Diagnosed Yesterday...anxious And Need Advice Plz!

[Kimbalou]

Hi everyone. I'm new here. I'm so glad to find so much information on Celiac on the internet! This website looks great! I've been having bowel issues, fatigue, depression and anxiety for many years. I wish I hadn't waited so long to finally go to the Dr. and tell her I thought I had IBS. Blood results showed "severe" Celiac. That is what my dr. told me. I want to mention that I am a nurse, and I am seriously considering taking some time off with disability...but I'm not sure if that is "right". I am struggling emotionally already, and now to be told I have Celiac is very hard. I am also trying to look at all the things I CAN eat....and not be too negative. I needed to change my diet habits anyway! No more grabbing a cookie out of a package.

I have 3 children and the Dr. said to have them checked for it, too. My older child seems to have some symptoms of bowel issues, so I think they should all get tested. I read that 10% of your immediate relatives can have the disease...has anyone else heard that? I'm hoping my children don't have it.

I keep hearing the words "Celiac disease" in my head, crazy I know. Anxiety is not fun. The word "disease" is not a word I want associated with me!! LOL

Has anyone else here taken some time off work after being diagnosed just to deal with the shock, fatigue and bowel problems? I am exhausted! I've probably been reading way too much about it, since I am in the medical profession I tend to want to fix things right away! I want to feel better now! I know I won't starve, so I'm trying to feel creative about it, as I know I'll need to cook more, which is a good thing really.

also, did you tell your friends and family about it right away? I've told some family members outside of my own family, but no friends yet. I am tempted to post it on Facebook just to possibly hear that some of my friends might have it or they might know someone who does. BUT, I usually frown on it when people post serious things like this....and I'm afraid of what responses I might get. Sounds silly, I guess, but just want to hear what your opinion is.

On a positive note, I met a cashier at Trader joe's yesterday that said she had it. She asked if I was gluten free, and we started up a conversation. She was such a nice lady, gave me her phone number and wrote down food brands she liked. She even gave me a hug...she made me cry because she was so understanding!

Thanks for listening. looking forward to spending some time here and meeting new people!!

Kim

[Dixiebell]

Welcome Kimbalou!

[mushroom]

I tend to ignore the disease portion of celiac, and regard it instead as a 'condition' - after all, it's not contagious (only genetically inherited) and with a gluten free diet should get better rather than worse. Without denying the fact that it most definitely is a life-changing diagnosis and requires a significant adjustment in behavior and lifestyle, my basic attitude is that we can make it as big or little as we wish. You are correctly aware that the way people around us react has a lot to do with the way we feel about it, but the way we react to it also has a lot to do with the way we feel about it. If we react like it is the end of food as we know it, that we are sentenced to eating carboard and vegetable broth for the rest of our lives, then we will feel much worse about it than if we look upon it as an adventure to explore new foods and tastes and ways of cooking, a challenge to our creativity.

I see no harm in mentioning it on Facebook, but also no need to make a big deal about it either. This is one way you can have some control over the way others react to it. You do want to point out to friends and family that you can eat NO gluten and be quite firm about it, but you don't have to become a drama queen and burst into tears when you do so. If you accept it matter of factly, they most likely will too. As for fixing things right away, well it won't happen overnight, of course, but the very fact of eliminating gluten has started you down the healing path.

The first few weeks are the hardest as you learn where gluten lurks, how and where to shop, how to substitute and what to substitute, what tastes good to you and what does not in gluten free products. To get you started, most folks love Udi's bread, Tinkyada pasta, Pamela's baking mix, Van's waffles. These are good gluten free standbys. You will need to buy some Tamari sauce or La Choy soy sauce instead of your usual wheat-containing soy sauce, you will need chicken and beef bouillon that is gluten free (yes, lots of them have gluten), you will need to be careful of all sauces and marinades and salad dressings in fact.

