mix in the house. Sometimes its for gluten-free cookies, brownies, muffins, etc. That way when I wake up in a mood there is an easy solution in sight. I know its a lot easier said than done sometimes. Oh one more thing...I have tried to mentally change my idea of things I can't have to gluten-free foods that I could eat but shouldn't like a Snickers or Ben and Jerry ice cream. That way I can still feel as if I have "indulged" without falling off the wagon. I hope this helps, and like I said before I hope you feel ok!!!

[Aerin328]

You said you had grilled cheese before you got sick... perhaps it is actually casein intolerance? From what I understand a lot of celiacs who are have immune reactions to gluten also have reactions to casein (the protein in dairy products). In fact Enterolab tests casein automatically when you order the celiac panel. Just a thought!

Christian

[CMCM]

Christian is right about the casein intolerance.....I always thought I was lactose intolerant (that's a sensitivity to milk SUGAR), and I probably am, but I found out thru Enterolab testing that I am also casein intolerant...casein is the milk protein. I actually think casein and/or lactose in dairy gives me more problems than does the gluten. Or the two go hand in hand and pack a double whammy. Also, allergies/sensitivities/intolerances don't usually occur in isolation. If you have a system that is intolerant to one thing, the likelihood is great that there are a whole list of things you don't do well with.

An allergist once told me that for virtually ANY food it's best to rotate eating it....i.e. if you have a particular food one day, wait about 4 days before you eat it again. I have seen with myself that continually eating something can have a cumulative effect. The 4-day window between eating something again seems to help a lot in preventing reactions.

There are just so many reactive foods out there....probably less variety is better for you, too. Find out what never bothers you and make those things central to your diet. For other things, try them on an occasional basis but never day after day.

[daffadilly]

Almost, that is what I do about eating something that I really should not, I of course would never put a crumb of gluten near my face but now a candy bar or better yet, I made myself a huge pan of gluten free dairy free fudge, now that stuff was baddddddd in such a good chocolatey way.

I also would never be without a bag of Gluten free Pantry brownies, not that I ever eat them, but they are in the pantry if I want to or if I need to bake a gluten-free treat for some of my friends.

another badish treat for me is a fried sweet potato with an onion - they fry up just like regular potatoes (which I am allergic to). At least I use extra light olive oil to fry in.

So I would second what Almost does if you feel like being bad and cheating better to cheat on something that is allowed like a banana split, ice cream & chocolate syrup, candy bars, or whatever is your comfort food treat.

[almostnrn]

Christian and CMCM, thanks for the heads up on Casien. I'm wondering if that is something I should look into even though I have never had any problems (as far as noticeable affects) with cheese and use it fairly frequently. I will read up on it for sure though!

[jukie]

I also thought I was tolerating cheese but eliminated all dairy after testing positive for casein. Then one day I forgot to wash my hands after making a gluten-free pizza for DS and found out the hard way just how much of a problem cheese really was for me...from an accidental cross contamination It's definitely worth considering the possibility. Hope you're feeling better soon!

[almostnrn]

HOw do I go about getting tested for that? Just my family doc?