Just Diagnosed

[Lawspike]

I just received my biopsy results from my endoscopy and colonoscopy last Friday

My gastro called today, and despite my initial blood work for gluten sensitivity being negative (which I was informed is almost falsely negative 80% of the time) my biopsy came back positive. I am now the proud owner of some Celiac Disease. I have been misdiagnosed for almost 10 years, and am frustrated beyond belief.

I am nervous, overwhelmed and in need of some simple information and tools to help make this transition into a gluten/casin/wheat free diet.

All of the information I am finding is voluminous and overwhelming, and I am sure I just need to sit down and sort through it.. but I am not sure where or how to begin.

I went for additional blood work today - more sensitivity testing, I assume, and once the labs come in, I am sure I will have to go back to the doctor and he will fill me in and put me in touch with a nutritionist or something...

I am not looking forward to changing my life - and the life of my kids and husband, so as not to have to cook different meals for everyone, but I am looking forward to the possibility of feeling normal again. It has been some time now.

[LDJofDenver]

Most of us have a history like that, had it for 10 years or more and misdiagnosed with all kinds of other things. I was being treated for each individual symptom (a pill for this, a pill for that, an ointment for the skin, etc). I feel your pain!

It can be a little overwhelming at first. We've all been there. If you don't live alone and your household is not going to be entirely gluten free (mine is not, my husband eats wheat/gluten) you'll need your own cutting board, colander, toaster (I even got a new hand mixer because mine was old enough that I thought I'd never get all traces of gluten out of it). If you use teflon coated pans, you'll want to get one just for your gluten free dishes. Use stainless steel utensils, and not plastic.

Be aware that "wheat free" does not necessarily mean "gluten free" (it could still have barley in it, which is gluten). And that gluten is often a hidden ingredient (flavorings, colorings, etc.) and often shows up in products you'd never suspect (soy sauce, spices, licorice, ice cream). And that, yes, even toast crumbs can hurt you.

Now for some very handy accessories. There are grocery shopping guides out there to make your life WAY easier at the store. They list mainstream products (Kraft, Heinz, Kroger, Hormel, etc.) by category (soups, chips, dressings, spaghetti sauce, etc.)

Gluten-Free Grocery Shopping Guides:

Open Original Shared Link

Open Original Shared Link

There's another out that can also be downloaded to your PDA device, etc., by Clan Thompson.

I bought the Cecilia's guide, it was about $25 and worth every dollar. Put an end to standing in the aisle and reading packages for 20 minutes at a time!

For your favorite restaurants, go on an off-night, and go early so you can ask about food preparation and ingredients -- you'll likely find a couple good things you can order there, so your next trip won't be asking 20 questions. (There are restaurant guides out there, too.)

When invited to someone's house for dinner/cookout, etc., always bring a dish or two to contribute -- it will be happily received, and you'll always have something "safe" to eat if you end up being unsure about what else is served.

It will be a bit of a study for the first couple months, but once you get a handle on what's safe it won't be that big of a deal. And even though it may be a little trying at first, just remember that if you had to "get" something, at least what you've got is completely controlled by diet -- and that's not so bad.

[dream77]

What were your symptoms ?

[Switch2GF]

In a weird way, we can all say: Congrats on your diagnosis!

At least now you know what you have and how to treat it. Keep a positive attitude, because your life is changing for the better. You almost can't find a more healthy diet.

[lcarter]

At the very beginning it helps to remember "KISS" [Keep It Simple Stupid]. Don't panic, just don't eat any preprocessed food until you learn more what is safe and where to go that you can trust not to get glutened. To start off, buy every thing fresh and make it yourself with the simplest of seasoning. For instance, fry/grill/bake meat or fish with olive oil, salt and pepper, bake a potato or rice, steamed or baked veggies, make a salad with just olive oil and lemon juice as a dressing, then cut up some fresh fruit for desert. For breakfast there is always rice and egg [it's still one of my favorites!] or buy one of the new Chex gluten-free cereals with milk, if you are a partaker of dairy. After a while you can branch out to gluten-free breads, pancakes, waffles or many fancy concoctions, like apple crepes [yummo!]. Early on, when out with friends, if I didn't feel sure, I ordered a plain veggie salad and ask for the olive oil and lemon juice, then filled in with food once I got home. Just keep in mind that the simpler you make it the better. Soon, you will be indulging in all sorts of great gluten-free things and realize that this isn't so hard after-all. I started a special file on the computer where I compile gluten-free-DF recipes which I continually add to. There's a folder for each catagory...even a folder that I put all the notes from folks about good places to eat, what to order there, addresses, who to talk to, and email links. It has really been a great help! It is really over whelming at first, but it does get to be second nature with time. Good luck and remember all the members here are VERY helpful and full of great advice. You are not alone!

[Lawspike]

WOW! Thank you for the quick replies. I have already begun bookmarking websites, online shopping sites and when I return from vacation next week, I will be purchasing one or more of the recommended books!

As far as symptoms, I have an endocrynologist, gastroenterologist, dermatologist, internist, gynocologist... I am SO SICK OF ologists. After being lactose intolerant since birth, ten years of being diagnosed with IBS and given scripts for Bentyl and other various intestinal relaxers, creams for the DH on my head (which they told me was psoriasis), having suffered from Grave's Disease and most recently having massive stomach swelling issues, pain, bloating, bleeding (sorry TMI), severe joint swelling and sometimes locking or immobility, AND a whopping 22 l weight gain in less than a MONTH for NO obvious reason... I said ENOUGH IS ENOUGH. (I also had miscarriage and pre-term labor with both of my children - this was after being diagnosed with endometriosis and having had an ovary removed)

A friend suggested I might get tested for Celiac. I did some research and realized I was a TEXTBOOK case. They could have studied me in colleges.