But your basic single ingredient fresh foods are all gluten free (unless packaged with additional things) so you can shop around the outside of the supermarket for meat, fish, fruits, vegetables, and not even have to worry about looking at a label. Once you venture into the center of the store it is a different story. You will have to read labels on potato and corn chips, on dips and everything basically that has more than one ingredient.

Kudos to the checker at TJ's for recognizing you needed a hug. Here's another {{{{{hugs}}}}} and really, it is going to be all right

[Kimbalou]

Thank you Dixiebell. Mushroom, thank you for the advice and tips. Did either one of you get a biopsy to confirm the diagnosis? I don't think I will do that, the blood test clearly showed it was positive.

Did you replace your toaster? My kids are still eating wheat as of now, so should I get my own toaster? Is it really necessary?

[Skylark]

Welcome and don't panic! Welcome to the beginning of much better health. Would you feel this way about being diagnosed with an allergy? Celiac disease is no more your fault than an allergy, and it really carries no more social stigma. This is not a "big deal" disease either, as most celiacs recover 100% gluten-free and enjoy a huge improvement in their overall health. Some of us wonder whether introducing wheat into the human diet was really a good idea in the first place. You are correct that first-degree relatives are more likely to have celiac, but the number I've seen is 20%. By all means get your children tested if they show symptoms.

I don't think there's any trouble posting to Facebook if you're looking for support in what you're finding to be a rough time. Your friends will say something kind and supportive, right? Gluten intolerance is common and chances are very good there is someone else in your circle of friends who is on the diet if not celiac. I have two close friends and my Mom who are gluten-free. Also, you raise awareness and someone might get tested because of your Facebook post. We are ambassadors in a way, because gluten intolerance and the suffering it causes is so widespread.

There is plenty to eat. As you've notice, you just need to change your expectations about food a bit. Fruits, vegetable, nuts, rice, potatoes, meats, and eggs are all naturally gluten-free. I'd suggest you also avoid dairy to begin with, as it seems that very few celiacs tolerate it well at first. At least pay attention when you eat dairy to get an idea of whether it is giving you trouble.

Stick around, ask questions, and above all, don't panic!

[GFinDC]

That's don't panic and carry a bath towel! Geez!

There are celiac groups on Facebook with many members. Most areas have a celiac support group also. The CSA (celiac Sprue Assocaiation) has them, and GIG and ROCK. About 1 in 133 people have celiac, so there are a bunch of us around. But most of us'n don't know we's have'n it ya know. Doctors tell us we have IBS, or depression, or deficiencies of expensive pharamceuticals.

[sandsurfgirl]

Welcome to the club you never wanted to join! We all panic in the beginning. I ran out of Sprouts hyperventilating on my first shopping trip.

I'll have my one year anniversary on January 3rd. Because of the gluten free diet I am a totally different person. Calm, happier, and feeling good!!

Because you were so sick you may go through withdrawals. It is NORMAL. Use the search function on here and look at old threads so you know what's going on.

Eat a clean simple diet to promote healing for about a month or 6 weeks. Fresh fruits, vegetables, rice, meats, olive oil and vinegar for dressing, etc.

Don't eat tons of gluten free subs yet. They will just upset your stomach. You need to heal heal heal heal! Maybe try a simple brown rice pasta and a bread mix without a lot of ingredients in it.

Gluten Free Pantry Basic White Bread mix is awesome, easy to make, doesn't crumble has simple ingredients.

Tinkyada pasta is very good. This Italian girl was freaking out about pasta until I found that one.

I eat out like 4 to 8 times per week and I'm VERY sensitive to cross contamination, etc. so it can be done. Do your homework and be flexible on what you order. Had In N Out yesterday and having Daphne's greek tonight. I have gotten glutened a handful of times in the past year from eating out and it sucks royally but with the amount I eat out, I figure those are incredible odds.

Honor your grief process. You will go through many emotions and they are all okay. Come here to vent.

You may need to avoid dairy and soy for awhile. The tips of your villi produce those necessary enzymes and they are a mess right now. Many if not most of us are able to add dairy in some months later. For me it's recent that I am able to tolerate it regularly. Soy makes me feel like death is at my door with the worst gut pain ever so I avoid it like the plague.

