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

Scared

Jilly68147

Recommended Posts

Jilly68147 Newbie
Jilly68147
Posted

This is my first post. I have been reading now for 2 months. In college I got a blood test and the doctor told me I had a slight allergy to wheat. (That was about six years ago) I did not follow the diet becuase I thought it was to hard and I was in denial. In December I started having really bad back and side pains, so I decieded to start following the diet to see if that would help. It has a little but I am still in pain and now I am scared that I have waited to late and have caused more serious damage. I have been crying alot lately just scared of what it could be. In college I lost of friend to stomach cancer at the age of 22, so of course I am expecting the worse. I know I have to get that byopsy but I really don't want to.

About two weeks ago after reading everyones posts, I thought I just need to make the appointment and get it over with, so today I have my first appointment with the GI doctor. I am very very scared, so please wish me luck!

Thanks!

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

Celiac.com Sponsor (A8-M):


Jenn2005 Contributor
Jenn2005
Posted

Hi. I understand how scared you are but you are doing the right thing by seeking a dx. I was scared to death when my husband first got sick and I just drove myself crazy thinking they would find stomach or colon cancer when he went in for his biopsy. They were actually looking for cancer at this time, they never even mentioned or considered Celiac. So long story short when the biopsy came back it was positive for Celiac, and he had the gene test done which showed he had a Celiac and Gluten Sensitive Gene. He started the diet and has been gluten free for a little over 4 months now and we are seeing improvement. He was very sick when all this started and he has lost over 50 pounds but the improvements are happening. He has had 2 endospoy & colonoscopy procedures in 6 months and they have been clear of everything but Celiac and his 2nd one showed great improvement. Good luck on your procedure and keep reading on the board once you start the diet it will really help. Be sure to ask any questions everyone here is very friendly and happy to help.

Jennifer

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

Welcome to the board! I can understand your fear. There were a few times when my body was in such pain that I thought that my days were indeed numbered and cried because I was certain I wouldn't be around to see my children grow. I can remember sitting on the stairs, bent over in excrutiating pain, thinking the end was near. Gluten not only messes with your body physically, it also screws you up emotionally. That is why depression is so common with celiac disease. There are many people here actually when they get accidentally glutened, they become very short-tempered and unstable emotionally (me included!)

There are people on this board who literally have been on death's door before they finally got a diagnosis and they are healthy, vibrant gluten-free people now! You will get through this. Sounds to me like it is a strong possibility that it is celiac disease, and if that is the case, you are one step closer to regaining your health by finding out.....

I will be thinking of you today and sending you hugs........

Good Luck!

Karen

jerseyangel Proficient
jerseyangel
Posted

Jilly--Just want to welcome you in here and let you know that I understand your fears. I was ill for years--and had not even heard of Celiac. My dad had the early stage of colon cancer (thankfully he is still doing fine) and I was afraid that my problems had something to do with that. I saw a gastro. last spring, had the endo. and colo. (the colo. because at the time, we wanted to rule out other things, too). Happily, I didn't even have a polyp! Although I was dx. with Celiac, it was a sort of relief, because my mind was telling me it was going to be much worse. I know it's scary, but I think you're doing exactly the right thing. Make a list and tell him or her everything--even what you are afraid of. I'm sending good thoughts your way--let us know how you do :)

Guest stef 4 dogs
Guest stef 4 dogs
Posted
This is my first post. I have been reading now for 2 months. In college I got a blood test and the doctor told me I had a slight allergy to wheat. (That was about six years ago) I did not follow the diet becuase I thought it was to hard and I was in denial. In December I started having really bad back and side pains, so I decieded to start following the diet to see if that would help. It has a little but I am still in pain and now I am scared that I have waited to late and have caused more serious damage. I have been crying alot lately just scared of what it could be. In college I lost of friend to stomach cancer at the age of 22, so of course I am expecting the worse. I know I have to get that byopsy but I really don't want to.

About two weeks ago after reading everyones posts, I thought I just need to make the appointment and get it over with, so today I have my first appointment with the GI doctor. I am very very scared, so please wish me luck!

Thanks!

Boy do you have good company here! I was sick for almost 2 years and kept telling my husband I'm going to die and they'll never know why! I was so depressed and angry. I finally got a diagnosis and thought everything would be instantly better. I went into even deeper depression after I realized the impact this had on my life. I gained 30 lbs. adding insult to injury. I like this forum because alot of people here seem to have experienced the same thing and for the first time in a long time I no longer feel like a freak! This place has become a saving grace for me. Hopefully for you, in time with a good diagnosis and some comforting friends from here, we can help you get through your tough times. Even long distance cries with friends are cathartic! We have your back! Chins up!

Stef 4 Dogs

Jilly68147 Newbie
Jilly68147
Posted
  • Author

Well, I just got back from the doctor and I feel much better!! My byopsy is schedualed for March 21! She calmed most of my fears and told me that she will put me totally out for the procedure. So that was good! However, she told me that I should add gluten back into my diet to get an accurate reading. Just as my tummy feels a little better, I have to bring on the WHEAT!

Thanks for all the encouragement and support and taking the time to respond it means alot! :)

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. tiffanygosci
      - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After...
    2. knitty kitty
      - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      On the AIP diet, all processed foods are eliminated. This includes gluten-free bread. You'll be eating meats and vegetables, mostly. Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well. Veggies should be fresh, or frozen without other ingredients like sauces or seasonings. Nightshade vegetables...
    3. Yaya
      - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      Thank you for responding and for prayers. So sorry for your struggles, I will keep you in mine. You are so young to have so many struggles, mine are mild by comparison. I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of. Following surgery: multiple symptoms/oddities appeared including...
    4. larc
      - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back. My cardiologist offered me a collection of pharmaceuticals at the time...
    5. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      So I should not eat my gluten free bread? I will try the vitamins. Thank you all so very much for your ideas and understanding. I'm feeling better today and have gathered back my composure! Thank you kitty kitty I am going to look this diet up right away. And read the paleo diet and really see if I can make this a better situation then it currently...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,921
    • Most Online (within 30 mins)
      7,748
    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Does anyone here also have Afib

      By Yaya · Posted

      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      Does anyone here also have Afib

      By larc · Posted

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.