Is It Just Me? But Some Of This Stuff Seems A Bit Overkill.

[jacklyn1981]

OK first off don't get offended cause after all I am newly diagnosed and having a hard time dealing with the life change of it all. But all this stuff about cross contaminating ones self by using the same cookware or thru toothpaste....do i really need to worry about this stuff...honestly. I dont know if i am just not as sensitive as others but I dont get violently sick when i eat gluten...i've been eating it all my life...yes i've had stomach problems but the vomiting and hospital stuff never applied to me. I just got my test results back yesterday...biopsy and blood work...i wasnt convinced that i had it till they both came back positive so i havent even started my diet yet....and you all are really freaking me out with this cross contamination stuff. Please advise...

Another question: I have been overweight all my life...not typical of a celiac...anyone else???

[Mango04]

This is my advice, because this is what works for me:

You have to find a balance. Don't obsess over CC or let the fear of gluten crumbs take over your life. Instead, remain aware of the dangers of cross contamination and do your absolute best to avoid any amount of gluten.

You probably can't tell that gluten makes you sick because you've never stopped eating it. If you completely eliminate it, and then reintroduce small amounts, you'll most likely become very aware of what those small amounts are actually doing your body.

Welcome to the board, btw

[tarnalberry]

It's not overkill, but it can certainly seem like that when you get started. Don't let it freak you out. Not everyone gets violently ill, not everyone ends up going to the hospital. Heck, not everyone even gets much in the way of symptoms. But what everyone with celiac disease does get is a chemical reaction that only requires one little speck of gluten to get started, and then becomes its own self-sustaining reaction, lasting about two weeks. That's why we care about toothpaste (you will swallow some), lipstick (you will lick your lips), crumbs (you will ingest them), and cross contamination (you will get some).

Will you ever be 100% gluten free? In this world, probably not. But you eliminate every last bit of gluten that you can knowingly do so, and you will minimize what you subject your body to.

You will likely (though it's not guaranteed) find that, once you are gluten-free for a while, you react more noticeably to gluten. After all, if you're feeling ill, feeling a little more sick isn't very noticeable. But if you feel healthy, feeling a little sick is.

[AndreaB]

Welcome to the forum Jacklyn!

I am one of those that doesn't have any obvious symptoms of gluten intolerance. To answer your question, small amounts of gluten will continue to cause problems for your intestines even if you don't have any obvious signs. Cross contamination is a real issue with many people who are this forum. My infant son is at least gluten sensitive. He was only 4 months old when I went on a gluten free diet without considering cross contamination etc. His eczema cleared up except for small flare ups and a few light spots that wouldn't go away. After I dropped Rice Dream which has a barley enzyme in it, and the rest of the house went gluten free...he cleared completely up. There was one situation where he broke out after cross contamination and I made sure it didn't happen again. Keep in mind that he was purely breastfeed, he was not on solids yet so any reaction came from what I ate. I had prepared my husband a sandwich on wheat bread and myself one on rice bread. I did not wash my hands in between. I would be very concerned about toothpaste since it is in your mouth. Whether you go gluten free with shampoo and soap is a personal decision. I have just started moving that direction to get the house completely gluten free.

There is a thread about celiacs and being overwieght. I don't know how to copy the links over but if no one else posts the link you can do a search on it. Hidden MSG could be another culprit. If you ate a lot of fast food or processed food you ingested a lot of it and it is know to cause weight gain.

Don't know if this helped at all but I just wanted to relay my experience. I have gluten intolerance but would not be surprised if it had developed into full blown celiac if my infant son had not broke out in his rash since my family had no obvious symptoms. Myself and my two oldest children are gluten intolerant and my oldest son has mild malabsorption. This was all found out through enterolab. My signature has all the information.

Email nisla@comcast.net and put request newbie survival kit in the subject line. She is Nini on this forum. Also TCA has started a topic about things newly diagnosed celiacs need to do. I don't rememer the exact title though. There are a lot of wonderful people here who can help guide you through the confusion of learning everything.

[jacklyn1981]

good advice guys. thanks its been very stressful preparing myself for this change...i've set tomorrow as my gluten free start date...any advice on what foods to stock up on?

also, what toothpastes are gluten free?

shampoos...makeup...etc.?