WELCOME TO HEALTH and WELLNESS!!! In a few months from now this will be your "normal" and it won't be such a big deal anymore!

[mushroom]

I am totally untested - self-diagnosed; I stopped eating gluten to see if my rheumatoid arthritis would improve. And we did replace our toaster (my husband went gluten free too, and discovered later that he had dermatitis herpetiformis )

[jess-gf]

I was just diagnosed a few days ago. Welcome fellow newbie! I have not replaced my toaster.. I am undecided about it. It's a toaster oven, so I'm thinking I should be okay if I keep the grate clean or put foil underneath things I toast.

I know you must be overwhelmed. I was. I still am!

My boyfriend got this book for me and it's been pretty helpful - it's called The First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed and I was actually walking around with it today in my hand while at Trader Joe's.

[Kimbalou]

Thanks for the welcome everyone! I am confused about a few foods. I've been reading a lot, so it does get confusing. I thought meat was ok, but I read somewhere that hamburger meat might contain gluten? Also, I am not happy that my St. Ives soy meat has wheat in it. Does anyone have a suggestion for a "fake" ground beef of some kind? Is real ground beef ok? Also, I think my vegetable broth has yeast in it, that's not ok is it? I am staying away from dairy, too for awhile. I think I've had issues with it. Do you all try to stay away from things that "might" contain wheat? There's a list online I found that lists foods that might contain it. Also, I love broccoli but it doesn't love me, so I think I need to eat other green veggies. It seems like everything gives me gas!! Do you guys recommend getting the biopsy if my Dr. mentions it? I still have to see a GI doc and a nutritionist.

Kim

[jess-gf]

Also, I did post on Facebook about it. I wanted to just get it over with and try and avoid any awkwardness in the future (especially with the holidays coming up). So far everyone's been pretty understanding and supportive.

[Kimbalou]

Also, I did post on Facebook about it. I wanted to just get it over with and try and avoid any awkwardness in the future (especially with the holidays coming up). So far everyone's been pretty understanding and supportive.

Hi. I understand your feelings. Being new at this is hard. My kids have to get tested also, and my older one has a phobia around needles and shots. Should be fun!

[sb2178]

Okay-

Your questions:

plain ground beef should be okay. anything with seasonings like sausage is iffy and needs attention.

yeast should be fine.

I limit food that are made in shared facilities/on shared equipment, but haven't eliminated them entirely. The idea is that people have a set point of exposure that they can bear before symptoms/immune system jazz occurs (typically about 20 ppm) but view that as a normal curve so some are above and some below. FYI: my 6 month bloodwork is normal.

A biopsy gives you a baseline of your damage to go back to if you have problems in the future. Whether you want that to reference or not is your call. I had one, because my bloodwork and symptoms were not clear.

General advice:

Stick to plainer food, ideally less processed, until your symptoms subside. It just makes it easier for you to tell what is a problem and what is not. Like, say, chard or spinach. Then add in your new things slowly. It's much easier to have a completely gluten-free kitchen (or just a separate counter/storage space for cereal and bread if absolutely necessary) but at the very least get a separate toaster and condiments. Do honestly want to have to wipe down the counter before every time you set an apple down after you've washed it before you've eaten it?

Make sure someone tests you for deficiencies like iron, B12, Vit D, magnesium, folate, zinc and even vit A, E, and K if you've had long-standing digestive issues.

Some substitution stuff I like: corn quinoa pasta, Crunchmaster crackers, polenta, Schar chocolate hazelnut candy bars, Van's waffles. Haven't found a bread I'm wild about, so I'm living without. Bought a rice cooker which is AWESOME. Don't forget to play with weird grains like kasha, wild rice, quinoa, millet, etc as you go. Depending on where you live, you may be able to get some less common roots like taro too.

