Recently Diagnosed

[Beppy8]

Hello Everyone,

 

I was just recently dianosed with Celiac.  I had been diagnosed several years okay with IBS-D following my gall bladder removal surgery.  I have managed my symptoms pretty good with the help of Welchol to control the diarrhea and not eating fatty foods.  A year ago I gave birth to my son and a few months later I noticed that my symptoms were getting worse (pain in the mornings going to the bathroom) and my anxiety was going through the roof.  I went back to my gastro doctor to renew my prescription and after some discussion he asked if I wanted to get tested for Celiac.  I said “sure”.  I figured the tests would come back negative but unfortunately, that was not the case.  The tests came back 99% positive for antibodies for Celiac or some crap like that.  My doctor said that with a test result such as that we didn’t really need to do the biopsy that he was pretty certain that I had Celiac.  I opted to go ahead and have the biopsy because if I was going to make a major life style change I wanted positive proof.  After the biopsy, in the recovery room, the doctor stated that he didn’t really see any damage but he took samples and we would find out as soon as the test results came in.  Well, apparently they found signs of damage because the biopsy came back positive.  To make a long story short, I know it’s too late now, but I have no idea what I need to do.  The doctor said that I need to stop eating gluten.  Okay, that tells me a lot.  I have been doing all this research on the Internet but it seems so overwhelming.  Between all the things that I have to look for in ANYTHING I plan on eating to the worry about cross-contamination I am so lost.  I’m seeing a nutritionist tomorrow but in the meantime I thought I would ask you kind folks.  What the hell am I supposed to do?  I have two young children at home, a three-year old and a one-year old.  How the heck am I supposed to eat completely gluten free, avoid cross contamination, and live a normal life?  Am I supposed to live in a bubble?  How important is avoiding cross contamination?  Is using the same peanut butter as my daughter really that bad?  Sorry if I’m rambling but I am overwhelmed and angry!

[kareng]

Don't double dip the Pb or margarine. It leaves obvious crumbs and some not so obvious ones.

Read the Newbie thread first.

https://www.celiac.com/forums/topic/91878-newbie-info-101/#entry896943

[cyclinglady]

Hang in there!  Take a deep breath!

 

You are lucky to have small children as they won't know what they are missing when you consider taking gluten out of your house.  We have a member with celiac disease who's a doctor.  She learned that it's really hard to have small children who were allowed to eat gluten at preschool and at the baby-sitter's.  She'd pick them up and they'd have crumbs and gluten all over them.  She'd get cross contaminated from kissing them.   So, the whole family went gluten free.    Make your entire house gluten free and you won't have to worry about cross contamination in your house.  Cook simple foods in large batches and freeze them for easy meals.  There are plenty of tips on how to cook.  

 

Both my husband and I can not have gluten.  My daughter can and I send her off with pre-packaged gluten goodies in her school lunches, but when she comes home, it's a gluten free house.  She must wash her hands as soon as she comes into the house!  I make only one exception -- buttered noodles made in a dedicated pot with a dedicated strainer with those items wash separately.  She's thirteen and has known the drill for sometime as my husband has been gluten-free her whole life!  

 

I'm allergic to milk, but I still allow it in the house.  But, when I was first diagnosed, ice cream was banned.  My husband just went out on errands to get a ice cream fix until I lost all cravings for it.  But, I can tell you gluten containing bread is not allowed!  Not even at my home parties.  My extended family doesn't even miss gluten.  My daughter requested a homemade chocolate mayonnaise gluten free cake for her birthday over a bakery bought (that her grandma kindly purchased last year for her) and that bakery was rated #1 in the county! 

 

You are going to go through a grieving process!  This is where the forum comes in.  It's so nice to get support from others.  Soon, you'll feel better (takes time) and having Celiac Disease won't be so bad.  

 

Next time you're at the store, pick up a box of Betty Crocker gluten-free Brownie mix.  It's a great place to start for gluten free baking and no one will know that it's gluten free (really)!  Chocolate always makes me feel good!

 

Hugs!  

[Beppy8]

Hang in there!  Take a deep breath!