[Rachel--24]

Hi and welcome to the board.

First you should know that many Celiacs are overweight....in fact I believe more are overweight than underweight. It is a misconception that Celiacs are all thin and malnourished looking. Just because you dont experience severe symptoms doesnt mean that damage isnt occurring....obviously with a positive biopsy you do have damage. Your symptoms would likely have progressed had you not been diagnosed.

Yes, cross contamination is serious...it will cause the same damage if you are not careful to avoid even the smallest amounts of gluten. A little here and there can add up to alot of damage. If your immune system is constantly reacting to gluten you can eventually suffer more serious consequences such as auto immune diseases, osteoporosis, cancer, etc.

This board is a great resource especially if you're newly diagnosed. It may seem overwhelming at first but it does get much easier.

By the way most toothpastes are gluten-free...you just need to learn which are safe and which ones to avoid.

Your reactions to gluten may become more noticeable once you have avoided it for a period of time.

EDIT: Ooops...didnt mean to be repititious....I guess we were all typing at the same time.

[jacklyn1981]

Thanks everyone for your replies...its so nice to talk to others that have this. My family and friends had never even heard of Celiac till i got diagnosed...its comforting to talk to others.

What was it like for you all?

I live in a small town in the south where its all biscuits and gravy...nobody understands!!!

Once i start this gluten free diet...if i do accidently eat gluten will my reactions to it become stronger?

[Ursa Major]

Hi Jacklyn, and welcome to this board.

You've gotten great advice this far. By the way, I am one of those overweight celiacs, and kept gaining and gaining. I've finally started losing weight when I went gluten-free. Mind you, any starch will make me gain weight, which seems to be common with overweight celiacs.

A few more things you need to be aware of: You will absolutely need a new toaster, if you're planning on eating gluten-free bread. It isn't possible to clean your old toaster well enough to be used without contaminating your bread with gluten. The same applies to plastic strainers that have been used for gluteny pasta, wooden cutting boards and wooden cooking spoons. All those are common sources of cross-contamination.

Another thing is, that you really can't safely bake with regular flour any more. I tried, and baked my husband a Valentines Day cake, and was sick for several days after, just from breathing in the flour dust that got in the air! So, nobody is allowed to bake in my kitchen, unless it's with non-gluten ingredients (which is a little better, even though I can't tolerate them, either).

It will all seem hard at first, but once you get the hang of it will get easier and second nature. And do get the starter kit from Nini, you'll need it!

And yes, your reactions might be a lot more obvious after being gluten-free for a while, and may actually be pretty bad. But not necessarily, everybody is different.

[Rachel--24]

Once i start this gluten free diet...if i do accidently eat gluten will my reactions to it become stronger?

They may become stronger....this does happen to alot of people. Its mainly because your body has been dealing with the gluten for a long time...its always in a reactive state and so your body has adapted to this. Once you eliminate what is essentially "poison" to your body....reintroducing it can cause noticeable reactions which can seem more dramatic than what you experienced previously. Its your body telling you that it does not like gluten.

[Daxin]

I've fopund that my reactions to being "glutened" have become stronger after going gluten-free over a month ago. It was an accident, but I knew within the hour.

[TCA]

I'm in the south too and gravy and biscuits was my FAVORITE food, but guess what, I STILL HAVE THEM!!!!! Took me a while to figure it all out, but I found Cause You're Special Biscuit mix and have biscuits all the time. The gravy can be made with Rice flour (or other) instead of regular. I use Authentic foods brand. Bob's Red Mill is easier to get, but grainy. Both of these can be ordered from Glutenfreemall.com. I order Cause You're special brand from glutenfreegourmet since it's cheaper there. Good luck and let me know if you need help with other southern dishes. I've even made chicken and dumplings with the biscuit mix. Sooooo good.

Here's the thread I started. Hopefully other's can share their ideas here too. Open Original Shared Link

As for reactions getting stronger. I didn't think I could possibly have celiac, but went gluten-free for my nursing daughter. After about 3 mos I started noticing about how much better I felt and my health was improving. Now if I get glutened I feel terrible. I get D and joint aches really bad and I never had D before. Now we know where the kids get it from!

Welcome to the board!