And totally remember that you can eat lots of yummy things. Like apples, poached in cider. Or risotto. Or really delicious strawberries dipped in dark chocolate. Steamed fish with black bean sauce. French fries (frozen, made at home or in a dedicated fryer). Pan roasted brussels sprouts with chestnuts. All sorts of mexican food.

[sb2178]

P.S. If you have a financial leeway/dr recommendation to take even just 3 or 4 weeks off, do it. I was between jobs and having that extra time was incredibly helpful. You're going to be spending a lot more time thinking about food in that first month, maybe even first three months. And honestly, you're sick, and it takes time to recover.

[Kimbalou]

Thank you sb2178. Today I found a lot of gluten free items at a specialty store near me. My biggest fear now is that it is EXPENSIVE!! Wow, couldn't believe the prices. But, if I want to feel better, that's what I have to do. I already had the vitamin and iron levels drawn. My dr. is getting back to me this week. By looking at how high my IgA level was, my dr. said I am "severe". So, going by that, I don't really think I need a biopsy. I am happier to know that there are so many gluten free foods out there. I am cutting out dairy too, for now.

Not sure about work, though.

I have a rice cooker, too. They are great!

[Skylark]

The diet is only expensive if you try to eat the same, eating breads, cookies, pasta, and that sort of thing. Shift over to rice, potatoes, beans, fruits, vegetables, eggs, and meats you cook yourself and you will find you're pretty much buying "normal" groceries. If anything, eliminating processed foods saves you money.

[Kimbalou]

The diet is only expensive if you try to eat the same, eating breads, cookies, pasta, and that sort of thing. Shift over to rice, potatoes, beans, fruits, vegetables, eggs, and meats you cook yourself and you will find you're pretty much buying "normal" groceries. If anything, eliminating processed foods saves you money.

You are totally right, but I still want some pasta and "junk food" now and then...I'll try to cut back more.

thanks

[sandsurfgirl]

No you should NOT do a biopsy although your doc sounds knowledgable enough not to recommend it. Your blood tests are sufficient diagnostic tools. Once you go gluten free you will likely come up negative on the biopsy. You have to be eating a TON of gluten for like a month to get a positive result on a biopsy. You know you have celiac. Time to accept it and move to a life of freedom and health.

[Judy3]

Welcome Kimbalou, I am also a fellow newbie just 2 weeks into this. I've found a lot of help here just reading and making lists. I switched to all natural/organic foods a few years ago thinking it was the chemicals making me sick so for me it's just bread, pasta, and cereal to change. And of course, in my circle of friends I am the baker, treat maker so that will be odd. I'll still make things for them but I can't eat it. I'm going to try to learn how to make my specialties that they all love gluten free and they won't be able to tell the difference I'm seeing a dietician next Friday as I also have many food allergies and diabetes so I have to learn to combine all of it.. My first impulse was to give up starchy food totally and just eat meat and vegies and fruit but my doctor poopoo'd that and said we'll help you figure this out and he also said it would be trial and error for a while.

I found Udi's bread at my market in the freezer in the natural foods section but I'm allergic to flax so had to get the white one. I'm used to eating whole wheat bread now so that is a switch. Not too bad toasted. I found brown rice tortilla's that are ok but will take some getting used to. I found Corn and Rice chex that say gluten free right across the package so I have been eating those too (a little because I do get a little belly ache from milk that I never used to get.. hmmmm or did I and I didn't know it was from the milk?)

All in due time I guess, one day at a time and if you want to talk to a fellow newbie just send me a message...

[Kimbalou]

No you should NOT do a biopsy although your doc sounds knowledgable enough not to recommend it. Your blood tests are sufficient diagnostic tools. Once you go gluten free you will likely come up negative on the biopsy. You have to be eating a TON of gluten for like a month to get a positive result on a biopsy. You know you have celiac. Time to accept it and move to a life of freedom and health.

My regular doc told me to talk to the GI doc next week about the biopsy. I really don't think I will do it. I totally agree with what you said.

[sandsurfgirl]

My regular doc told me to talk to the GI doc next week about the biopsy. I really don't think I will do it. I totally agree with what you said.

