Jump to content
  • 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):

I'm Actually Really Scared... Help?


qudzbudz

Recommended Posts

qudzbudz Newbie

Okay so basically it was a year ago when I started thinking that I had IBS. However it was about two months ago when I found out that I had a blood test and I am vitamin D deficient and anemic. I do have restless leg syndrome, (which is a symptom for Celiac). I also found out that whenever I ate gluten and wheat, my IBS symptoms were worse.  :wacko:

 

So I went on a gluten free diet for a week and it was amazing. I didn't feel any cramps of bloating... My doctor suggested that I might have Celiac. I had a blood test and it came out negative but she said that they can't rely on just a blood test, so she suggested an endoscopy... At first I was willing to because if I do have Celiac then, I should get diagnosed. However, I am only 16 and I'm not really keen on the idea...  :o

 

I decided that I would have the endoscopy later on when I'm ready but if I do have Celiac and carry on eating gluten, then I could end up with type 1 diabetes and cancer... and that really scared me... I've been eating gluten for a year now since I found out that I might have 'IBS' and so if it is Celiac then... ahhhh I'm so scared. 

 

I've decided to go on a strict gluten-free diet but do you think I'm worrying too much or am I doing the right thing? Also... should I have started the diet earlier on? (I'm such a worry bag, I'm so sorry)

 

Thank you so much :(


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Okay so basically it was a year ago when I started thinking that I had IBS. However it was about two months ago when I found out that I had a blood test and I am vitamin D deficient and anemic. I do have restless leg syndrome, (which is a symptom for Celiac). I also found out that whenever I ate gluten and wheat, my IBS symptoms were worse.  :wacko:

 

So I went on a gluten free diet for a week and it was amazing. I didn't feel any cramps of bloating... My doctor suggested that I might have Celiac. I had a blood test and it came out negative but she said that they can't rely on just a blood test, so she suggested an endoscopy... At first I was willing to because if I do have Celiac then, I should get diagnosed. However, I am only 16 and I'm not really keen on the idea...  :o

 

I decided that I would have the endoscopy later on when I'm ready but if I do have Celiac and carry on eating gluten, then I could end up with type 1 diabetes and cancer... and that really scared me... I've been eating gluten for a year now since I found out that I might have 'IBS' and so if it is Celiac then... ahhhh I'm so scared. 

 

I've decided to go on a strict gluten-free diet but do you think I'm worrying too much or am I doing the right thing? Also... should I have started the diet earlier on? (I'm such a worry bag, I'm so sorry)

 

Thank you so much :(

There is no need to stress out so much :)

 

While a diagnosis is good, if you feel you would do better without it, then go for it. However, from my understanding, you are still on a gluten diet right? If so, i would redo the blood test (as being off of gluten for a week could cause it to have a false negative) and then do the endoscopy.

 

The reason behind this is if you go gluten free for quite some time and then decide you want to be tested, then you would have to do a gluten challenge for several weeks and you may feel even worse then.

moosemalibu Collaborator

I second what shadowicewolf said. If you were gluten free prior to the blood test then you could have had a false negative. In order to get a positive diagnosis you need to be eating gluten prior to the blood test and the endoscopy.

 

It is a personal decision to get the official diagnosis. I went through the gluten challenge for my endoscopy in October. It was horrible - but I definitively know that I HAVE TO BE gluten free forever. It made it more real for me. But if you feel good being gluten free and can maintain it without a diagnosis then do that. But to wait and then get diagnosed later because of the fear of endoscopy -- not worth it. The endoscopy is simple and painless. You absolutely won't have any pain from the biopsies. You will be sedated and it's a quick process.

 

Hope that helped.

Archived

This topic is now archived and is closed to further replies.

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

    • Total Members
      134,036
    • Most Online (within 30 mins)
      10,442

    NCGS Celia
    Newest Member
    NCGS Celia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Vitamin A is important for vision health. But be careful in supplementing it as it can lead to toxicity. Research it and consult with your medical professional. I do not have a definite answer to your original question but I was pursuing the possible cause of nutritional deficiency. But your visual deterioration could be unrelated to your celiac disease so don't rule that out.
    • Name
      Currently 19. Doctors think I was 1 year old when celiac started, but I wasn't diagnosed until 18, because they didn't do lab work on minors. I've been on a strict gluten-free diet for 14 months now. For example only certified gluten-free nuts and I've researched best brands a lot. I take B vitamins, vitamin D, vitamin C, Curcumin with black pepper, black sesame and green tea extract, magnesium, iron, and a little selenium and zinc, beef liver capsules. I recently had my vitamin and mineral levels retested and D is the only one I don't have enough of now. I had my eyes tested at 17 and they were good back then.
    • Scott Adams
      Not everyone with dermatitis herpetiformis needs to avoid iodine. DH is caused by gluten exposure, but iodine can worsen or trigger flares in a subset of people, especially when the rash is active or not yet controlled by a strict gluten-free diet. Some people react to iodized salt, seaweed, shellfish, or iodine supplements, while others tolerate normal dietary iodine without problems. In most cases, iodine restriction is individualized and often temporary, not a lifelong rule for everyone.
    • trents
      Questions: How old are you now? How long ago were you diagnosed as having celiac disease? Do you practice a strict gluten-free diet? Are you taking vitamin and mineral supplements to offset the nutrient malabsorption issues typical of celiac disease and if so, can you elaborate on what you are taking?
    • Name
      My vision was good as a teen and now has gotten worse in the last year. Could that be caused by my celiac disease?🤓😎🥸👓🕶️
×
×
  • Create New...