 

You are lucky to have small children as they won't know what they are missing when you consider taking gluten out of your house.  We have a member with celiac disease who's a doctor.  She learned that it's really hard to have small children who were allowed to eat gluten at preschool and at the baby-sitter's.  She'd pick them up and they'd have crumbs and gluten all over them.  She'd get cross contaminated from kissing them.   So, the whole family went gluten free.    Make your entire house gluten free and you won't have to worry about cross contamination in your house.  Cook simple foods in large batches and freeze them for easy meals.  There are plenty of tips on how to cook.  

 

Both my husband and I can not have gluten.  My daughter can and I send her off with pre-packaged gluten goodies in her school lunches, but when she comes home, it's a gluten free house.  She must wash her hands as soon as she comes into the house!  I make only one exception -- buttered noodles made in a dedicated pot with a dedicated strainer with those items wash separately.  She's thirteen and has known the drill for sometime as my husband has been gluten-free her whole life!  

 

I'm allergic to milk, but I still allow it in the house.  But, when I was first diagnosed, ice cream was banned.  My husband just went out on errands to get a ice cream fix until I lost all cravings for it.  But, I can tell you gluten containing bread is not allowed!  Not even at my home parties.  My extended family doesn't even miss gluten.  My daughter requested a homemade chocolate mayonnaise gluten free cake for her birthday over a bakery bought (that her grandma kindly purchased last year for her) and that bakery was rated #1 in the county! 

 

You are going to go through a grieving process!  This is where the forum comes in.  It's so nice to get support from others.  Soon, you'll feel better (takes time) and having Celiac Disease won't be so bad.  

 

Next time you're at the store, pick up a box of Betty Crocker gluten-free Brownie mix.  It's a great place to start for gluten free baking and no one will know that it's gluten free (really)!  Chocolate always makes me feel good!

 

Hugs!  

Thank you so much for the information and the words of encouragement.  I am definitely in the denial stage right now bordering on grieving.  All I can think about is all the things I can't eat or can't do because of this.  I'm angry.  I love baking/cooking/eating and I love teaching my daughter.  I know I can teach her baking gluten free but I have so many memories of things my mother baked when I was a kid for the holidays and special occasions that it breaks my heart I can't have them anymore.  My husband is willing to go gluten free in the house but I don't think he truly understands the sacrifice that is going to be.  You are right that since my kids are so young they really won't know the difference and that is a good thing.  I didn't know though that I can get cross contaminated by kissing my children if they eat gluten.  Is it really that bad?  Is that really a worry I have to think about now?  I can't imagine that would cause that many problems.  That seems so strict and severe.  Does it really have to be that way?

[cyclinglady]

Ugh!  Those glutened covered slobbery adorable faces and tiny hands CAN make you sick! Imagine gluten on your walls, light switches.  Let's face it, gluten can be everywhere when kids are involved.   We wash our hands a lot.  Germie gel is great for germs, but it won't clean off sticky gluten residues.  I won't even touch food outside the house if my hands are not washed.  

 

As far as your husband goes, it's not a sacrifice.  He can get a sandwich at Subway for lunch.  Every guy I know loves steak and potatoes.  He'll never miss it at dinner or on the weekends.    My kid will even eat BLT's on gluten-free toast.  She wants a burrito?  I take it to Taco Bell on the way home from school.  Though she mostly asks for tacos at home made with corn tortillas.

 

Baking?  That was my passion (and still is).  I converted all my recipes to gluten free.  I have not mastered bread yet.  I suppose it's because I don't crave it anymore and when I was first diagnosed, I was exhausted.  Go buy some Pamela's gluten-free flour mix and bake your traditional Tollhouse chocolate chip cookies.  No one will be the wiser.  Bake and then freeze them so that you always have a supply of goodies on hand for any event.  Same goes for cupcakes.  Going to a party?  Eat first, and then bring a gluten free item and serve yourself first.  

 

Hubby needs to brush his teeth before kissing you if he's drinking beer.  He needs to wash his hands upon entering the house too if he's had gluten to snack on.

 

My symptom was anemia.  No tummy issues.  But I have a host of other issues (like osteoporosis and some fractures) and it's just not worth it to get cross contaminated.  

 

I chucked all my baking pans (tarts, bundts, etc.) and have been buying them up again for baking.  Use parchment paper as gluten free items tend to sick (Costco carries it).  

 

And yes, this Easter we are baking our "lamb" cake but it will be gluten free and I'll use a new cake mold.  The ancient family lamb mold has been put aside for another generation.

 

You will get through this!

