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. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

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

    • Total Members
      132,920
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.