Once I got my diagnosis by blood tests I refused to see a GI doc. Two GI docs who were partners refused to test me for celiac nearly 8 years ago because they had a laundry list of reasons why I couldn't possibly have it. Two horrific pregnancies and some very sick terrible years later here I am. Celiac!

If you read the stories on here you'll see there aren't a whole lot of good GI docs out there. Most are ignorant about celiac and they want $$$$ so of course they want to do a surgery on you. Why go for the little paychecks when you can get somebody for anesthesia and a biopsy?

You know you have celiac. GI docs will not guide you through the process of eliminating gluten. So... in my opinion it's a waste of time, unless you suspect you have other issues and want to get a colonoscopy and scope to see about that. I chose to wait and see and my symptoms are cleared up, so I'm not going to a GI.

[Kimbalou]

Well, I'll go ahead and go to the GI doc, but will refuse the biopsy. I have no problem doing that. The nutritionist will probably be the best person to see! I'm just so glad my regular dr. found out what was going on!

[Loey]

I was just diagnosed a few days ago. Welcome fellow newbie! I have not replaced my toaster.. I am undecided about it. It's a toaster oven, so I'm thinking I should be okay if I keep the grate clean or put foil underneath things I toast.

I know you must be overwhelmed. I was. I still am!

My boyfriend got this book for me and it's been pretty helpful - it's called Open Original Shared Link and I was actually walking around with it today in my hand while at Trader Joe's.

Welcome and yes, if it was used with regular bread then I personally would replace it. I don't know how thoroughly you can clean it from the the cross contamination.

Loey

[Loey]

Hi everyone. I'm new here. I'm so glad to find so much information on Celiac on the internet! This website looks great! I've been having bowel issues, fatigue, depression and anxiety for many years. I wish I hadn't waited so long to finally go to the Dr. and tell her I thought I had IBS. Blood results showed "severe" Celiac. That is what my dr. told me. I want to mention that I am a nurse, and I am seriously considering taking some time off with disability...but I'm not sure if that is "right". I am struggling emotionally already, and now to be told I have Celiac is very hard. I am also trying to look at all the things I CAN eat....and not be too negative. I needed to change my diet habits anyway! No more grabbing a cookie out of a package.

I have 3 children and the Dr. said to have them checked for it, too. My older child seems to have some symptoms of bowel issues, so I think they should all get tested. I read that 10% of your immediate relatives can have the disease...has anyone else heard that? I'm hoping my children don't have it.

I keep hearing the words "Celiac disease" in my head, crazy I know. Anxiety is not fun. The word "disease" is not a word I want associated with me!! LOL

Has anyone else here taken some time off work after being diagnosed just to deal with the shock, fatigue and bowel problems? I am exhausted! I've probably been reading way too much about it, since I am in the medical profession I tend to want to fix things right away! I want to feel better now! I know I won't starve, so I'm trying to feel creative about it, as I know I'll need to cook more, which is a good thing really.

also, did you tell your friends and family about it right away? I've told some family members outside of my own family, but no friends yet. I am tempted to post it on Facebook just to possibly hear that some of my friends might have it or they might know someone who does. BUT, I usually frown on it when people post serious things like this....and I'm afraid of what responses I might get. Sounds silly, I guess, but just want to hear what your opinion is.

On a positive note, I met a cashier at Trader joe's yesterday that said she had it. She asked if I was gluten free, and we started up a conversation. She was such a nice lady, gave me her phone number and wrote down food brands she liked. She even gave me a hug...she made me cry because she was so understanding!

Thanks for listening. looking forward to spending some time here and meeting new people!!

Kim

Welcome Kim,

I think you have just found the most amazing group of people you could ever hope to find in one place on this forum. I joined in October and have learned something new every day.

As for taking time of from work you need to decide if that's best for you. I'm currently on unemployment because I'm not able to work and am considering switching to disability.

