Newly Diagnosed Celiac/uc Help!

[Maureen73]

Hi Everyone -- I am new to the message boards and am looking for some help/advice. I am a 32 year old mother of two (3 1/2n yrs and 3 months). I first became sick six months ago while I was pregnant. I have had severe D 10 - 12 times a day every day for the last six months (except when I was on a steroid for a few weeks). Three months ago I had a scope and my doctor diagnosed me with Ulcerative Colitis. I had D & was bleeding and not getting any better. They put me on Asacol which did nothing and made me feel even worse. Then they put me on a steriod which did help the D but the side effects were terrible. I was still passing blood. To make a long story short (sorry!) -- I started seeking alternative therapy because I didn't want to take the meds due to side effects, was feeling terrible and had a newborn and my toddler to take care of full time, and was desperate for other answers. I found a dietician who suggested I get tested for celiac and just found out this Tuesday that the tests were positive.

My question is -- can someone have Ulcerative Colitis AND Celiac? I'm hoping I was misdiagnosed and only have Celiac.

How long did it take you once you were diagnosed to start feeling better? I still am really sick and have not seen a huge change in the D. As soon as I found out I started eating gluten free.

I've read that you have to be careful about shampoo, makeup, lotions, etc -- is this true for everyone? It's so overwhelming to think that I have to be so diligent in making sure not only the food I eat is gluten free but the products I use too!?

How much gluten will make you sick? I do have to cook for my family. Will I get sick if I touch something with gluten in it?

Sorry this is so long -- I feel so helpless right now. I am a stay at home mom and my husband works long hours. I am so weak and tired and just want to start feeling better so I can start enjoying my new son & my poor daughter can stop watching dvds

Thanks so much for ANY advice you can give.

Maureen

[lovegrov]

Yes, you can have both celiac disease and the colitis but, of course, I can't tell if you do. If your celiac tests are positive, then there's almost no chance you don't have it. I know very little about colitis, so I can't help with that.

The probem with makeup , shampoo etc, is that there's a chance you can get it in your mouth. Obviously, your lipstick definitely needs to be gluten-free.

If you're doing all the cooking and everybody else in the house is still eating gluten at all the meals, you will almost certainly get gluten accidentally. You will not absorb it through your skin, but if you don't wash thoroughly every time you touch it, you will eventually get some in your mouth. Also, all your cooking surfaces and some utensils will be contaminated. Even if your children don't develop celiac, you need to try to move them away from gluten stuff for your own health. Or try to set up one place where you make sandwiches and clean that spot thoroughly when done.

All first-degree relatives should be tested for celiac disease (although not until two years old), even if they don't have symptoms. My 70-year-old father had no symptoms but was positive on every test.

The following link is a site with all kinds of files anbout getting started, decontaminating the kitchen, possible sources of contamination and even food lists. Scroll down some to see these topics.

Open Original Shared Link

richard

[jenvan]

Maureen- I am sorry for how you feel! My heart goes out to you...

As Richard said, you can have both. The first step is to go totally gluten free. And that means ZERO gluten--not even a smidge--b/c that is enough to make you have to 'start all over again.' Healing and recovery varies from person to person, but I would be hopeful that you will notice an improvement in the diarrhea quickly. You may not be totally gluten free yet. I thought I was and then had to change some of my products. You should check the following: shampoo/conditioner/body soap/any lotion you use/lipsticks/lip gloss and liner/chapsticks...anything that has a possibility of getting into your mouth. You need to be vigilant up front. You also need to think about the state of your kitchen at home. Possible areas for contamination--countertops (is there gluten in some form on them that could get into your food); cooking utensils and pots/pans, baking pans etc (are they free of baked on or baked in gluten--in some cases its better not to share at all. my husband has his own utensils and bowls for his gluten-containing food); items in the fridge where someone is double-dipping (ie. jam, butter, peanut butter). I'm sure this is overwhelming--it was for me! But after you make the initial changes, you just maintain them and it becomes easier.