[Cara in Boston]

After a few weeks of being gluten free and feeling so much better, hopefully you will realize that a celiac diagnosis is waaaaay better than "just" having IBS.  I didn't realize how much my symptoms were impeding on my social life until I felt better and could get out and do more things.  To me it is a blessing that I can "fix" this without medications, side effects, multiple doctor visits, etc.  At first it was hard, but the reward was so great.

 

My 8 year old son and I are gluten free, my older son and husband are not.  While I only cook gluten free in the house, we have bread and crackers and things for them that contain gluten and I am just careful to keep it all in one area.  We do have separate peanutbutter, jelly, butter, etc. but that is really no big deal (I keep sheets of colored sticker dots in the kitchen to mark the gluten-free items)

 

I also love to cook (which made the transition to the diet much easier) and still bake quite a bit.  I don't enjoy using the alternative flours, but do have success with some of the premade gluten-free flour blends.  Some of the better ones work almost the same in most of my recipes. (C4C at Williams Sonoma)

 

No one misses the gluten at home.  The thing we do miss is convenience - like just ordering pizzas when you get home late.  

 

Everyone in the family is eating healthier now that we are cooking more, reading more labels, etc.

 

Instead of focusing on what you can't eat, think about all the stuff you CAN enjoy:  meat, fresh vegetables, fruit, nuts, rice, quinoa, dairy, etc.

 

Get some books from the library to learn about it more and check out some cookbooks (I found Paleo cookbooks to be the most helpful.)

 

 

I would never trade feeling crappy again for even the best pizza (or donut, or biscuit, etc.)

 

You can do this.  We've been gluten-free for almost three years and now it is just how it is . . . a way of life.

 

 

Also -  I got cc'd from drinking from my son's water bottle.  Keep all your things separate.

[Beppy8]

After a few weeks of being gluten free and feeling so much better, hopefully you will realize that a celiac diagnosis is waaaaay better than "just" having IBS.  I didn't realize how much my symptoms were impeding on my social life until I felt better and could get out and do more things.  To me it is a blessing that I can "fix" this without medications, side effects, multiple doctor visits, etc.  At first it was hard, but the reward was so great.

 

My 8 year old son and I are gluten free, my older son and husband are not.  While I only cook gluten free in the house, we have bread and crackers and things for them that contain gluten and I am just careful to keep it all in one area.  We do have separate peanutbutter, jelly, butter, etc. but that is really no big deal (I keep sheets of colored sticker dots in the kitchen to mark the gluten-free items)

 

I also love to cook (which made the transition to the diet much easier) and still bake quite a bit.  I don't enjoy using the alternative flours, but do have success with some of the premade gluten-free flour blends.  Some of the better ones work almost the same in most of my recipes. (C4C at Williams Sonoma)

 

No one misses the gluten at home.  The thing we do miss is convenience - like just ordering pizzas when you get home late.  

 

Everyone in the family is eating healthier now that we are cooking more, reading more labels, etc.

 

Instead of focusing on what you can't eat, think about all the stuff you CAN enjoy:  meat, fresh vegetables, fruit, nuts, rice, quinoa, dairy, etc.

 

Get some books from the library to learn about it more and check out some cookbooks (I found Paleo cookbooks to be the most helpful.)

 

 

I would never trade feeling crappy again for even the best pizza (or donut, or biscuit, etc.)

 

You can do this.  We've been gluten-free for almost three years and now it is just how it is . . . a way of life.

 

 

Also -  I got cc'd from drinking from my son's water bottle.  Keep all your things separate.

Thank you for taking the time to reply.  I am hoping that is the case and hey, if I eat right then I will lose that baby weight.  Right?  That's a positive.  From where I stand it would seem that not being able to eat anything or go to events or dinner with friends and family will severely imped your social life more than symptoms would.  The symptoms I can manage/handle, navigating around what I can or can't eat or if I accidentally get glutened seems way harder.  Not to mention worrying about giving my babies kisses because they might have just eaten gluten.  I suppose I can manage having separate things in the kitchen like peanut butter, jelly, butter, etc. but do I really need to have separate cooking utensils and pots/pans?  Is that necessary?  That seems a little over the top.

[Beppy8]

After a few weeks of being gluten free and feeling so much better, hopefully you will realize that a celiac diagnosis is waaaaay better than "just" having IBS.  I didn't realize how much my symptoms were impeding on my social life until I felt better and could get out and do more things.  To me it is a blessing that I can "fix" this without medications, side effects, multiple doctor visits, etc.  At first it was hard, but the reward was so great.

