Where Do I Start?

[amyreneeking]

Hi, my name is Amy and I was just diagnosed last week -- the day I started a new job! I am having a hard time coping with this. I have a DH and DS and DD -- I have a hard time figuring out what's for dinner without celiac! Any suggestions on where I start? I have been looking on the internet some, but I have found conflicting info and don't know what to believe. Any advice would be appreciated!

Thanks,

Amy

[happygirl]

Amy,

Welcome to the board! You have certainly come to the right place for information and support. You will find this site provides much more accurate and useful information than many doctors and nutritionists. Just remember that no question is too strange, silly, or gross! We've all been there and are happy to help.

Many people on this board have families and cook gluten free for the whole family....we find it much easier to cook one meal than cooking two separate ones! A lot of recipes are easily modified by finding a "safe" brand or using a flour substitute. Some people choose to buy a lot of "speciality" gluten free items, some choose to just modify what they do now, and some people rarely buy gluten free items.

There is a list on celiac.com of forbidden ingredients. It is very long, but you will find, in general, that there is a standard set of 'forbidden' ingredients that are on most items.

There are lots of gluten free pastas out there, but many are icky tasting! I have tried a ton. The popular favorite on this board is "Tinkyada" brand rice pasta. It comes in all shapes/types...spag, shells, elbows, spirals, etc. You can find in some health food stores, some grocery stores, or order online.

McCormick's seasonings and mixes are usually very good about listing their ingredients very clearly; they do not hide wheat or gluten sources. Although I have other intolerances, I used to do a lot of their products.... tacos, enchiladas, fajitas....then just substitute corn tortillas (sometimes for both of us, or sometimes hubby would want the flour torts). We do spaghetti a lot, too.

Be careful of soy sauces, or anything that has soy sauce in it. Although soy itself is safe for Celiacs, soy sauce almost always has wheat. But, some of the La Choy varieties and San-J both have gluten free versions. I prefer the San-J.

Even though many condiments/mayos/dips/butter are safe, they need to be "non-contaminated." Cross contamination is a big thing for Celiacs. The ingredients themselves are safe, but if the butter in a container has been dipped in by a knife that has touched any bread or gluten containing food, then there are crumbs in the butter, and that butter is now NOT SAFE. We have separate mayos, butters, etc in our house that are labeled. My husband still eats sandwiches, etc., so he uses his jar for that. Everything else that is joint cooked comes out of a clean container. I know that seems crazy, but gluten is gluten is gluten....no matter how it got into our bodies, whether purposefully or accidentally. 100% gluten-free really means 100% gluten-free!

Cokes, Pepsis, etc are safe. There are some sodas out there that are not, but the regular group (coke, sprite, diet coke/pepsi, dr. pepper) are all safe.

I'm sure others will pipe in. There are surprisingly a lot of brands that are 'normally' gluten free!

I hope this helps. I know it is a hard diagnosis...I was super sick and dx during graduate school. Hopefully, this board will get you started and help you along the way. Let us know what we can do! Best of luck.

Laura

[gfp]

Hi, my name is Amy and I was just diagnosed last week -- the day I started a new job! I am having a hard time coping with this. I have a DH and DS and DD -- I have a hard time figuring out what's for dinner without celiac! Any suggestions on where I start? I have been looking on the internet some, but I have found conflicting info and don't know what to believe. Any advice would be appreciated!

Thanks,

Amy

Amy Lauraj has given you some excellent start info.

The best thing I can say is beleive the most paranoid and then work from there!

Being gluten-free is a lot like riding a bike ... when you have never ridden one it seems horribly complicated and night impossible but when you have been riding one for years its second nature.

In the learning phase I suggest stabilizers (training wheels). That is don't eat outside your kitchen unless you can't help it and only use fresh prepared foods you make yourself... then the list is MUCH shorter....

Expect to make an odd mistake, we all do but as your proficiency increases you will sail through the stuff you find hard right now.

The hardest part is the first part.... because your system is at its weakest and your knowledge at its lowest.

As you get better and your knowledge increases naturally you will find it physically easier on you and mentally easier.

look up cross contamination and hidden gluten on this forum ....if you think its paranoid there is no harm in trying and when you are both stronger and more knowledgeable you can branch out more.

Lots of people debate distilled alcohol and gluten in cosmetics ... I honestly think the jury is out and my personal motto is "when in doubt, leave it out"

Lastly this place is great because even though we don't all agree all the time on these issues you will get great support.

Lastly, if you have a spouse or someone close to help then USE THEM... get them onboard for the hard times when you make a mistake or get tired of the whole thing.