[jacklyn1981]

Is it worth paying $80 an hour to a dietitian who specializes in celiac...or should i be able to teach myself all i need to know?

[ajay]

I live in a small town in the south where its all biscuits and gravy...nobody understands!!!

Oh, honey, you have my sympathy!

Your challenge, besides trying to explain it to your family over and over and over again, may be getting gluten-free goodies. You'll probably be fine with meats & veggies (you're allowed to eat veggies in the south, right? ) but it's nice to have some "safe" cookies or breads or other yummies to keep you from feeling totally deprived. I suggest you order them (from the internet or suppliers) in bulk (they can be pricey!).

It may also help to check in the Meeting room section to see if there are others in your area. Sometimes you may be surprised: I found a store with all sorts of gluten free goodies in Lincoln, Nebraska!

This board is full of amazingly helpful folks-- ask anything, ask often!

[jacklyn1981]

Thanks Ajay...you are right...everyone has been so nice. This message board is becoming addictive.

I am so amazed about how many people..even those in the medical field are so uneducated about this disease. i spoke to a friend who is a dietitian and has been for 36yrs. and she claims she's only ever met 4 celiacs in her career! Bless her heart she tried to help but I stopped listening when she told me i could eat spaghetti

[tarnalberry]

Is it worth paying $80 an hour to a dietitian who specializes in celiac...or should i be able to teach myself all i need to know?

Depends. Do you feel that you're pretty food saavy? Before you knew about celiac disease, did you know what while bread was made from wheat flour, just not whole wheat flour? Do you feel that, if you have to, you can teach yourself how to read a food product label? Do you think that you can cook, and make adaptations to recipes if you have to? Are you aware that most Japanese food has soy sauce, or if you weren't, do you, now knowing that, know that you can't just order any ol' thing off a menu at a Japanese restaurant?

*I* don't think that a dietician is worth the money, but I cooked from scratch before I was dx'ed. I knew what went into my food, and had already made a shift to healthier cooking and knew how to adapt for people who had special considerations (like my husband's dislike for many foods, or a peanut allergy, or a friend being vegetarian, or my FIL being very-low fat).

But for someone who is not at home in a kitchen, doesn't know how to read a label, and lives off of prepackaged, wheat-based foods, and doesn't do regular research into these kinds of topics on their own, a dietician who knows a lot about celiac would be just the way to go. Of course, finding such a dietician may be a much harder challenge than your doctor would lead you to believe.

[Mango04]

Is it worth paying $80 an hour to a dietitian who specializes in celiac...or should i be able to teach myself all i need to know?

I think you can teach yourself. I've never heard of a dietitian who was tremdously helpful in terms of celiac disease. You might want to check out the books Gluten Free for Dummies and Dangerous Grains, and of course read a whole bunch of threads on this board.

[Rachel--24]

After being on this board for about a month my doctor sent me to a dietician who was very nice but honestly, I could have taught her about the diet. It was a waste of time for me.

Also, I was someone who had never read an ingredient label in my life, never cooked (other than mac & cheese), McDonalds was my favorite resteraunt and I never ate fresh fruit or veggies. I learned the diet from top to bottom in about a week just by reading and using this message board. If I can do it...I think *anyone* can.

[Fiddle-Faddle]

Welcome Jacklyn!

I also have very few obvious symptoms of being glutened, and I am overweight. When I stopped eating gluten, I lost 15 pounds without even trying (yay!).

While I am not freaking out about cross-contamination, and I am not throwing out my toaster or anything else in my kitchen, I am concerned about potential problems down the line with my immune system, as I have a couple of immune disorders already, and it does seem that gluten is implicated in some of the worse ones, such as rheumatois arthritis and lupus.

Oh--if you want to lose weight on a gluten-free diet, eat rice all you want--but be very careful of the gluten-free substitutes for bread, cake, pancakes, and cookies. They are WAY higher in fat and calories than the gluten-filled originals. I lost my weight having gluten-free substitutes maybe once a week. I had a ton of salads and fresh fruits, and grilled meats and rice.

The nice thing is, the addictive quality of gluten (like wanting to eat the entire bowl of chocolate chip cookie dough) disappears after 2 weeks off gluten, and when you eat the gluten-free substitutes, you won't be craving more and more. So it's actually easy to limit yourself to eating them only once a week.

