Diagnosed Yesterday

[Strawberry-Jam]

I'm sure you get a lot of posts like this but I wanted to see what y'all had to say about my specific situation.

I was diagnosed with Celiac Disease yesterday. My biopsy showed "inflammation" (positive) and my blood tests were undoubtedly positive (he said that for one of the #s under 30 was normal and I had 137 or smth like that).

I have gone through everything in my pantry that has wheat, barley, rye, or derivatives (including Malt flavor, etc.) and put it aside or given it to my roommate. I then went on a shopping spree getting more rice, gluten-free flours, canned veggies, and various gluten-free items that I could be sure of (including gluten-free oats).

I've had constant fatigue, headaches, and sleeping problems since I was in high school, but in this last year I started having terrible acid reflux, stomachaches, gas, bloating, and nausea. There were times where I wouldn't eat for days because I was afraid of reflux... more recently I've been constantly hungry instead. I've also had mostly constipation with random cramps and D that shows up every few weeks and I've never been able to link to any specific food.

I'm glad to finally have my diagnosis so I can start getting better. However, I don't know how careful I need to be, since I don't know what I'm reacting to. I've been on a gluten-free diet for only two days now. I read that even tiny crumbs can hurt some people... is Celiac something that you either have or don't, and cross-contamination etc. hurts everyone pretty bad, or it is possible to have celiac and not suffer damage (known or unknown) with small amounts of gluten?

Basically, I mean... Do I need new dishes, etc.? That would be hard since I share a home with a fellow student who has no allergies. Do I need to treat my kitchen like a biohazard, since in the past when baking I would get flour everywhere, and try to disinfect everything down to the last? What about communion on Sunday mornings? What about... what about... what about... you see what I'm getting at. I want to make sure that my gluten-free diet is effective in the long run, and that I'm not undermining myself by failing to take certain things into account right here and now, at the very beginning.

Basically... help??

[AzizaRivers]

I'll try to help here because I think we're about the same age and I'm in a similar situation.

To start, even though you don't know how sensitive you are, you need to assume the worst while you're healing. You don't need to get new dishes (just make sure things get washed properly) but you should get new non-stick pans/sheets and a skillet if you use one, especially if these things are scratched. Gluten can get cooked/baked in there and make you sick.

Keep your gluten-free things in a separate place (a different cabinet or shelf will do) from gluteny things. Make sure your roommate understands just just because you aren't going into anaphylactic shock doesn't mean it's not important that you don't get contaminated at all. You will suffer damage to your intestines whether you react or not, and you will likely react and get sick. Your kitchen doesn't need to be a biohazard, but if your roommate bakes, she needs to make sure to wipe up well afterwards..and you probably shouldn't be baking in there at the same time or shortly afterwards as flour can hang out in the air.

Unfortunately, you can't take communion. Talk to your church about whether you can provide a gluten-free wafer (they do exist). I have heard of some members here having a hard time in certain churches because they believe the host must be made of wheat in order to be valid. I have been to Catholic, Episcopal and other churches since going gluten-free and have either just take the wine, brought my own substitute (a cracker, maybe) or sometimes had to just skip it. Talk to your pastor and try to work something out.

It's good that you're aware of the need to be very careful and take this seriously!

[Strawberry-Jam]

thanks for your help.

Currently all my food is on the bottom shelf... should I ask my roommate if we can switch shelves so my food is on the top? College student here, so no other storage space.

As for communion, I am Eastern Orthodox... a group that believes it must be wheat bread and grape wine for valid consecration. However, I talked to my priest and I can receive the wine alone.

Also, all our pans are already NOT nonstick... but should I avoid wooden spoons, spatulas etc? what about our pasta strainer? Cutting boards?

My symptoms aren't so bad that I can't function--I never skip class, I get mostly As... the fatigue and brain fog take a severe toll on my energy level, but it's never intolerable. So I would imagine that a miniscule amount of cross-contamination wouldn't hurt me too much. I guess I'm wondering if there are truly varying scales/degrees of the disease or if the manifest effects (what you feel physically) are the only thing that's different.