[Guhlia]

Amy, you've recieved some great advice. The only thing I'd like to add to that is that a good gluten free cookbook will make mealtimes easier. Many things are naturally gluten free, but we all like to have our glutenous goodies sometimes. I recommend the Incredible Edible Gluten Free Food for Kids (not just for kids) by Sheri L. Sanderson and any of the Gluten Free Gourmet books by Bette Hagman. I found that the gluten free cookbooks really turned my life around. I used to always feel sorry for myself because I thought the gluten free food was horrible tasting, now I have excellent recipes for pizza, muffins, bread, etc.

Please remember that you may not feel better right away. When you do start feeling better you may have good days and bad days. Don't be too hard on yourself if you make mistakes in the beginning, we've all done it. Eventually the mistakes will become few and far between.

The beginning is the hardest part. Don't forget to lean on us and lean on the people who love you. We, on this board, have all been where you are right now. It gets better! Perhaps you would benefit from reading "Gluten Free for Dummies". It's one of the yellow dummies books and has a lot of good information in it. You can get it on amazon .com along with all the cookbooks.

One more thing, if you MUST eat out in the beginning (not recommended), get yourself a set of Triumph dining cards! They'll lessen your risk of having a bad experience.

[amyreneeking]

Amy here,

Wow! Thanks, guys! I was suprised at the info posted already -- really appreciate it!

The crazy thing about my diagnosis is that I am not having celiac symptoms. I had my stomach scoped because I was having trouble swallowing -- they suspected scar tissue from reflux. Didn't find that, but found "active inflammation" in my duodenum. So I had bloodwork and my tTG was 38. My worry is that I will make mistakes and not know it, since I'm not having symptoms, but still be damaging my body. I guess I will have to see after I switch my diet over completely if certain things go away, like migraines -- maybe I'm having symptoms, just not the 'normal' ones. Thanks so much again. I have a meeting with a dietician next week, but I was having a hard time even coming up with questions for her I was so overwhelmed.

Amy

[Ursa Major]

Amy, I want to add that having inflammation, and a high tTg could also mean that you're dairy or soy intolerant, rather than gluten (or, actually, it could be gluten and dairy, or all three). Because all of these things can cause flattened villi and inflammation, and the symptoms would be quite similar, too.

There are many people with celiac disease who don't have gastrointestinal symptoms, but rather things like anemia, depression, brain fog, achy joints, weight gain (or weight loss), constipation (rather than the expected diarrhea), gas, bloating, neurological symptoms like burning, numbness, rashes etc. Because celiac disease causes malnutrition (which of course includes vitamin and mineral deficiencies), your whole body will be affected.

You might be surprised what might improve on a gluten-free diet! You'll find out about symptoms you had, which you'd never suspect had anything to do with the food you eat.

[jayhawkmom]

I had my stomach scoped because I was having trouble swallowing -- they suspected scar tissue from reflux.

That's really interesting!! I had the scope done due to my daughter's dx, and questionable blood results. I often have trouble swallowing, and when I woke up, the first thing they told me was that I have severe scarring from reflux, and insisted that I take Prevacid daily. I had no idea I had reflux, but I DO have Celiac Symptoms.

How crazy is that????

I had inflammation of the duodenal bulb, but no further. I also had a severely weakened LES. =(

I apologize, I don't have a lot of advice, I just found it interesting that we are kind of in the same predicament. Only, my tTg was "normal" while my IgGAb's were off the charts. Still no clue why.

Anyhow, I agree that Tinkyada pasta is wonderful. And, if you feel the need for sweets (as I do) - Kinnikinnick makes some yummies!! =)

[2kids4me]

I guess I will have to see after I switch my diet over completely if certain things go away, like migraines -- maybe I'm having symptoms, just not the 'normal' ones.

I second all the other posters. Welcome to the world of gluten-free.. it is daunting initially. I often felt lost in the grocery store when I first started and found myself near tears as every soup I checked had gluten. Had some old ladies wondering about my sanity when I found Campbels chicken and rice soup was gluten-free - I let out a "yipee!"... then I also found that Campbells Healthy Request clam chowder was gluten-free.. amnd another squeal of delight

actually migraines are on the list of possible symptoms... I hope the gluten-free diet helps, they can be debilitating.

My daughter would get migraines so bad she would stagger down the hall holding the wall and closing her eyes.

Sicne we went gluten-free - not one migraine... occasional headaches but "normal" in the sense they were from being overtired or getting a cold. She would rate her previous headaches at 10 on a scale of 1 to 10... now the worst has been a 4.

Welcome, come by and vist often.