[Rachel--24]

Jacklyn,

Just wanted to mention that as previously stated gluten is highly addictive so you may actually feel worse from withdrawl once you start the diet. That happened to me big time...but then again you can see what my diet was like from my previous post....so its not surprising. My body must have went into shock.

[jacklyn1981]

Thanks for the replies.

Like i said before...i am starting my new gluten free lifestyle tomorrow. I, like you, have never read labels before so i suspect i will spend a good 5 hours at the store tomorrow.

BTW...does anyone know if Ranch dressing is gluten free?

Thanks for the heads up Rachel ...on the withdrawl thing...am certain i will go thru it...how long does it last and what should i expect. I am such a wuss and have no will power...wish me luck.

[Mango04]

Some ranch dressings are gluten-free. It depends on the particular brand you are buying. You need to read each and every label. It can be daunting at first but you'll get used to it. On celiac.com there's a list of safe and forbidden ingredients. You might want to print that out and take it with you to the store. I personally think it's MUCH easier to shop at health food stores. There's not so many ingredients to scrutinize on each product. Ironically, you'll also find more gluten-free "junk food" at a health food store, such as cookies, baking mixes etc.

[Fiddle-Faddle]

Withdrawal for me was only 2 weeks. I ate a lot of dark chocolate chips and Fritos (they're allowed!), and drank a lot of herbal tea. No, I didn't eat the chocolate and the Fritos together.

I find it fast and easy to make my own ranch dressing, and it is so much better than any of the botttled ones, it's not even funny.

Add 1/2 cup mayonnaise to 1/4 sour cream or plain yogurt. Sprinkle with garlic powder, onion powder (NOT onion salt!), dill and parsley (dried is fine). Squeeze a lemon wedge into it, and add a little milk if you want it more liquid-y. If you like cheese, you can add alittle grated parmesan. If you like pepper--add that! Sometimes I add chopped cucumber.

This takes me about 3 minutes to make, and it doesn't have that metallic preservative taste that the bottled versions have. It lasts about 3 days--my kids dip their vegies in it!

[mouse]

I have to admit that when I first got diagnosed at age 62 that when I read about having my own toaster, that I certainly felt that was overkill and did not purchase one for a year. I ate toast very seldom and when I got sick I would attribute it to something else I ate. It is your decision as to what quality of life you want as you age. You sound not as old as me and so you have a wonderful opportunity to heal and enjoy your later years. For me, I am so glad that we did the traveling and everything before I became the "classic Celiac". I was also a large women and my whole life wanted to be a permanen size 12. ( I am 5' 8 1/2" tall). I now wear a size 8 and since my food allergies have hit the ceiling I fit into a six. Yes for almost 40 years I had IBS (no longer since gluten-free) on occasions and would occasionally get what I called the mini flu's where I would throw up and have D (can't spell that word). Like I said it is your decision, but if I knew years ago, I would have embraced this diet with all my heart. This not the retirement I planned for my husband and I. I mostly live in this home, only venturing out to the grocery store and doctor's. The only reason I am saying these things, is that I want you to realise that you have a wonderful opportunity to put control into your life and really enjoy the future years. If you look below my signature, most of these have been diagnosed since the Celiac 28 months ago. And I have to tell you that being gluten-free is a cinch compared to giving up (totally) soy, corn and dairy.

[jacklyn1981]

bless your heart Armetta ...thanks for your advice you are strong person.

does anyone else have GERD? will going gluten free help?

[dionnek]

Where in the south do you live? If you are near Atlanta, there are several local groups arond metro Atlanta that will give you great information. Also, Kroger and Publix have started carrying gluten free foods (in the organic section), but make sure it says GLUTEN FREE, not WHEAT FREE (wheat free can still have barely, oats, or rye). I'm new to this also (one month) and just found out that my lipsticks (Clinique) had gluten in them. Nutrogena seems to be a safe brand for makeup. Keep reading - I learn more everyday. It is a slow process (I've been told that it takes up to 2 years to start feeling better - like others have said, I've only felt worse since going gluten-free, but then again, I wasn't really gluten-free since I was using wheat filled lipstick!).