Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,114
    • Most Online (within 30 mins)
      7,748
    Vegan Brandy
    Newest Member
    Vegan Brandy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Soleihey
      Gluten Ataxia and Malabsorption

      By Soleihey · Posted

      I have been on supplementation for almost 11 months with no deficiencies showing up on blood work. So was just hoping to hear someone else’s story where it took longer to heal. 
    • Erain
      Orgain Protein Powder

      By Erain · Posted

      Here’s the answer from the company 😊   Hi Emily,    Thank you for reaching out to us! We can confirm the Organic Protein + 50 Superfoods Powder is gluten free. The organic barley and wheatgrasses we use are harvested prior to jointing, before the grain forms and any gluten protein is present. Rest assured appropriate measures are taken to ensure our gluten free products comply with the FDA final rule to be labeled as gluten free, as claimed on the side-panel label. Our suppliers are required to verify each ingredient and in order to ensure that our gluten free products comply with the FDA requirements, our manufacturing facilities use the ELISA test method to confirm gluten levels are less than the standard limit of <20 ppm.    If you have allergy concerns about consuming the grasses, we recommend consulting further with your healthcare provider. I hope this information helps! Please let us know if you have other questions.   
    • Erain
      Orgain Protein Powder

      By Erain · Posted

      That’s great to know. Thanks Scott
    • trents
      Postponing seeking a diagnosis?

      By trents · Posted

      Welcome to the forum, @kim-d! Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread. IMO, I would wait until you have time to do it right so as to remove all doubt as to whether or not your gluten consumption was adequate for long enough to ensure valid testing. In the meantime, focus on removing gluten from your diet and see how your symptoms improve (or not) as one piece of the diagnostic puzzle.
    • kim-d
      Postponing seeking a diagnosis?

      By kim-d · Posted

      Hello. I'm a 22 year old college student and I've had constant stomach problems since I was 14. Recently I noticed that my problems get worse when I eat more wheat. I tried to follow a gluten free diet, which didn't end up entirely gluten free, but I still had reduced my gluten consumption very much, and I felt a lot better. I also have fatigue, inability to gain any weight, iron deficiency, possible vitamin deficiencies, really bad memory and brain fog that increases by time, unexplainable muscle aches and tachycardia which all can possibly explained by celiac/NCGS.  I wasn't able to continue a completely gluten free diet as I am eating from my school and dorm's cafeteria and almost all food there have gluten so I was going very hungry. They do offer a gluten free menu with a report though. So I decided I should try getting a diagnosis if I can, especially after reading how it was much harder to do gluten challenge after quitting gluten for a while. I was able to get an appointment for next week, and started eating around 150gr of bread per day to be sure.  First 24 hours I didn't feel any worse so I was starting to doubt myself, but then bloating hit hard. It wasn't anything unbearable, but the problem is I have finals soon and I'm now realizing this is a really bad time to do this. I can't begin studying from pain distracting me. I'm thinking of cancelling the appointment and eat low gluten until exams are over.  I worry about one thing. Before I went low gluten, I was eating a lot of bread already for over a month, which is what clued me into gluten, and I only went low gluten for around 10 days before going high gluten again. I wasn't that worried about a false negative. But if I eat low gluten until my exams are over, it means over a month of low gluten, and I would need a lot more time eating high gluten later to get a correct result.  I'm not sure which one should I do, bear it until my appointment or cancel it and try again when I'm free later. And If I choose the second one, how long would I need to do the gluten challenge for a blood test?
×
×
  • Create New...