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

Introduction And Hello


sknisley22

Recommended Posts

sknisley22 Newbie

Hi,

My name is Stephanie, and I just decided to join today. I won't go into my lifelong struggles with celiac, but I sure wish doctors would have discovered it sooner. I had so many symptoms pointing right at it, and no one thought to check for it. I even had a doctor this past year tell me I was probably making everything up in my head because I was so stressed out and didn't want to deal with my real problems...I switched doctors.

Anyway, I was diagnosed with celiac disease right before Thanksgiving (which was hard because I hated watching everyone eat food I was allowed to eat just the week before). The doctor said he knew before he even took the biopsy that it would test positive (all the villi was gone). No one around me really knows about this disease or understands it. I just got married, and even my husband thinks I'm over-reacting when I tell him I can't have just one bite of something he made or wants me to try. It's really hard sometimes to deal with this disease in a society that is so focused on food. Sometimes I'll just watch people eat and think how normal they are and wonder why I can't be normal. I have 3 siblings, and they are all fine. I also have another autoimmune disease, sarcoidosis. It's also not widely known about, at least in my area. I feel like my body just does nothing but fight itself. As soon as I get back on my feet, I'm down again with something else.

I hope as I learn more of what I can eat these feeling will go away and I'll start to feel normal again.

Anyway, back to my intro. I live in Indiana, but it's so cold here I plan to move to Texas someday!

Oh yeah, and in a couple of weeks I'll be 24!


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



Celiac.com Sponsor (A8-M):



Guhlia Rising Star

Welcome welcome welcome! I hope that some of your other issues will resolve themselves or lessen once your body begins to heal on the gluten free diet. This forum is absolutely wonderful and it's the first place I come when I have a question. Read through some of the older posts and I'm sure you'll find a ton of invaluable information. Anyway, just wanted to say welcome!

dlp252 Apprentice

Welcome!!!!

jerseyangel Proficient

Hi Stephanie :D Welcome to the board! I'm so glad that you found us here--no need to feel alone with your Celiac any longer.

I can relate to being misdiagnosed--I have most likely had it for 20 years--but only diagnosed for a year and a half! No one ever thought to look for Celiac, and I ended up doing research on my own. I finally asked a gastroenterologist if this could be my problem. Luckily for me, he took it seriously and agreed to test.

This disease can be especially tough around the holidays--but by next year, you will be a seasonned pro! This board has tons of great recipes and cooking and baking ideas. If there's something you don't see, ask! I made a fantastic Thanksgiving dinner--all traditional foods and pumpkin pie--and all gluten-free!

Lots of people don't understand why "just a little bit *does* hurt"--they don't understand that Celiac is not an allergy, but an autoimmune disease and that when the immune systen detects a trace of the protein, it goes into attack.

A good book on the subject is "Celiac Disease--A Hidden Epidemic" by Dr. Peter Green. Maybe your husband could also read it, so he can get a better idea of what you're dealing with.

Again, welcome, and I there's anything we can do to help, just ask!

happygirl Collaborator

Well you have come to the right place! We are happy you have found us. Its frustrating that so many have stories just like yours...on the other hand, there REALLY are people who can relate and understand. Really.

I can completely relate...I was diagnosed at age 23, two months after getting married. Like life isn't already a bunch of changes right now for you, right?!!!!!!!

I am happy you have found the answer. Let us know what we can do to help. Feel free to PM me anytime you'd like.

Laura

nikki-uk Enthusiast

Hi Stephanie and glad you found us!!!

Hopefully this forum can help you in not only practicalities of the gluten-free diet but offer sympathy and understanding should you ever need it!! :D

Welcome!! :)

lonewolf Collaborator

Welcome to the board! You'll get lots of good tips and advice here - and some support that it sounds like you need. Stick around and ask lots of questions - we're happy to help!


