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

Confused

Breezy32600

Recommended Posts

Breezy32600 Rookie
Breezy32600
Posted

Ok so I need some serious guidance. I will be 31 this year. Apparently I was diagnosed with Celiac Disease when I was about 3 years old. According to my father I was very ill, was in the hospital for about 2 months, and almost died because of it.

They also said that for an entire year I was only able to bananas. Yes I said bananas only.

I have always had stomach problems, I ate anything and everything. I was no where close to being on the Gluten Free Diet at all.

My parents did not control my diet either as they should have. Nor did they ever say you have Celiac Disease and this is something that will have for the rest of your life.

Well guess what I was not aware that I was still walking around with this at all.

Instead last week my stomach started to hurt so bad that I could not function. It was absolutely horibble.

My stomach was swelling up and suddenly I looked like was about 5 or 6 months pregnant.

My husband took me to the er that evening. The dr had a CT done of my abdomen. and of course nothing showed on the CT nor did anything come up with the blood work.

The dr said that she thought that maybe it was IBS. So I figured that I would deal with it like I dealt with everything else.

I spent all weekend in bed because of the pain.

I started to research IBS and came across Celiac. And well something about it just seemed to be too familiar.

I turned around and sent my father an email asking him if Celiac was what I was diagnosed with when I was very young. And his response "Yep, and it was very bad".

Well very encouraging words. So I wrote him back and said "Well dad it does not just go away......."

I stay tired, hurt all over, numbness in hands and feet, constipation, along with other things that I will not mention.

I feel like my life is suddenly turned upside down.

I have an appointment with a regular doctor on Monday. So I am anxious to see what he has to say about this. And I am wondering what kind of damage I have done to myself over the last 28 years or so.

Any help would great!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I am so sorry this has happened to you. Don't be too hard on your parents, it used to be thought that celiac was a 'child's' disease and that they would outgrow it. We now know that does not happen although it can take awhile for symptoms to become severe again.

On the good side you now know what is going on and you have found a good place for info and support as you go into the gluten free life. If you want to have any celiac related testing do wait until after all testing is done before you start the diet. If you go gluten free before the tests it will result in a false negative.

Jana315 Apprentice
Jana315
Posted

Wow! Sounds like you've had quite an ordeal. It is good to know that you're now pinning it down. How was your appt? My recommendation would be to have your Dr (or another Celiac knowledgeable Dr) order the Celiac blood panel and get a biopsy - given your history, it will be good to get a base-line on the damage in your intestine now so you can monitor your improvement.

Are you gluten-free now? You've come to the right place to learn about Celiac - it is much more complicated than just "avoiding gluten" - esp. if you are symptomatic and very sensitive to it.

Breezy32600 Rookie
Breezy32600
Posted
  • Author
Wow! Sounds like you've had quite an ordeal. It is good to know that you're now pinning it down. How was your appt? My recommendation would be to have your Dr (or another Celiac knowledgeable Dr) order the Celiac blood panel and get a biopsy - given your history, it will be good to get a base-line on the damage in your intestine now so you can monitor your improvement.

Are you gluten-free now? You've come to the right place to learn about Celiac - it is much more complicated than just "avoiding gluten" - esp. if you are symptomatic and very sensitive to it.

No I have not gone to the doctor yet. My appointment is set for Monday July 27th. I am not sure if this doctor even knows what Celiac is. I know that I have quite the road in front of me though.

No I am not gluten free yet. I have not begun that. From what I have ready it says to not stop eating regular food until after the testing is done.

The really sad thing is that I got really bad about 2 years ago and started going to the doctor. Well they sent me to an OB/GYN. He felt that I needed to have a hysterectomy. I was having ALL of the SAME SYMPTOMS. Well I went through with the hysterectomy. I was not aware of the Celiac Disease then at all. Nor did anyone in my family think to say something. I had the surgery Feb. 08 luckily enough I have my 9 year old daughter. And I will have her tested also.

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. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    2. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    3. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    4. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety

      This article, and the comments below it, may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748
    Taraceliacmama
    Newest Member
    Taraceliacmama
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.