For my own sanity we all went gluten-free, it was too stressful trying to cook this pasta fopr DH and me and gluten-free for kids... the only thing allowed in the house is gluten waffles and bread for DH. We have a separate toaster for that. ....all baking, cooking, etc using any mixing bowl, pot is all gluten-free.

Start off slow - as one poster suggested go for natural gluten-free meals - chicken, fish roasts, mashed potatoes, rice, frozen or fresh veges, fruit, ... Salads ( but do check the salad dressing for gluten). Vanilla ice cream is usually safe - Chapmans is a brand I use.

Once you get used to the brands and what to look for - it does get easier. I made mistakes in the beginning and you just say oops and move on, its part of the learning curve. So you have to promise not to be too hard on yourself

a most important food - caramilk, skittles, M & M 's are gluten-free - just to name few.

[happygirl]

Amy,

Just to warn you, very few dieticians are fully versed in Celiac-world. Usually the main reason that they are knowledgable is if they have other (educated!) patients who have taught them. My appointment was horrible, left me in tears, because she was clueless and presented MISINFORMATION. How frustrating.

So whatever she doesn't answer....we are here for ya!

Tell us what you want to cook, if you are looking for ideas. We'll tell ya how (most importantly, which mainstream and/or specialty brand). I'm happy others have helped.

My migraines have decreased in intensity...hopefully, yours will too.

One of the best books to read is Dr. Green's "Celiac Disease: A Hidden Epidemic" It came out this spring, I believe? (either late 2005 or early 2006). It has a ton of info, especially on related research and related symptoms/disorders. Dr. Green is at Columbia and is a leading researcher/physcian. Dr. Fassano (not involved with this book) is another great researcher/physcian at the University of Maryland at Baltimore. You will see their name on a lot of literature and often referenced here, just an FYI.

Happy this is helping, girl!

Laura

[GFBetsy]

Amy -

If you are looking for some good recipes, try the cookbook "Saving Dinner" by Leanne Ely - it's not a gluten-free cookbook on purpose, but many of the recipes are "naturally" gluten free . . . and they are all delicious. Your local library may have a copy, and if not, you can request one.

Also, there are a lot of dinner recipes on www.eatingglutenfree.com. Also dessert recipes that your family will never care are gluten free.

One thing you might want to note is that your children have about a 10% chance of having celiac because you have it . .. so you may want to have their bloodwork done, as well.

Last note: One of my aunts also had problems swallowing until she went gluten free. So that symptom could go away once you've been gluten-free for a while.

Good luck!

[tiredofdoctors]

Hi Amy -- Welcome to the board, and to the Wonderful World of Gluten-Free Living!!!!! I agree with the others . . . take it very slowly at first. I have only my DH at home, but he is also gluten-free. He does keep a few dinners "handy" to microwave just in case I'm not hungry, etc. We used to keep gluten-containing foods on a different shelf FAR below my gluten-free products, but now we only have one or two (his Doritos -- can't live without them), so we put them in a large Ziploc or something of that nature. I initially freeze all my gluten-free products for at least 24 hours, then I put them in Ball canning jars, label them and use a "food saver" accessory that seals the jars. That way I know that none of my products will be contaminated.

Once you start cooking gluten-free, you'll find things that are good, things that aren't. It's all an experiment, really. The Delphi list (I have a copy I can send to you on e-mail, if you'd like) is a compilation of all the information members have gathered with regard to gluten-free products. GFP made a VERY good point with regard to the cross contamination issue. Some aren't bothered at all, some are. My symptoms are neurological, so it's difficult for me to know when I've been "glutened"; therefore, I don't take any chances.

Make-up, face washes, etc. are a big deal for women if you wear them. I can give you more info on that, as well, if you need it. There are a LOT of other people who are far more knowledgeable than me -- they will help you greatly.

I think that you'll find that the people on here are intelligent, informed (and work to be that way), compassionate and VERY helpful. Just wanted to let you know, it gets easier . . . . .

Take care of you, Lynne

[mythreesuns]

Make-up, face washes, etc. are a big deal for women if you wear them. I can give you more info on that, as well, if you need it.

I personally would love to have more information about cosmetics/hygeine products. I don't want to hijack this thread, but I have been searching for what is and is not an ok ingredient for WEEKS to no avail.

And, of course, WELCOME, AMY!!!

This place has been a haven for me since going gluten-free. I hope you find that it's the same for you.

[myserenityprayer]

Welcome! It has only been about a month and a half since my diagnosis and going gluten free. I just recently stopped eating soy and I am also lactose intolerant which I am hoping with be short term. Everyone on here has been and continues to be so supportive and helpful. Its for others who can eat gluten with no problems to understand what we are going through. My friends and family are still learning. I have gotten some wonderful advice on here and have a learned a great deal from reading old posts.