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



Celiac.com Sponsor (A8-M):



ElizabethN Apprentice

Welcome! This is a great place to be to find support. It is SO HARD at first, but it gets easier. I diagnosed myself more or less when I was 24 and somewhat newly married. My biggest fear was that no one would believe me because so many doctors had told me I was crazy or a hypocondriac. But guess what? Once I started feeling so much better it was obvious to everyone that gluten was the problem. Your husband will come around, it will take him awhile to get used to it but he will-especially once he sees how good you are feeling without gluten! Go to the library and check out Dangerous Grains and make him read it!

I have been here a little over a year, I rarely post but I find reading the board to be extremely comforting- knowing I am not the only one! And it is invaluable for tips of eating out, recipes, etc. Glad you are here!

Sillyyakdidi Apprentice

welcome! I just joined too, all the veterans on this site have been SO helpful and really make things easier. Stay strong, and don't take a bite of anything, you need to get a book on celiac, or for now go to a website like webmd and make your DH read the gory details. It is life or death!

kbtoyssni Contributor

Welcome!

angel-jd1 Community Regular

Welcome to the group. Glad you decided to join. Post often!

-Jessica :rolleyes:

Hi,

My name is Stephanie, and I just decided to join today. I won't go into my lifelong struggles with celiac, but I sure wish doctors would have discovered it sooner. I had so many symptoms pointing right at it, and no one thought to check for it. I even had a doctor this past year tell me I was probably making everything up in my head because I was so stressed out and didn't want to deal with my real problems...I switched doctors.

Anyway, I was diagnosed with celiac disease right before Thanksgiving (which was hard because I hated watching everyone eat food I was allowed to eat just the week before). The doctor said he knew before he even took the biopsy that it would test positive (all the villi was gone). No one around me really knows about this disease or understands it. I just got married, and even my husband thinks I'm over-reacting when I tell him I can't have just one bite of something he made or wants me to try. It's really hard sometimes to deal with this disease in a society that is so focused on food. Sometimes I'll just watch people eat and think how normal they are and wonder why I can't be normal. I have 3 siblings, and they are all fine. I also have another autoimmune disease, sarcoidosis. It's also not widely known about, at least in my area. I feel like my body just does nothing but fight itself. As soon as I get back on my feet, I'm down again with something else.

I hope as I learn more of what I can eat these feeling will go away and I'll start to feel normal again.

Anyway, back to my intro. I live in Indiana, but it's so cold here I plan to move to Texas someday!

Oh yeah, and in a couple of weeks I'll be 24!

Canadian Karen Community Regular

Welcome to the group!

Jump right in!

Hugs.

Karen

missy'smom Collaborator

Welcome :)

mtdawber Apprentice

Hi there, welcome to the board. I've been here about a month and I find this site a god send. Glad to have you here! :rolleyes:

tarnalberry Community Regular

Welcome!

SchnauzerMom Rookie

Welcome! This is a great place and very helpful. I haven't been here very long myself.

blueeyedmanda Community Regular

Welcome Welcome Welcome :):):):):)

Mtndog Collaborator

Welcome Stephanie! Glad you're hear. Sorry you got diagnosed the day before Thanksgiving :( but the worst is over and it only gets better from here! ;)

Yenni Enthusiast

Welcome!!!

"As soon as I get back on my feet, I'm down again with something else."

I can so relate to those words. and I know what you feel about people not understanding you can't even have a small bite of something and they think you're weird.

This is a great place. I haven't been a member for that long and things are very new to me too, but I have always felt this "warmth" from people at this place. The most welcoming board I have ever seen.

Rebecca47 Contributor

Hello Stephanie,

Welcome and you have come to the right place. I joined in Aug of 2006 and everyone here is very helpful and you will learn alot. I know I sure did and i am still learning. :rolleyes:

Remember there are no dumb questions ;). So ask about everything you need or want to know.

I know I did. :lol:

Rusla Enthusiast
Hi,

My name is Stephanie, and I just decided to join today. I won't go into my lifelong struggles with celiac, but I sure wish doctors would have discovered it sooner. I had so many symptoms pointing right at it, and no one thought to check for it. I even had a doctor this past year tell me I was probably making everything up in my head because I was so stressed out and didn't want to deal with my real problems...I switched doctors.