I was diagnosed last June after being bedridden for 6 weeks. I relied on my friends because we were moving to a new state and my husband was working up there during the week. I think your friends would want to be there for you. I literally got all of my test results the night before we moved. I had hoped to start subbing in the spring (I teach elementary and special ed) but I'm just not well enough to do it yet. I also was recently diagnosed with an ulcer.

You need to take good care of yourself first and foremost and remember that you're not alone. This forum is incredible and no matter what questions you may have, someone here will have an answer or suggestion. Most of all, we're all here to support each other.

Loey

[hunter6009]

Hi Kimbalou! Nice to "meet" you! I was recently diagnosed myself and am also from the medical community. Heck, I work for the lab that runs the testing! I ran the panel I talk about to physicians on myself a couple of months ago and also had very high levels of all 4 tests. My GI doc still advised a biopsy as a baseline to see the extent of damage (not to confirm, which as you noted can be done via bloodtests alone). This made more sense for why I should move forward with a biopsy. He was able to see several markers with the naked eye for how damaged I was, and I really consider myself fairly asymptomatic so it just goes to show it can be worthwhile to do the biopsy. You only do it once (unless you are refractory but that is very rare). If you do decide to do the biospy, you must continue eating gluten until then or you can get false readings. I was actually quite thankful for this as I had about 6 weeks between my blood tests and my biopsy which allowed me to slowly process I had this disease, read up, hunt in the grocery, go to support group meetings, etc all while still feeling normal and eating as much gluten as I wanted. It gave me the chance to say goodbye to food! I know that might sound silly, but I ate at all my favorite restaurants (and quizzed them on gluten-free options for future reference), read 3 great books (gluten-free for dummies, the gluten-free Diet, and one other I cannot remember the name of right now!), went gluten-free shopping at the health food stores, and drove all my clients I call on (doctors and medical staff) nuts picking their brains about how they treat for this disease. It can certainly be overwhelming at first, but if you do go forward with a biopsy it allows you inevitably to slowly transition to acceptance.

I chose not to post on FB, although I've thought about it. I just told my closest friends and family what was going on. Most have been pretty supportive. I'm not keeping it a secret either and I occasionally "like" things that go to FB like "celiac awareness" or some such thing.

The thing I think you will realize the most from being in the medical community yourself already is just how behind many physicians are with this disease. If you are lucky enough to have someone in your area that specifically treats celiac disease (including your GI doc and FP) then consider yourself very lucky indeed! Thankfully I have a good GI doc, but my FP informed me today that she does not treat celiac disease and I probably need to find someone better suited. Not that she wouldn't, just that she was clueless about it. At least she was honest!

And lastly I, too, am going through the testing for my children. One is negative for the genes and thankfully will never have to be tested again in his lifetime. My other child is positive for the same gene I have, but negative right now for celiac. However we are on about 2 months of chronic diarrhea and on our way to a pediatric gastro next. Not fun to have a 6 year old scoped and I hate this for him. I pray he doesn't have it and that he never will. But if he does get it, I firmly believe it's all in how you look at it. Attitude is everything. I will remain upbeat and positive for myself, and most definitely for him. My husband puts this disease into perspective for me quite well. We have a close friend, in his mid 30's married with two small children who had some pain in his abdomen one day that turned out to be pancreatic cancer in it's final stages that has metastasized. I know he would give anything for his physician to tell him his cancer is treatable by diet alone. He is potentially facing death and his chances of medicine or surgery will likely be futile. So I quit my wallowing when I think of people like him and thank my lucky stars I have a disease I can still eat most of the things I love to eat and live a normal life b/c I caught it and was diagnosed! NO one else with a disease can say that.

So I am at the point where I'm tired of thinking about gluten and onto something else more exciting. We are headed to Disney for a surprise Xmas gift to our kids and I want to do my first triathalon next year! Plus, I use work to keep me busy and I'm also lucky I get to help spread the word about celiac disease into the medical field! I hope I can help at least one physician find a diagnosis for a one patient. One at a time!!!

Hang in there and this forum is great for venting and meeting new people! Trust me, there are so many more of us out there I didn't even realize!!!