[diane64]

A quick note about receiving communion. I am Catholic and receive a low gluten host. It does not bother me. My faith has the samw belief- the wafer must have some wheat in it! I do not receive the wine. I don't because I am afraid of cross contamination. So may people are drinking from that cup, right after eating a gluteny wafer! Also, so people dip the wafer in the wine.

Just some things to think about.

Good luck!

[AerinA]

When I started the diet, I got one plastic cooking spoon and one cutting board and a separate strainer for pasta (imagine trying to scrub all the gluten off those--good luck!!) We have one pan that I make gluten free pasta with, and the skillet has become gluten free. I try to keep everything as separate as possible, including in the fridge, because I know some contamination WILL happen and the more I can cut down on it, the better. Sensitivities vary, but most people get more sensitive to the gluten when they haven't had any in awhile, a lot of people get sick from very, very low levels of gluten... my stomach went on a 3 day rampage recently and I don't even know what I ate, it couldn't have been that much, and I haven't even been on the diet that long. So the best thing to do is to develop good habits regarding cross-contamination so that if the day comes that even tiny amounts of gluten make you sick, you won't have to once again re-arrange your lifestyle--on top of the fact that gluten is making you sick when you consume it whether you feel it or not.

It seems overwhelming at first, but it does get easier.

Best of luck to you, and if you have more questions, feel free to ask.

[GlutenFreeManna]

thanks for your help.

Currently all my food is on the bottom shelf... should I ask my roommate if we can switch shelves so my food is on the top? College student here, so no other storage space.

As for communion, I am Eastern Orthodox... a group that believes it must be wheat bread and grape wine for valid consecration. However, I talked to my priest and I can receive the wine alone.

Also, all our pans are already NOT nonstick... but should I avoid wooden spoons, spatulas etc? what about our pasta strainer? Cutting boards?

My symptoms aren't so bad that I can't function--I never skip class, I get mostly As... the fatigue and brain fog take a severe toll on my energy level, but it's never intolerable. So I would imagine that a miniscule amount of cross-contamination wouldn't hurt me too much. I guess I'm wondering if there are truly varying scales/degrees of the disease or if the manifest effects (what you feel physically) are the only thing that's different.

If you were diagnosed by blood test, have your doctor do a follow up test in a few months to make sure your numbers have gone down. If you are following the diet well enoguh your numbers will be negative. If you are getting too much CC then you will still have slightly elevated numbers. Just be as diligent as you can because even if it doesn't make you sick it is doing some damage to your body. Small amounts can also have a culmulative effect for some people--i.e. you might not feel bad after the first few times but all of a sudden you can hit a wall and feel aweful after several times in a row having the small amounts of cc. So do all you can to keep healthy.

Get your own new wooden spoons and spatulas and put some colored tape on the handle or something and let your roommate know not to use it. I would get your own strainer, cutting board and bread knife too for gltuen free only. If you must use your roommate's cutting board you can put down wax paper or paper towel on it to prevent cc. You can also use foil or parchment papers on shared cookie sheets. wash any stainless steel pans you use really well before you use them. You can share things like cups and plates and silverware but if your RM bakes a lot with flour you may want to rinse everythign off before putting your food on it as flour dust can go everywhere. also ask your RM to warn you if they are going to be baking with flour so you can try not to be in the kitchen. I have read flour can stay in the air for hours after baking. Some people have problems with breathing in flour dust. as far as the food shelves go as long as your RM doesn't have flour or crumbly glutne items (bread, crackers, etc) stored on the shelf above yours it shouldn't matter too much. It can't hurt to ask to switch shelves though and explain why, especially if they like to stand near the pantry and eat crackers or something If your RM seems like they want to accomodate you, you could even ask for a counter space in the kitchen be designated gluten free for you to prepare your food only there. Many people in mixed households do that and it works out well because you only have to worry about wiping down that one counter before you prepare your food.

[Strawberry-Jam]

thanks for your help!

