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Newly Diagnosed And My Head's Spinning!

foolintherain

By foolintherain
in Coping with Celiac Disease

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foolintherain Newbie
foolintherain
Posted

Hi everyone! I've been lurking on this board for a few months now. Last August I had an endoscopy done because I had the feeling of a gas bubble stuck in my throat constantly for weeks on end and reflux medicine/Gas-X did nothing. They took a biopsy (I was unaware that they even did this), so I was pretty surprised when I got a call back saying that my biopsy indicated possible celiac disease. It took me a few months, but it was confirmed by a blood test.

I'm beside myself. I've had the diagnosis for about two weeks now, and I'm going to start the diet this coming weekend (had to have my last hurrah with Thansgiving). I'm frustrated. I was in a very traumatic car accident about 6 years ago, and ever since, I've felt off. I lost a hundred pounds and ended up underweight, suffered from low blood sugar, frequent diarrhea, and I plow through Pepto Bismal. Looking back, I've had most of the symptoms of celiac, but it has never been mentioned as a possibility to me. Everyone kept telling me it was stress from the accident, that it was all in my head. It's almost a relief to get a diagnosis!

My doc hasn't quite been helpful, and I have an appointment with the nutritionist tomorrow, but I have a few questions in the meantime.

I know I need new pots and pans. What about stuff that can go through the dishwasher? Is there still a risk of cross-contamination?

When I first start the gluten-free diet, how I know if I'm doing it right?

I have a night guard. Do I need a new one? Or can I sterilize my current one and get off any gluten particles?

Can I kiss my daughter after she's eaten, let's say, a piece of bread?

My doctor mentioned that some people with celiac disease need to cut out lactose when starting the diet. He didn't necessarily tell me to do it. Do I need to, even if it doesn't seem to be a problem?

Thanks in advance!

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GF Lover Rising Star
GF Lover
Posted

Hi Fool and Welcome to the Forum.

 

Ok, take a deep breath and stop your head.  

 

First read this: https://www.celiac.com/forums/topic/91878-newbie-info-101/.  Not sure about the night guard but someone will chime in about that.  No kissing anyone until they brush their teeth.  Cutting out Dairy usually helps at first because the tips of your villi are damaged therefore dairy will be hard to breakdown and digest.

 

You will get all the other information you need to know from the thread I gave you.  This is all quite doable.  I will leave you with one piece of advice.  Get used to reading labels.  Every label, every time.

 

You will be fine.  Ask as many questions as needed.  We will help you with this adjustment  :)

 

Colleen

tommysmommy Newbie
tommysmommy
Posted

Hey, this is a good thing! Yes, it is a hassle (especially at first when you are learning) but once you start feeling well again, it will all be worth it! There is a ton of great info on this site & on Facebook & twitter - those of us living the life tend to know better than our doctors!

I would suggest new posts & pans (particularly the porous ones like cookie sheets), ceramic places are probably of - plastic are not -but if you are sharing a kitchen with gluten eaters, having your own HANDS OFF plates & utensils might help. I read recently about a girl getting glutened from her retainer, I'd check with your doctor/dentist on that one. Kiss your daughter - just not on the lips! And ease of dairy, it helps!!

Gemini Experienced
Gemini
Posted

You do not need to replace pot and pans unless they are old and scratched......like Teflon or any non-stick. Stainless are fine as stainless is a very hard metal and they generally do not scratch like non-stick ones. Cast iron need to go unless they are coated and in good shape.  Anything with nooks and crannies or a porous surface needs to be replaced.  Wooden spoons, colanders that you strained spaghetti in definitely need new ones.

 

You do not have to have separate utensils or plates as these can be washed well and are not porous. Rinse well and run them through the dishwasher and you are good to go.  I am extremely sensitive and I can eat off of a plate that a gluten eater uses....well washed, of course!

 

We want you to be careful, not paranoid!   :)

 

Get ready to feel well again!

mommyof4 Apprentice
mommyof4
Posted

Hi and Welcome!

 

It can feel overwhelming at first with the lifestyle change...with time it becomes second nature, so hang in there.  I was diagnosed Celiac 2 years ago...it really does get easier.  I am married with 4 kids...one of my children also has Celiac Disease, but the rest of the family doesn't.  Here are a couple great tips people gave me that helped...

 

1. Buy a "Gluten-Free Shopping Guide"...I bought mine on Amazon.  This helped tremendously when I grocery shopped but was unsure about reading labels.  I was able to take most of my regular recipes that I cooked for my family and make them Gluten-Free simplyby altering ingredients.

 

2. Keep your own butter dish in a cupboard so kids don't accidently use...now I label my own mayo, pbutter, etc with big gluten-free on the lids & my kids know not to "double dip"...however, when they do forget, we laugh it off(and I grab a new jar for myself next time I am at grocery store)...this change was new to the entire family

 

3. Make sure you have your own toaster...I bought a cheap one in a different color from our "regular" toaster...

 

4. You will eventually find flour mixes that you love...trial and error...I will say, my favorite is "Pamela's Pancake & Baking Mix"...it makes fabulous muffins, pancakes, cookies, etc. 

 

5. You mentioned dairy...I also had to stay away from dairy for a while until my gut healed some...each person is different, but I do know that is pretty common

 

6.  I love the advice above to "be careful, not paranoid". 

 

Be patient with the journey!

tonalynn Explorer
tonalynn
Posted

Hi foolintherain!

 

I know how you feel - I was diagnosed just 2 months ago. I didn't really have any of the intestinal symptoms people talk about here. But I AM thinking my Hashimoto's and depression are direct results of being an undiagnosed, lifelong celiac.

 

This is an extremely overwhelming change! People who don't have to go gluten free really can't understand how all-encompassing this is. I just talked to a lady the other night who was meat, dairy and gluten free. She said the 1st two were a breeze to eliminate, but gluten is by far the most difficult. I keep wondering what in the world she eats! ;-)

 

I trust the long-time folks on here that it WILL get easier, I just hope it's soon. Make the change in the way that's easiest for you. Some people weren't big bread eaters to begin with, so they just go cold turkey and they're fine. Others like me were bread junkies and have a more difficult time. I am a substitute girl - if I can find a comparable substitute for the gluten filled food, I'm all for it. They may not be the healthiest things for me to eat, but I don't care, I just think of it as a stage in the transition.

 

Don't overwhelm yourself. I cried at the thought of having to replace all my tupperware, it's just too much. Do what you can when you can. We are fortunate in the fact that we weren't at death's door when we found out we had to eliminate gluten, like some people here, so we may get sick on our journey to being completely gluten free, but think of it as a bump in the road. We WILL figure this out, everyone here promises we will. Just do what you can, when you can. And be kind to yourself (I'm having a tough time with that one).

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I think that once you start feeling better, that's when it begins to get easier.  It starts to feel worth it. 

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