I went to the gastro with a MASSIVE list of what I I have been going through - and he started testing from head to toe. I told him I was not leaving until he got to the bottom of this - and I in NO way wanted to e farmed out to any other doctors. SOMETHING was the UMBRELLA causing all of this, I just knew it in my heart.

He quickly shot me down with all negative antibody sensitivity tests. I have High blood proteins and VERY low iron, but that was it.

I just had my endo/colonoscopy this past Friday and low and behold... the dang CELIAC biopsy of my small intestine was POSITIVE. GRRR.. I guess since I had myself convinced I was dying from colon cancer - this alternative is far better. They just took about another gallon of blood today, searching for some more allergens/sensitivities, I suppose, and I am sure I will have the results in the next few days or so. Hope they are more precise than the initial lab work....

I am validated in the fact that I now know I am NOT NUTS, I am NOT imagining my symptoms, and now that there is a diagnosis, I can begin the healing! I SO look forward to the day that I wake up and feel *normal*.

I have a husband and 2 small children (6 and 4), and have no immediate intention on subjecting them to what dietary eliminations/restrictions I need to adhere to. I will have to bang the hubby over the head and make sure he knows the severity of mixing his and my pots and other things that I set aside. Since he hardly knows where anything in the kitchen is, except the fridge, I am sure it wont be that hard! LOL

I am encouraged to hear that there are readily available lists and such of restaurants, etc. I will most definitely abide by KISS, at least until I get more informed and have a better handle on hidden gluten/wheat/casin products, etc!

I look forward to poking around the various forums

Thanks, again!

[no-more-muffins]

Welcome to this great place. It is the best place to find other people who understand and have experience. First of all, it must be a relief to finally know what is wrong with you. And no, you aren 't crazy. All those doctors are though for not figuring out what was going on a long time ago.

I haven't been here long but I have gotten a lot of support and ideas from the people around here. My advice is: eat one day at a time. It can be really overwhelming when you think of all the things you can't eat. Just try to just figure out one day at a time and then you'll make it through. And remember it takes awhile to feel better (which really sucks). I am 4 weeks into the diet and I feel somewhat better but I am still nauseated a lot and still very tired. It takes 6-12 months to really feel better (so I hear) so give it time and thank heaven that you have a diagnosis.

[LDJofDenver]

This is a great place for advice and tips but, most of all, to communicate with so many others who REALLY know what you're talking about and what you've gone through!

Another tip to make life easier for you in the kitchen, since you are a "mixed" household. Paper plates, paper towels, wax paper, "your" cutting board, or regular plate -- if it's for you, it always goes down on one of those. It's just a quick and easy layer of protection from cross-contamination. It will become habit before you know it, even my husband does it now (for himself, and he is not gluten free!).

[Korwyn]

I just received my biopsy results from my endoscopy and colonoscopy last Friday

My gastro called today, and despite my initial blood work for gluten sensitivity being negative (which I was informed is almost falsely negative 80% of the time) my biopsy came back positive. I am now the proud owner of some Celiac Disease. I have been misdiagnosed for almost 10 years, and am frustrated beyond belief.

I am nervous, overwhelmed and in need of some simple information and tools to help make this transition into a gluten/casin/wheat free diet.

All of the information I am finding is voluminous and overwhelming, and I am sure I just need to sit down and sort through it.. but I am not sure where or how to begin.

I went for additional blood work today - more sensitivity testing, I assume, and once the labs come in, I am sure I will have to go back to the doctor and he will fill me in and put me in touch with a nutritionist or something...

I am not looking forward to changing my life - and the life of my kids and husband, so as not to have to cook different meals for everyone, but I am looking forward to the possibility of feeling normal again. It has been some time now.

Hi Lawspike,

Welcome to the club and welcome to healing

Six key books that I think every Celiac needs ( I have purchased all of these so this is a personal 'starter kit' recommendation ):

• Gluten-Free Quick & Easy: From Prep to Plate Without the Fuss - 200+ Recipes for People with Food Sensitivities
  
• Gluten-Free Cooking For Dummies (For Dummies (Cooking))
  
• Wheat-Free, Gluten-Free Cookbook for Kids and Busy Adults (The 2nd edition is not yet released, but 1st edition is wonderful
  
• 1,000 Gluten-Free Recipes
  
• The First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed
  
• Open Original Shared Link (aka: The Red Book)
  

Also check this list out (from the red book): Open Original Shared Link

Another thing that has been an incredible asset with my family and helping them (and me) understand more is a video: Unlocking the Mystery of Wheat and Gluten Intolerance

[ang1e0251]

Welcome! I'm glad you're on the road to good health. I don't object to bonking your DH over the head but it would be helpful to you if he went with you in future. Your gastro might send you to a nutritionist. It would be good to take your husband on that visit. She can explain to him as a professional how important it is to comply to your dietary needs. My husband has bread in the house and pasta but other than that my kitchen is gluten-free and we both eat that way, no matter who cooks. My recovery is a priority to my husband and we have made a pledge to each other to safeguard our health for each other.