I was really overwhelmed at first. My anxiety has eased an enormous amount over the past 2 weeks. I freaked out the first time I went into a "normal" supermarket. I was used to shopping at smaller organic markets or Trader Joes. I don't know if you have a Trader Joe's in your area but if you do I would recommend taking a trip there. I love it. They can provide you with a list of their gluten free products which is actually really long. They have great brown rice ziti and spagetti and great sauces. I have become quite the chef, having to prepare most of my meals. I absolutely love going out to dinner with friends and my boyfriend and was so sad to hear that I couldn't venture out and try new things without causing inconvieneces with the wait staff. I have learned that surprisingly, more people are patient and sensitive to allergies than I would have ever imagined and there are restaurants out there that provide gluten free menus. To be on the safe side, until you start feeling better physically and mentally to stick with homemade meals with tons of whole ingredients like fish, meats, and veggies. I haven't started to clean out my beauty products but know that is something I must do, as many have recommended that on this site. I would recommend you research and read as much as you can on Celiac disease and gluten intolerances.

Its amazing how much better I have felt after going gluten free and now soy free. I can actually think clearly. I don't have brain fog. I feel healthier. I'm starting to have a "normal" body shape- prior to going gluten free many people asked if I was pregnant because my stomach was always so bloated and swollen. (talk about humliating) I'm starting to get my energy back- last night I went on my treadmile for 45 minutes and actually broke a sweat without feeling like I was going to die. I too used to get awful migraines and now that I think about it I haven't had one in a month and a half. I am anemic so I make sure to eat likes of iron and really enjoy snacking on pumpkin seeds and have learned to love spinach. I just keep saying to myself, take one day at a time, learn all that you can, and never give up!! Welcome and keep your head up. You'll start feeling better overall soon enough.

ah, super typo. I meant to say "It's hard for those who can eat gluten to understand what we are going through"

sorry!!! i should really learn to proof read!

[shayesmom]

Hi, my name is Amy and I was just diagnosed last week -- the day I started a new job! I am having a hard time coping with this. I have a DH and DS and DD -- I have a hard time figuring out what's for dinner without celiac! Any suggestions on where I start? I have been looking on the internet some, but I have found conflicting info and don't know what to believe. Any advice would be appreciated!

Thanks,

Amy

Here's just a small sampling of the recipe sites available to you for gluten-free meals. I have found that the Paleo diet ones are absolutely awesome for those with dairy and gluten issues. And I was shocked at how easy and quick some of the recipes were....without sacrificing flavor or nutrition. The best thing to do in the beginning....keep it simple. Roast chicken or turkey breast with mashed potatoes or wild rice and a veggie, cabbage rolls, sirloin steaks, chicken salad (great to make fresh with leftover chicken, grapes, apples, celery and red onion), spaghetti and meatballs, chili, potato salad (as a side for lunch or dinner). Any baked, broiled or steamed meat is appropriate. Steamed veggies and rice, potato or even sweet potatoes as side dishes. My dd LOVES sweet potato fries. Their easy to make and very tasty. HTH

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[mellajane]

Hello Amy, Welcome indeed. This site has been awesome. The people you come in contact with and the advice you receive is so helpful I honestly only use this site and maybe company websites for my infromation. This disease is hard but I have been wheat/gluten free for almost two years. Its incredible the change it has had on my life. Before self daignosing myself; I was a Caterer you can only imagine how frequently I was sick. For me I have very extreme vomiiting and hot/cold sweats they are the majors...So two years later and life is so good. Yes food is hard to find but I love food and it will get easieras time goes by. It was very challenging for me in the begining. My boyfriend however does not eat the wheat free food. I make seperate portions. This has been hard because I have to be careful and not cross contaminate. I love cooking and baking it is pretty much a favorite hobby. Seriously it will all fall into place. Its alot of trial and error and taste testing alot of foods! Good luck stick with it.

Hi, my name is Amy and I was just diagnosed last week -- the day I started a new job! I am having a hard time coping with this. I have a DH and DS and DD -- I have a hard time figuring out what's for dinner without celiac! Any suggestions on where I start? I have been looking on the internet some, but I have found conflicting info and don't know what to believe. Any advice would be appreciated!

Thanks,

Amy

[amyreneeking]

Dear everyone,

I cannot express how grateful I am for all the wonderful info and precious words of encouragement!! Thank you, thank you so much!

