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Newly Diagnosed And A Little Overwhelmed


emmajac

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emmajac Newbie

HELP! I was diagnosed yesterday with Celiac sprue. An edoscopy biopsy and blood work confirm this diagnosis. I went to the GI doc yesterday expecting to hear that I had IBS. To my suprise, I got different news. I have been suffering for many years with symptoms but just dealt with them!

I went to the grocery store this morning and felt completely overwhelmed. I have an appointment tomorrow with a Registered Dietician. I am a little scared of such a big task...changing and learning a new diet for the rest of my life.

I am going to have my kids tested even though they are not symptomatic.

BTW, this is the first time I have posted on any forum...ever!

Thanks!


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happygirl Collaborator

Emmajac -

Welcome to the board .... this will be a great resource for you. Let us know what we can do to help!

mushroom Proficient

A lot of supermarkets publish on line a list of their gluten-free foods, some have lists available in the store. Some keep them all in one place, others will spread them throughout the store with like gluten-containing products. But best to start out just eating those foods that are naturally gluten free--you know, things like meat, fish, veggies, fruit, rice, plain nuts, etc. *Alwaysl* read the labels of anything that is processed, and do it every time because sometimes things change. Watch out for gluten in medications and supplements. Beware of gluten in lunchmeat, ham, store roasted chicken (there is often gluten in the seasoning) and in cheese and yogurt. That is the basic start-out list. Once you get used to that we will help you refine it.

Welcome to the forum and gluten-free eating.

Neroli

Tallforagirl Rookie
I went to the grocery store this morning and felt completely overwhelmed. I have an appointment tomorrow with a Registered Dietician. I am a little scared of such a big task...changing and learning a new diet for the rest of my life.

I am going to have my kids tested even though they are not symptomatic.

BTW, this is the first time I have posted on any forum...ever!

Thanks!

It does get easier, I promise. It takes time to get comfortable with it but you won't always feel like you do right now.

Make sure you get a list or make notes from your dietician appointment regarding which ingredients are okay and which are not and what you need to look for on labelling. Some things you may be suprised to know are okay for most celiacs: like "glucose syrup (wheat)" and most distilled alcoholic beverages (including whiskey) because the processing removes all the detectable gluten So it's as much about knowing what you can still eat as what you can't.

If your whole household is going gluten-free, then go through the pantry and fridge/freezer and throw out or give away any gluten containing foods. Then you'll have peace of mind knowing you can't make a mistake and eat something non-gluten-free, at least at home.

If you're the only one who's going gluten-free it's probably best to store foods seperately so you know what's what. You'll need to be careful about anything that may get contaminated with breadcrumbs (condiments, butter etc) Either you need a strict "no double dipping" policy, or get your own seperate condiments and label them gluten-free.

You'll also need to check that any medications or supplements you take are gluten-free - your pharmacist should be able to tell you.

BTW - the first time I posted on any forum was on here too! It's nice to know you're not alone.

ang1e0251 Contributor

All good advice. Someone once wrote that they wrote down the 10 basic meals they normally prepared and converted them to gluten-free. That is a good idea. It helps you see you really can adjust normal foods to meet your diet.

For example, spaghetti night. gluten-free pasta is available in most large groceries including Walmart, Kroger and Marsh's. You simply make your own sauce or buy packaged sauce and check the label. There are many that are gluten-free. Cheese is ok and meat also. If you want bread with the meal, you can buy or make gluten-free bread or I just toast corn tortillas. Sometimes I use tortilla chips too. Salad is good just make sure you check your dressing and leave off the croutons unless you make them from gluten-free bread. See? That wasn't so hard.

We have all had the deer in the headlights look in the store. You are not alone. Tears are not unusual. That's why I recommend just eating simple foods for about the first month. When you have the hang of that, then start adding new foods, one at a time. That way you can make sure they sit well with you and pick out the ones you don't like. Another good tip is to save part of the packaging from items you buy. Write on it the date you first tried it and your "revue"; hated it, it's OK, loved this one try another flavor. Then toss it in a drawer or box so you know how you felt about all the new things you'll be trying. Also if you have to send someone else to the store, you can give them the packaging so they buy the right product. After all, if you are intimidated shopping, imagine someone who doesn't normally do it.

It will get easier, I promise. Soon you will be an old hand at it and be giving us all good advice. This is the first site I posted to too. Good luck and keep us posted!

samcarter Contributor

One thing I have found very helpful: we shop at Kroger a lot, and often buy the store brands. If I have the UPC of the product, I can call Kroger, give them my zip codea and the UPC and they will tell me if that product has gluten in it or not. While they can't tell me what the "spices" or "seasonings" are, because those are often proprietary, they can tell me if it is gluten free or not.

Like another poster said, try sticking with foods that are naturally gluten free. Rice, plain meats, eggs, fruit. Sometimes dairy can cause problems, because a lot of celiacs have secondary lactose intolerance, because of the flattened villi. Once those grow back, sometimes the ability to digest lactose comes back too. So if you're rid of all gluten and still having issues, try cutting out dairy.

Oh! Soy sauce can often have wheat in it. I know for sure that LaChoy soy sauce is wheat free. If you're into soy sauce.

As for eating out, some find it easier--if you can--to avoid eating out while you get your kitchen and everything situated. If you can't avoid eating out, a lot of restaurants are online and/or have gluten free menus. I went to Red Robin with a friend, and they had a gluten free menu, it was so easy to order. I had a great meal. :)

It gets easier. I'm nine months in and it's easier. Remember that you may feel great immediately, then start to feel a little icky as you "detox", and sometimes it takes up to a year or two to feel completely "normal".

If you are all going gluten free, you may want to replace your pots and pans and cutting boards, which can harbor gluten. My family is not gluten free, so I got a new cutting board for myself, and use the old one for cutting bread only. I also have two colanders, one for gluten pasta and the other for anything non-gluten (rinsing vegetables and fruits, gluten-free pastas, and such).

GottaSki Mentor

WOW all great advice...thanks everyone :D

I am also newly diagnosed and busily trying to convert our kitchen. I am very fortunate...my husband, sons and I all share cooking and they are supportive as we learn what mom can and can't eat. We've taken the -- let's figure out how to convert what we normally eat to gluten-free. It hasn't been as tough as I thought, YET that hasn't made my missions to the grocery store any easier the past two weeks. It feels like another job right now, but I can see that we'll figure it out down the road. Can admit to being overwhelmed, scared, and frustrated by spending so much time in the grocery store to replace just a few items. Yet I am so very happy to finally have a diagnosis and know that the cure is in my power.

We have three children and a grand-baby that will be tested for celiac in the coming weeks -- toughest on the teens as naturally they are willing to help Mom with the change, but can not imagine not eating gluten themselves. We have decided to wait until after spring break to test them -- 1) to give them time to get used to the idea that they MAY or MAY NOT have celiac and 2) give me time to convert our kitchen and become used to this diet for myself first.

I need to make an appt with the dietician -- been making a list of foods/condiments that confuse me...one thing that is extremely helpful is searching this site when in doubt...just last night i didn't think i could eat the johnsonville brats i had defrosted for dinner, so i searched johnsonville brat and was pleasantly surprised to find several posts that johnsonville has good gluten free practices and that other celiacs were eating them...dinner seemed almost normal last night.


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emmajac Newbie

I will be forever thankful for this site. When I feel I'm at my wits end..I can read that someone else feels or has felt the same exact way I do. Then you all give great "I've been there, done that" advise! Thanks! :)

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    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
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