How much gluten varies, but as they say "When in doubt, go without." Some individuals here will get sick upon touching or enhaling food such as flour dust, some are not quite that sensitive. You can monitor and see if actual touch bothers you. If you don't have DH, it may not. Touching does not bother me, just eating. And the longer I'm gluten-free, the more sensitive I find myself being.

Other tips--I would try and find a local support group if you can. If you need help finding one I can help...you can post your location here or e-mail me/send me a PM by clicking on my name.

Do you have a gluten-free food list? Just in case, I have put in the next post below and directions on how to get others. We are glad you are here! And take heart--you will feel better!

One last thing I will mention as a potential option for you... the SCD (Specific Carboyhydrate Diet). This is a special, highly-restrictive diet that has healed many with Crohn's, Colitis, IBD...and has helped many with Celiac as well (although it does not "cure" Celiac, it offers great health improvements to those who have been less responsive to the gluten-free diet alone). You can learn about the diet and the book that explains it here: Open Original Shared Link Also, there is a group of women here who have started the diet and had GREAT success with it. You can read their posts and ask questions here: Open Original Shared Link PS-You can read the reviews of this book at amazon here...they are all pretty amazing I thought... Open Original Shared Link

[jenvan]

Here is a favorite list of mine Kaiti posts--these companies will NOT hide any form of gluten in their foods--so if you ck the label and there is no gluten listed, it is okay. Not all companies are like this--some will hide gluten.

these are mainstream products that will not hide anything. The following labels will list wheat,rye,barley,oats on the label or they will be safe:

Aunt Nelly’s

Balance

Baskin Robbins

Ben&Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Dove

Edy’s

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman’s

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Snack

Kraft

Libby’s

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely’s

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain’s

Okay, food... Below are two gluten-free food lists I use that are helpful. The first you can get for free, from another listserv--delphi. Directions are below. The second is a list you can purchase--it is palm pilot software. I like it and keep it in my palm and have it when I'm out, shopping etc. You may or may not be interested in that...

To get the Delphi Forum gluten-free Food List, Go thru the following:

1) Go to the website, Open Original Shared Link

2) Click on "messages" or "start reading"

3) Select the folder "gluten-free Product List"

4) Click on the topic called "Downloadable files word"

5) Of the four options, choose the one in the upper right.

You may need to register (the basic version is free) in which case, just register first, then complete the steps above.

To view the Clan Thompson gluten-free Food Palm Software, go here: Open Original Shared Link

Go here to see an extensive list of gluten-free food vendor's websites: Open Original Shared Link Some of my favorites are www.Kinnikinnick.com (breads and baked goods), www.glutenfreepantry.com (mixes and skittle meals I like), www.food4celiacs.com (cool store out of milwaukee-tons of gluten-free food!).

[KaitiUSA]

Yep, you sure can have both. What Richard and Jen said I completely agree with. Jen's post with those lists will definitely help you out with food and products.

As far as products go, yes they need to be checked. Lipstick is an obvious. The thing with soaps is if you wash your hands and it has gluten then prepare food then your food is contaminated. You have to cross out ny avenue. Shampoos, makeups, soaps, lotions-all need to be checked.

You can cook regular food for your family but cook your separate, wash your hands before moving to your food, do not share the utensils between the two.

Touching gluten alone is usually ok...as long as you wash your hands and don't go touching anything after you do that could get into your mouth. I personally try not to touch it because I do notice a slight but not full blown reaction. I do know people who react to touching it though so if you do touch it just keep an eye out to see how you feel.

Any bit you put into your mouth will cause damage. Any amount is bad. If you are 99% gluten free but 1% not gluten free it would just be like not following the diet because the smallest bit causes damage.

As far as feeling better, I felt alot better after 3 months but was not really back to normal until after 8 months. Some people see their symptoms go away before that but for some it takes longer then that. It depends on damage done, age, etc.