I have completely cleaned out our pantry shelves and placed my food on the top two shelves and hers on the bottom two--she has open bags of chips and cookies on 'em, so it made sense to switch. The middle shelf is spices and stuff we share that are all gluten-free as far as I know. And I found a lot of crumbs when I was cleaning out the pantry... O_o granted they could be cornmeal crumbs and sugar and salt etc., but still. Next I'll work on the fridge, I guess, cleaning it out and making sure I put gluten-free leftovers on the top shelves.

Looks like I'll be making another shopping trip for some new wooden spoons, cutting board, colander, etc. I'll store them in my room so there's no accidents or confusion.

Anything else I should worry about?

I'm also giving up all animal products (including dairy) for Lent, so just in case I do have a lactose problem (even though I don't think I do), it'll give my gut a chance to heal for 40+ days before I start reintroducing it.

[AerinA]

You can line the shelves with shelf paper to prevent wheat residue from getting on the packages. Doesn't sound like a big deal, and sometimes it isn't, but take a box of gluten free crackers out, get crumbs on your hands, then touch the crackers = possible cross contamination. Also remind your roommate of things like, if you have an ice maker, don't touch wheat stuff and then stick hands in the ice pool, or get your own ice trays. Same with peanut butter and butter, you will probably need your own containers since these things tend to get crumbs in them.

[Npealer]

Hey Strawberry we were diagnosed the same day So I am in the same boat as you for the moment on trying to get my life as gluten-free as possible. I just wanted to wish you luck and to let you know someone else is starting from scratch just like you on this new gluten-free lifestyle.

[Strawberry-Jam]

Good luck to you, too!

I definitely noticed symptoms from dairy the minute I went gluten free so I would suggest you cut out dairy as well at first.

It's good not to be alone in this.

[GlutenFreeManna]

thanks for your help!

I have completely cleaned out our pantry shelves and placed my food on the top two shelves and hers on the bottom two--she has open bags of chips and cookies on 'em, so it made sense to switch. The middle shelf is spices and stuff we share that are all gluten-free as far as I know. And I found a lot of crumbs when I was cleaning out the pantry... O_o granted they could be cornmeal crumbs and sugar and salt etc., but still. Next I'll work on the fridge, I guess, cleaning it out and making sure I put gluten-free leftovers on the top shelves.

Looks like I'll be making another shopping trip for some new wooden spoons, cutting board, colander, etc. I'll store them in my room so there's no accidents or confusion.

Anything else I should worry about?

I'm also giving up all animal products (including dairy) for Lent, so just in case I do have a lactose problem (even though I don't think I do), it'll give my gut a chance to heal for 40+ days before I start reintroducing it.

The only other thing I will warn you about from this post is shared spices or shared sugar. If your roommate likes to bake, the spices/sugar could be contaminated. Some people, for example, use the same measuring spoons for spices as they use on the flour. All it takes is one time of them sticking the spoon in the flour first and then sticking it in the bag of sugar or the spice jar and the "gluten free" spices are contaminated with wheat flour. So you may want to get you own and mark them clearly just to be safe.

[Strawberry-Jam]

Ugh. My roommate doesn't really bake, but I do... did... and I think I did that, at least with the sugar. I really don't know! But I have a feeling I did CC myself a lot before this.

[GlutenFreeManna]

Ugh. My roommate doesn't really bake, but I do... did... and I think I did that, at least with the sugar. I really don't know! But I have a feeling I did CC myself a lot before this.

Sorry hun, time to get a new bag of sugar. Also replace anything you used to use a lot for cookies or cake or bread-- like cinnamon, nutmeg, etc. Or if you ever used to bread chicken or veggies with flour and other spices those spices are suspect too. I know those spices are expensive. Just replace what you use everyday for now (and use a sharpie to write the date you bought it on the cap so you know when it was replaced) and you can gradually rebuild your spice collection.

[GFinDC]

Also check all your meds and vitamins for gluten. It is easier to go with a whole foods diet to start out. You can avoid lots of time reading labels and scratching our head if you stick with whole foods.