Anyway, I was diagnosed with celiac disease right before Thanksgiving (which was hard because I hated watching everyone eat food I was allowed to eat just the week before). The doctor said he knew before he even took the biopsy that it would test positive (all the villi was gone). No one around me really knows about this disease or understands it. I just got married, and even my husband thinks I'm over-reacting when I tell him I can't have just one bite of something he made or wants me to try. It's really hard sometimes to deal with this disease in a society that is so focused on food. Sometimes I'll just watch people eat and think how normal they are and wonder why I can't be normal. I have 3 siblings, and they are all fine. I also have another autoimmune disease, sarcoidosis. It's also not widely known about, at least in my area. I feel like my body just does nothing but fight itself. As soon as I get back on my feet, I'm down again with something else.

I hope as I learn more of what I can eat these feeling will go away and I'll start to feel normal again.

Anyway, back to my intro. I live in Indiana, but it's so cold here I plan to move to Texas someday!

Oh yeah, and in a couple of weeks I'll be 24!

Welcome to the board Stephanie and there is great help and great recipes on here because of all the awesome people. I have to say this board saved my life when I first came here.

Now, I stongly suggest that your husband come on and read some posts. If he really loves and cares for you he will and he will then know you are not over reacting. This is not a whimsical thing and a "little bit" will hurt, believe me. This is not a disease that you can play games with. This is your life and you are not alone because you have all of us and there is more out there who don't know they have it or are in the process of being diagnosed.

If family or friends say "just eat it a little bit won't hurt." Then say, "I will eat it if you let me shoot you with a canon because a little canon ball won't hurt."

olalisa Contributor

Welcome, Stephanie! You've found a great place with a wealth of information and camaradarie (I'll need spell check on THAT word)....

I know it was hard being diagnosed just before the holidays, but consider it this way--you got your first holiday season under your belt right away! It will get easier. I've been diagnosed around 9 months and feel like I'm getting the hang of it.

Stick around, you'll be glad you did :)

hey--where IS the spellcheck! Momma Goose! Help me!

Adelle Enthusiast

Welcome!!

I'm 22 and I dx'd myself about 5 months ago. I didn't go for the biopsy. I just dodnt need one more doc visit!!

Anyway I can relate to what ur going thru, it'll get better!! My husband went gluten-free too, more a show of support than anything else. Now HE feels super great and is losing weight and getting all muscley. I'm still in the process of healing (I'm just a leeetle bit green with envy). Oh well this place has been amazing. Ask ANY question. Nothing is too gross or stupid.

Welcome!

LL04 Newbie

Hello!! It's good that you made it here!

The first while is going to be tough, but ask any and all the questions that you have. Going on to the board and looking through old threads is definitely a big help!!

The most important thing for you to do first is make sure you realise yourself, how serious celiac disease is and then make sure everyone around you realises it as well. Rusla is right, your husband and any 'doubters' in your family need to be brought up to speed and be there to support you and help you. They need to learn right along with you and if it means spending a day in the forum "for loved ones of those with celiac disease" asking their own questions, then that's what they need to do.

Also know that all the advice everyone offers here results from their own experiences and the knowledge they have gained. Some of it will pertain to you and some won't. Some of it will help you personally and some won't....don't give up and don't be discouraged because soon enough you will find what works for you in your life!! :)

You're not alone, we are here for you :D

Yenni Enthusiast
Welcome!!

I'm 22 and I dx'd myself about 5 months ago. I didn't go for the biopsy. I just dodnt need one more doc visit!!

Anyway I can relate to what ur going thru, it'll get better!! My husband went gluten-free too, more a show of support than anything else. Now HE feels super great and is losing weight and getting all muscley. I'm still in the process of healing (I'm just a leeetle bit green with envy). Oh well this place has been amazing. Ask ANY question. Nothing is too gross or stupid.

Welcome!

Wow, that is cool that your husband went totally gluten free too. :)

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. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
×
×
  • 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.