I have another question -- does anyone know if Spring Valley brand (got at Wal-Mart) calcium chews are safe? I have googled it and tried to call them ("everybody's in a staff meeting -- call later") but no luck. One ingredient that seems suspicious to me is "hydrogenated starch hydrolysate".

On my dietician, thanks for the words of caution. I think she is going to be good. My dr. recommended her and said they have heard back from many of their celiac patients that she is very good. Her name is Beth Loiselle and I understand she has written a whole-foods cookbook. But I will go into the meeting with my grains of salt ready

On my stomach scope, my esophagus was narrowed so they stretched it. They said they didn't know why it was so, everything looked healthy and no visible reason for it. It will be interesting to see if gluten-free helps that.

Thanks for all the recipe sites - I can't wait to check them out. I had also thought of contacting Leanne Ely,as I am a fluttering Flybaby!! I don't have a Trader Joe's -- never heard of it. I live in Lexington, KY and we have a Good Foods co-op and a Wild Oats. Pretty good I guess for KY We also have a support group that I plan on attending. Heard the leader is very knowledgeable, although he recently had problems due to some kind of lip balm. I echo the one post I'd like to know more about the NON-food products with gluten -- how sly is that!?!

Again, thanks so much to everybody ((hugs))

Amy

[happygirl]

Amy,

Great news about your potential dietician! That is very encouraging. Make sure you post about it so that if others in your area join the board, and search for a dietician, they will know who to go to!

Laura

[Guhlia]

Amy, you said you had a Walmart nearby... That's great! The Walmart GV (Great Value) brand labels gluten free. I've found so many things there that are gluten free. Apparently they have a seperate factory for their glutenous stuff because other labels say "made in a factory with wheat". Happy shopping! I've found this to be the easiest mainstream grocery store to do my shopping at.

[tiredofdoctors]

Hey Amy! I'm from Louisville -- my daughter and son-in-law are students at U of K. The dietician I have here is EXCELLENT -- she knows SO MUCH about Celiac. If you strike out in Lexington, drive on over for an hour, and see this lady.

I agree with you about the health food stores . . . I have found that even though we have a competitive market here, with SEVERAL different health food stores, we still are lacking in variety when it comes to gluten-free products. Jen in Indianapolis has a MUCH better selection than we do, even.

I'm going to the conference in Columbus, OH so that I can get some more information, and to sample and purchase the gluten-free foods that we can't get here. It may be worth looking into for you.

I'm in Lexington fairly often . . . I'll look you up if you'd like!

Lynne

[gfp]

Amy here,

Wow! Thanks, guys! I was suprised at the info posted already -- really appreciate it!

The crazy thing about my diagnosis is that I am not having celiac symptoms. I had my stomach scoped because I was having trouble swallowing -- they suspected scar tissue from reflux. Didn't find that, but found "active inflammation" in my duodenum. So I had bloodwork and my tTG was 38. My worry is that I will make mistakes and not know it, since I'm not having symptoms, but still be damaging my body. I guess I will have to see after I switch my diet over completely if certain things go away, like migraines -- maybe I'm having symptoms, just not the 'normal' ones. Thanks so much again. I have a meeting with a dietician next week, but I was having a hard time even coming up with questions for her I was so overwhelmed.

Amy

Amy,

I think you are probably correct that you have "other" symptoms but don't realise it.

The whole thing has been developing your whole life so all the effects are incremental.

I can't promise but I think if you go 100% gluten-free for a few months you will FEEL different and you will also learn how to spot that FEELING. (I really wish i could stick that feeling in a jar and give it you but I can't you have to feel it for yourself)

My gastro problems always come AFTER my neuro and other symptoms and by the time my guts explode I am already pretty sure ...

Some things to be aware of...

A normal adult has diarrea less than 5 times a year. Nursing mothers and people in contact with babies a little more often but certainly well under 10 times a year ... so any more than 5 times a year is not normal.

My migranes have almost completely dissapeared from 2-3 a month lasting 2-3 days each to 2-3 a YEAR (and probably still due to accidental glutening)

I think you will be able to develop your own feeling... many of us experience what we call brain-fog... most of us assumed this was normal until we went 100% gluten-free.... you can't see it in yourself UNTIL you have an outside perspective.

In a way its a cruel irony not be asymptomatic but I honestly think you will learn to spot syptoms you never realised you had. Convincing the medical establishment might be another thing!

[amyreneeking]

That is so cool! I am a UK alum myself! I'd love it if you looked me up -- I live at Hamburg, right off the interstate!

Thanks so much,

Amy

Thanks, gfp, I really appreciate the insight! I promise to let all of you know about my dietician visit and the support group.

Thanks again,

Amy