[Strawberry-Jam]

Totally cleaned out my fridge the other day, washing the shelves in the sink and wiping all crumbs etc. out. Looks very clean and nice, XD. I put all my food on the top shelves, and my roommate's on the bottom, and put gluten-free shared stuff (like eggs, fruit juices, etc) in the middle. Then I labeled the top shelf of the fridge and the pantry "gluten-free!" in purple sharpie. XD maybe a little overboard but ugh. Been having a lot of reflux lately. Didn't notice it till it came back--it had been going away!! But I think gluten-free reflux trigger foods like acids (tomatoes) and alcohol still give me reflux. But bread etc. used to as well. I'm hoping that after a month or so gluten-free I can eat tomatoes and drink rum again... idk. I'd hate to have celiac AND "regular" acid reflux at 21.

Also, I have new sugar, but I haven't thrown out the other stuff and washed the tin yet. Will soon. And I'm pretty sure none of my spices are CC because I only use teaspoons with them but cups with the flour. I do have new cinnamon though.

I also called about my multivitamins, since only "soy" was listed as an allergen. They told me there's a possibility of CC and I shouldn't take them, so I ordered gluten-free vitamins off this site, and some gluten-free/allergen-free sublingual B12 from elsewhere for energy. My other medicines I take are Nexium and Elavil (Amitriptyline). I think both are gluten-free?

Huge improvement already from eliminating dairy! Even small amounts in milk chocolate were bothering me, it seemed. Finally cut it all and got dairy-free coconut-milk-based milk and ice cream.

[Strawberry-Jam]

Another update:

I think my Nexium might be causing problems instead of fixing 'em. I ate some of my coconut milk ice cream today, expecting it go go over smoothly--but right after eating it, I got all bloaty and burpy, with gas pains and burping up stomach contents! Just like I did with normal ice cream. But this ice cream was gluten-, dairy-, and soy-free, and I don't have any coconut allergies or problems, so I really don't think it was the coconut-milk ice cream causing problems. And if Nexium makes me burp so much I start burping up acid and food, then it's CAUSING acid reflux!!

Took some Gas-x (gel caps) and am drinking some probiotic kombucha tea right now.

I think I'm gonna quit the Nexium cold-turkey and see if a gluten- and dairy-free diet will finally get rid of my reflux, on top of avoiding typical reflux foods such as alcohol, acidic foods (tomatoes, citrus), greasy/fried foods, etc. and not eating before bedtime.

Does anyone else have tips for a celiac treating reflux without meds? Should gluten- and dairy-free be enough, if I give it time? Also, since Tums apparently has gluten, what can I take when I do end up with heartburn?

I know I've only been on the diet for a week, but I haven't actually seen any improvement yet. Ah well, gotta soldier on...

[Igg postive]

quiting the Nexium cold-turkey can cause even worse stomach symptoms at first if you have been taking it for a while. You might want to Google "quiting nexium" and see what symptoms can occur.

[Strawberry-Jam]

Thanks for the tip. I am noticing increased reflux, but it should subside soon. My mother quit Nexium recently and she was okay... and I took it very inconsistently for not very long, so I should be normal soon.

I think I was "glutened" recently... on Thurs I was hit with a sudden wave of fatigue, sharp headaches, and muscle pains, unlike anything I've felt in a long time. Now I'm suffering alternating C and D with lots of bloating and smelly gas. Can't trace the glutening, but it could have either been the bowl of gluten-free oatmeal I had on Wed--if I react to oats which I don't know yet--or CC on a plain salad w/ olive oil I had at a restaurant for a friend's b-day party. Or of course some kind of buildup of CC from things I haven't cleaned out yet or paid attention to.

How soon does it take to start becoming uber sensitive to CC? Could a miniscule amount--crumbs--already be putting me back w/ symptoms worse than my original symptoms for several days? Or is it most likely that I'm intolerant to oats, or the dairy I've had since going gluten-free?

at any rate, I cleaned my desk and computer area really well since I eat here and get crumbs everywhere, and just came back from the store with a strainer, wooden utensils, and a cutting board all my own.

idk. also another question: I have a few cracked ceramic mugs (the glaze cracked on the inside that is) which I used for barley tea on many occasions. Should I stop using these and get new ones, or if I clean them well are they okay?