 

My 8 year old son and I are gluten free, my older son and husband are not.  While I only cook gluten free in the house, we have bread and crackers and things for them that contain gluten and I am just careful to keep it all in one area.  We do have separate peanutbutter, jelly, butter, etc. but that is really no big deal (I keep sheets of colored sticker dots in the kitchen to mark the gluten-free items)

 

I also love to cook (which made the transition to the diet much easier) and still bake quite a bit.  I don't enjoy using the alternative flours, but do have success with some of the premade gluten-free flour blends.  Some of the better ones work almost the same in most of my recipes. (C4C at Williams Sonoma)

 

No one misses the gluten at home.  The thing we do miss is convenience - like just ordering pizzas when you get home late.  

 

Everyone in the family is eating healthier now that we are cooking more, reading more labels, etc.

 

Instead of focusing on what you can't eat, think about all the stuff you CAN enjoy:  meat, fresh vegetables, fruit, nuts, rice, quinoa, dairy, etc.

 

Get some books from the library to learn about it more and check out some cookbooks (I found Paleo cookbooks to be the most helpful.)

 

 

I would never trade feeling crappy again for even the best pizza (or donut, or biscuit, etc.)

 

You can do this.  We've been gluten-free for almost three years and now it is just how it is . . . a way of life.

 

 

Also -  I got cc'd from drinking from my son's water bottle.  Keep all your things separate.

One other question, when you say you got cross contaminated from your son's water bottle what exactly happens?  I don't have immediate symptoms, so to speak, so I guess I'm confused when people say they were CC.  Do they immediately feel horrible?  Have to run to the bathroom?  Is it really that bad?

[kareng]

.  I suppose I can manage having separate things in the kitchen like peanut butter, jelly, butter, etc. but do I really need to have separate cooking utensils and pots/pans?  Is that necessary?  That seems a little over the top.

 

 

Anything that washes well is fine to share.  You don't want to use a colander that was used for gluten pasta to rinse your grapes.  It is impossible to get the gluten out of every little hole.  Sponges used to wipe up bread crumbs will still have bread crumbs in them. That sort of thing.  

 

I bought duct tape in red- it comes in all kinds of fun prints and colors.  I put a piece of that on the top of my PB jar.  Makes things easier.  Squeeze jelly is great if the squeezer doesn't touch the bread with the top.  

[kareng]

One other question, when you say you got cross contaminated from your son's water bottle what exactly happens?  I don't have immediate symptoms, so to speak, so I guess I'm confused when people say they were CC.  Do they immediately feel horrible?  Have to run to the bathroom?  Is it really that bad?

 

 

If someone is eating gluten, they probably get some crumbs in their drink.  Symptoms can be different for each person.  Its usually not immediate as your body has to start the process of making antibodies and the antibodies have to have time to start attacking the intestines, giving you migraines, whatever it is.

[Beppy8]

Anything that washes well is fine to share.  You don't want to use a colander that was used for gluten pasta to rinse your grapes.  It is impossible to get the gluten out of every little hole.  Sponges used to wipe up bread crumbs will still have bread crumbs in them. That sort of thing.  

 

I bought duct tape in red- it comes in all kinds of fun prints and colors.  I put a piece of that on the top of my PB jar.  Makes things easier.  Squeeze jelly is great if the squeezer doesn't touch the bread with the top.  

Okay so I can't use things like wooden spoons/colanders that have touched gluten.  It seems like gluten is the hidden monster I have to try to avoid.  I didn't think it was that serious.  I thought if you just cut out gluten in foods then you would be fine.  I didn't know we really had to worry about the minuscule amount of gluten found on sponges/countertops/spoons.  I guess I need to do some shopping.  When you went gluten free did you cut it all out immediately or did you take a slow approach to it.  Tried to cut out as much as you could and made a slow transition to be totally gluten free?

[kareng]

Okay so I can't use things like wooden spoons/colanders that have touched gluten.  It seems like gluten is the hidden monster I have to try to avoid.  I didn't think it was that serious.  I thought if you just cut out gluten in foods then you would be fine.  I didn't know we really had to worry about the minuscule amount of gluten found on sponges/countertops/spoons.  I guess I need to do some shopping.  When you went gluten free did you cut it all out immediately or did you take a slow approach to it.  Tried to cut out as much as you could and made a slow transition to be totally gluten free?

