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

By foolintherain
in Coping with Celiac Disease

Recommended Posts

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!

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

Celiac.com Sponsor (A8-M):


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. 

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.

Go to topic listing

  • 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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,040
    • Most Online (within 30 mins)
      7,748
    marlee h
    Newest Member
    marlee h
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.