[cap6]

Toss your cracked mugs. Ceramic (or pottery) will absorb through the crack. It is a vary porous material. You may notice the cracks look darker than the rest of the mug? That's because the liquid have seeped into the cracks. Put a plant in the mug. Don't use them!!

[cyberprof]

Strawberry Jam, most experts recommend waiting until you know the diet well and are healed before trying gluten-free oats. Many react to them, due to the similarity of protein. You might want to skip it for now.

[AerinA]

Lots of people also react badly to soy... and some have also developed problems with corn, potatoes, etc. Look up some of the forum posts on "leaky gut." If you are still having problems, try cutting out some of the more common offenders, it might help.

And CC is very very common in restaurants, especially those that are not aware of how very careful you have to be. Is there baking going on in the same room, which could cause flour to settle in the lettuce bin? Do they prepare sandwiches nearby, and get crumbs in the lettuce? Your salad could also have been mixed in a bowl that had previously had croutons in it. The biggest lesson is that it isn't about what's in the food, it's about where and how it's prepared. I glutened myself with some mango sorbet not long ago, it is hand-made with only mango puree and sugar syrup. I was told it was made separately from the baked goods, in a different area entirely--what could happen? Worst glutening I've had up until now. People just don't know. The best thing you can do is protect yourself. Unfortunately, gluten intolerance/Celiacs isn't understood by most people, so you have to be your own advocate and make your own decisions (and usually your own food) accordingly.

I went to the coffee shop and got myself a really pretty mug at the beginning of my diet. I hand-wash it so gluten-y residue doesn't stick to it in the dish washer. It looks different from the rest of the mugs in the house, and everyone knows it is designated "gluten free."

By the way, make sure to check your herbal teas if you have any, many of the flavored teas contain gluten. You've probably already done that, but I thought I'd mention it.

[Jeanah64]

I was recently diagnosed with celiac ,. It was discovered through a biopsy because of severe iron deffiency . My only other symptoms are a lot of headaches , bloated, and tired! I'm trying to be careful but I know I'm still most likely consuming gluten. Is this a bad idea if my symptoms aren't that severe???????

[Strawberry-Jam]

I was recently diagnosed with celiac ,. It was discovered through a biopsy because of severe iron deffiency . My only other symptoms are a lot of headaches , bloated, and tired! I'm trying to be careful but I know I'm still most likely consuming gluten. Is this a bad idea if my symptoms aren't that severe???????

Yes. Your gut needs to heal and it can't so long as you're still putting poison in it, no matter what small amounts.

[Strawberry-Jam]

Need to vent some more so here goes:

My body seems determined to get worse before it gets better. I've only been eating rice, fish, olive oil & sesame, kidney beans, and fruit juices w/ supplements for the past couple days. I even got digestive enzymes to try and help.

The bloating and gas has gone down tremendously (thank God), and the reflux is a little better, but still happens after every normal-sized meal, along with nausea. And I am just as tired and headachey as before, if not more so, am having the same sleep problems, and starting today I ITCH all over like CRAZY and have terrible dandruff. On top of that I'm having memory problems and brain fog in waves (so, better, then worse, better, then worse).

also, my period started (with the cramps and blah-ness that goes with it) today. GRRRRR.

I know I just need to be patient. It's only been a week and a half. I'm getting the blood tests redone in a month-and-a-half and talking to my doc in two months, and he thinks it'll take 2 months before I start seeing improvement. I just feel worse than before and start crying sometimes because I'm so paranoid about CC and the possibility that I may have other food intolerances on top of everything else.

so yeah. venting here. then I'll go to bed and sleep 11 hours. Good thing I only have two midterms left before spring break, a week where I can relax at home (where they are gonna be sensitive to my celiac, if as noobish as me) and hopefully improve before coming back to school.

[AerinA]

Yeah, sometimes our bodies don't really know what's good for them, so we have to just show them who's boss. And it doesn't always feel very good

I hope you start feeling better soon. It will get easier. <3