[nettiebeads]

Sorry to hear you're having it so rough. You've come to the right place for help and support. I remember when I first had to go gluten-free - the constant checking of everything. It wasn't until I came here that I realized I was still probably being cross-contaminated. My wooden spoons were old, (pre-celiac disease) so I finally threw them out this past week. I've been much more careful and now I feel better than I have in a long time! The gluten-free is a way of life now, and will become second nature. Hang in there! With the kids you will have to be super vigilant in cleaning surface areas and washing your hands. No wood utensils or cutting surfaces - can't get them 100% clean. Do you have old teflon or iron pots and pans? Again, those can harbor gluten. You might want to try a multi-vitamin/mineral supplement. The malabsorption part of celiac disease can leave you anemic. And the diet needs to be higher in protein than normal (which I think is 60grams/day). Improvements don't happen over night, it takes awhile for the body to heal depending on the damage and how gluten-free you are able to maintain. Hope this helps some.

[Maureen73]

Thank you SO MUCH to all that posted so quickly. It really does feel better to know that others have gone through this and survived I do have a question -- does everyone have to be so careful with the gluten -- ie pots & pans, cross contamination, shampoo, etc.? Not that I am wanting to continue being so sick, but I was wondering if there are various degrees of gluten sensitivity???

I know I need to suck it up and stop "feeling sorry for myself" but I feel like I will never have a normal life again. How will I go out to dinner, go to friend's houses for get togethers, cook for my family, etc?

I also don't understand how I went for 32 years without having this full blown reaction (I've had minor stomach problems before -- D for a week or so every couple of years, but NOTHING like this). How do you suddenly become gluten intolerant? I'm assuming my pregnancy and the fact that I was under major stress (we were selling our existing house and are building a new house) caused it.....

Ugh, thanks for listening. This site has helped me immensely in my 1st week w/o gluten.

Maureen

[KaitiUSA]

Thank you SO MUCH to all that posted so quickly.  It really does feel better to know that others have gone through this and survived   I do have a question -- does everyone have to be so careful with the gluten -- ie pots & pans, cross contamination, shampoo, etc.?  Not that I am wanting to continue being so sick, but I was wondering if there are various degrees of gluten sensitivity??? 

I know I need to suck it up and stop "feeling sorry for myself" but I feel like I will never have a normal life again.  How will I go out to dinner, go to friend's houses for get togethers, cook for my family, etc? 

I also don't understand how I went for 32 years without having this full blown reaction (I've had minor stomach problems before -- D for a week or so every couple of years, but NOTHING like this).  How do you suddenly become gluten intolerant?  I'm assuming my pregnancy and the fact that I was under major stress (we were selling our existing house and are building a new house) caused it.....

Ugh, thanks for listening.  This site has helped me immensely in my 1st week w/o gluten.

Maureen

<{POST_SNAPBACK}>

Pregnancy,stress, and other things can cause celiac to activate.

Everyone has to be careful with products, cross contamination, etc. Some people may not get symptoms but they will still be doing damage. You can't judge anything by the symptoms. Any amount of gluten will give you damage. This is for all celiacs too.

[Rachel--24]

Thank you SO MUCH to all that posted so quickly.  It really does feel better to know that others have gone through this and survived   I do have a question -- does everyone have to be so careful with the gluten -- ie pots & pans, cross contamination, shampoo, etc.?  Not that I am wanting to continue being so sick, but I was wondering if there are various degrees of gluten sensitivity??? 

I know I need to suck it up and stop "feeling sorry for myself" but I feel like I will never have a normal life again.  How will I go out to dinner, go to friend's houses for get togethers, cook for my family, etc? 

I also don't understand how I went for 32 years without having this full blown reaction (I've had minor stomach problems before -- D for a week or so every couple of years, but NOTHING like this).  How do you suddenly become gluten intolerant?  I'm assuming my pregnancy and the fact that I was under major stress (we were selling our existing house and are building a new house) caused it.....

Ugh, thanks for listening.  This site has helped me immensely in my 1st week w/o gluten.

