Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Diagnosed And My Head's Spinning!


foolintherain

Recommended Posts

foolintherain Newbie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

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

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

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

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

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

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Matthias posted a topic in Coping with Celiac Disease
      0

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    3. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    4. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.