I cut it all out.

Forgot one thing - we use a pink or purple sponge for gluten-free and a regular blue or green one for gluten. Gluten is a crumb issue in a kitchen. Also, if you bake with regular flour, be careful because it can take 24 hours for the flour to settle out of the air.

Have you read the Newbie thread in the Coping section?

[Cara in Boston]

Everyone's reaction time and symptoms are different.  When I have been "glutened" I didn't notice right away but a day or two later I start getting symptoms.  The obvious ones go away within days (GI symptoms) but I am left with lingering fatigue, brain fog, and joint pain for a week or two.  Also, (not to worry you more . . .) after being gluten free, your symptoms sometimes get worse when you accidentally have gluten and/or you can develop different symptoms.  I NEVER had joint pain before I was diagnosed and now it is my biggest clue when I have gluten.  You can also become more sensitive to smaller amounts the longer you are gluten free.  

 

It was VERY DIFFICULT to suddenly not be able to eat something you have been eating your whole life.  My husband was completely on board, but frequently just didn't think about things when making a sandwich or something.  When I finally told him to think about flour/crumbs/bread as poison (imagine handling rat poison in your kitchen) then he got it.  You would never make a meal on a surface that just came in contact with rat poison without making sure you cleaned it completely.  If you think of it as some harmless food that you simply can't eat, (like you are on a diet or something) it is hard.  It is poison to you.

 

When trying to figure out how strict we needed to be, our doctor's advice was, "it is different for everyone" . . . my son is more sensitive than I am.  He cannot eat out (even gluten-free choices on the menu) unless the cooks/staff REALLY know what they are doing.  For him we stick with 100% gluten-free places or places that understand cross contamination and have systems in place to keep you safe (California Pizza Kitchen, PF Changs)  I am a little more flexible. . . I can order grilled meats or salads in most places.  

 

You should be getting another blood test in 3-6 months.  That, and your symptoms (or lack of symptoms) should tell you if you are being careful enough.

 

You really have to just start the diet 100%.  Don't mess around with autoimmune reactions.  Celiacs have a higher probability of developing other autoimmune disorders while they continue to have reactions due to gluten.  (Once gluten free, the risk returns to that of the normal population)   Things that you can't "fix" with a diet change.  If the doctor told you that you had a heart condition and had to start mediation would you take a "gradual" approach?  Think of the gluten-free diet as your prescription . . .take it seriously.

 

About flour in your kitchen . . . when you cook with it, flour becomes airborne and eventually settles on every surface . . . every hanging pot and pan, every spoon in the crock on the counter, etc.  Once you clean everything (run it all through the dishwasher) you need to stop baking with flour unless you want to clean everything each time you use it.  

 

Another tricky spot is the toaster.  We just ended up buying a second toaster for gluten-free bread.  To hard to keep your food safe in a shared toaster.

[C-Girl]

Ditto what Cara in Boston said - everyone's reaction varies. I ate half a bag of cookies thinking they were the nearly identically labeled gluten free version and they were the regular kind, and I was tired for a day and had some diarrhea but was otherwise OK. Of course, the immune system was probably silently eating away at my small intestine, but it had been doing that for years before I ever had a symptom anyhow...

 

Some scientific studies say the immune system only reacts to the equivalent of a 1/4 slice of bread or more worth of gluten. Most of the people here would strongly disagree and say any little crumb can give a reaction. Obviously there will be a range of reactions and you will have to figure out the hard way where you lie.

 

I'd try to eliminate as much of the cross contamination as you can, don't put anything with gluten in it in your mouth - it will involve lots of label reading and generally being confused and annoyed while grocery shopping, but you will get into a habit of it. You'll just learn what is OK and what isn't, and get into a routine with food. You'll learn to be seriously annoying to waitstaff at restaurants, should you choose to go out to eat.

 

I'm not an expert, I've only been at this for four months, and I don't have children to worry about, but I don't really miss the gluten foods. My husband has been very supportive in banning all gluten from the house, he will eat gluten when he goes out, but I haven't noticed any effects from kissing (other than the ones you want).

 

First and foremost, DON'T PANIC. You have to eliminate gluten for your health, but you don't have to throw happiness out with it.