Maureen

<{POST_SNAPBACK}>

Maureen,

I went 31 years eating whatever I wanted and feeling good. Stress is what did me in....for the second time. I got Graves Disease back in 99 (same thing..having a house built) but luckily I was diagnosed after only 1 doctor visit so I didn't suffer from it like with this one. I think too much stress on the immune system just makes something *snap* and begins the autoimmune thing. Also..YES..its important to be careful with the non-food stuff as well. Thats actually how I found out I might have a problem with gluten...because I got VERY sick from using a new lotion which had wheat germ oil in it. I used the lotion for probably 1 week and I'm still not totally recovered from it. I lost 5 lbs in only 2 days and also lost alot of hair...not to mention all the other symptoms. I thought I was doing a good thing buying all organic products but they all contained wheat or oats...hairspray, shampoo...soap...everything. My health went downhill FAST...even though I was only eating meat, veggies and fish.

[tarnalberry]

I know I need to suck it up and stop "feeling sorry for myself" but I feel like I will never have a normal life again.  How will I go out to dinner, go to friend's houses for get togethers, cook for my family, etc? 

<{POST_SNAPBACK}>

You'll do those things the same way we do - however works best for you. I cook for friends and family, and just keep everything gluten-free (and casein-free too). Stir-fries, soups, stews, casseroles, barbaques, salads, and so forth needn't have gluten anyway. (Some folks still cook gluten-filled things; that's also an option, to cook two different meals that overlap to a greater or lesser extent.

You go out to dinner and go to friends' houses by some combination of asking questions, looking at labels, and bringing your own food.

It takes practice, patience, and vigilence. But you'll get there!

[Jnkmnky]

Well, on the bright side, it will eventually be "normal" for YOU! I know this feeling you're having. I had it when my youngest son was dx. I thought I couldn't do the whole gluten free thing because I wouldn't be able to order Pizza on nights when I was too tired to cook.... *Only people who don't understand HOW much you have to change your life will think I was being a horrible mom for thinking that!* I actually mourned the loss of not being able to raise my third child the way I'd raised the other two! So grief, resentment, shock, self-pity, and more are all normal responses to this dramatic life change. Here I am more than four years later and it's all totally normal day to day living for us. We have routines that are second nature, I know the foods he can eat and LIKES. Funny story, I have a friend who works at the deli counter at my local shopping store. One time when I was in the store and allowed the two older kids to get a cookie each from the samples at the bakery, the woman in the bakery dept. asked her why I never allowed my cute little boy to have a cookie too. She thought I was picking on him or being mean. My friend told her all about his Celiac disease and called me back. We had already gotten my youngest a snickers bar for his "cookie". The bakery lady was so relieved that I wasn't just a nasty, abusive mom! People notice these things! Apparently it had bothered her the past few times I'd been in the store. But anyway, it all becomes part of your life. It's just different than you thought it would be. But not a -bad- different. You can always go out to eat at Outback Steakhouse! They have a gluten free menu. Kinnikinnick breads are completely normal tasting. No one will even know just from looking that it's gluten free. They have good donuts too. We bring a donut with us to church on Sundays for the Celiac so he can have a donut after church with everyone else. You'll adjust. It won't always be awkward. Just think of this new challenge as good mental exercise keeping you young.

[Maureen73]

I do feel much better today -- I think I was just overwhelmed at the whole "celiac" lifestyle and all the things I need to change. I've mourned my pizza, hoagies, and tastycakes and am trying to move on

From what I've read -- I know my villi in the intestines need time to heal but is there anything in the meantime that I can do to stop the D??? Sorry to be so specific, but it's still happening at least 5 times per day.

Has anyone taken Immodium and does that help things or make it worse? What about these probiotics I've seen people talk about -- what are they? How about Fish Oil pills?? I'll try anything at this point

I've been taking vitamins but I'm wondering if I'm absorbing them. My original GI Doctor was not very helpful in educating me -- he basically was like "you've got ulcerative colitis & celiac sprue" -- "have a nice day". Sooo, I'm seeing a 2nd GI dr at the end of this month. I am going to ask about the B12 shots.

Thanks again for being so kind to respond to me. I really appreciate it -- I feel like I at least have a starting point.

Thanks again - Maureen

[judy05]

Thank you SO MUCH to all that posted so quickly.  It really does feel better to know that others have gone through this and survived   I do have a question -- does everyone have to be so careful with the gluten -- ie pots & pans, cross contamination, shampoo, etc.?  Not that I am wanting to continue being so sick, but I was wondering if there are various degrees of gluten sensitivity??? 

I know I need to suck it up and stop "feeling sorry for myself" but I feel like I will never have a normal life again.  How will I go out to dinner, go to friend's houses for get togethers, cook for my family, etc? 

I also don't understand how I went for 32 years without having this full blown reaction (I've had minor stomach problems before -- D for a week or so every couple of years, but NOTHING like this).  How do you suddenly become gluten intolerant?  I'm assuming my pregnancy and the fact that I was under major stress (we were selling our existing house and are building a new house) caused it.....

Ugh, thanks for listening.  This site has helped me immensely in my 1st week w/o gluten.

Consider yourself lucky, I went 61 years before I found out I had a problem with gluten. I suffered with acid reflux, migraines, constipation, allergies, and fibromyalgia. Mine was triggered by surgery that went bad. Bless you.

Maureen

<{POST_SNAPBACK}>

[celtichands]

I'm waiting for the results of my blood work to see if I have this disease. I've had problems with my intestines since I was 13 and was told it was ibs. I was diagnosed with hashimoto's disease last year also. The past 2 years have been nothing short of awful, lost my dad, lost my job, mother became sick with lymphoma and lost her two months ago, now I'm starting a new job, but really feel awful. I really think this what I have after reading about it. Only thing I'm not loosing weight, my stomach looks like I'm nine months pregnant from the bloat and my joints hurt and I'm very tired, go from not going to the bathroom to constantly going. Are these symptoms also? Hope you don't think I'm a whiner but I have so many questions.

Thanks

[hez]

Being new to the celiac way of life (found out in April), I can tell you that I have had the same feelings as you. I think it is perfectly normal to mourn the loss of gluten. It is a huge lifestyle change and it is okay to have a good cry. After wiping your tears take heart in knowing you are not alone. This board has been a great source of information for me. I look at the lifestyle change as taking baby steps because it was to overwhelming to me. First, I got rid of all gluten that was just too tempting to me. I am a mother of a 7 and almost 4 year old who still eat gluten (tests have been negative so far). Second, I did what was easy for me. Dinner in our house is gluten free. It was just to hard at the end of the day to try and fix two meals. I was exhausted! Recently, I have been buying new cosmetics, pans and utensils. I am still not feeling 100% yet but I have a few good days with a few more bad days. Hang in there!

[julie5914]

Celtichands - have you had an ANA test done or further tests for lupus and it's related diseases. Your joint pain is what concerns me here. Lupus is associated with the same gene as celiac. I hope you get results back soon. If they are negative, don't give up - look up your symptoms and keep going back to ask for the specific tests. It's your body. I have finally learned to listen to mine.

[skoki-mom]

Hi there, I'm new at this too. Like a week, to be exact! So far I've done the gluten-free diet but not thrown away any beauty products. Some of my stuff doesn't even have an ingredient label on it, I have no idea what's in it! And I feely admit that since I've been asymptomatic for almost 36 years, I fully intend to finish off my current bottle of shampoo because I'm just too flipping cheap to throw it all away. I understand the overwhelming nature of this. Seems I've had a year of loss as well.....my marriage has ended, I only get my kids half the time, I had to sell my dream house, go back to work full time, and now this! Honestly I didn't pay much attention to it (the + bloodwork) until the scope was done because I just had way too much going on to spend much time worrying about it, and since I always feel well, I wasn't too obsessed with it. The scope results came as no surprise and since I have a sibling with celiac disease I pretty much knew what I was in for. So far my "willpower" is holding up better than my bank account, I think I'm going to have to abstain more than substitute at least for now. I'm a mom of 2 kids too so I know how busy your life is. I hope you feel better soon and if you ever want to talk to another mom just e-mail me!

((hugs))