Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Hard Time Going Gluten Free

ksmith2939

Recommended Posts

ksmith2939 Newbie
ksmith2939
Posted

Hi all like many of you I have been diagnosed with celiac disease. I have known I had it for about a year now but am still having such a hard time going completely gluten free. My family tries to help but doesn't understand how serious it is and how cross contamination is just as bad as actually eating gluten. I have noticed that symptoms seem to be getting worse. A lot more bleeding than I used to have and constantly having pain. I'm wondering if I should go in and get an enteroscopy (is that the one that they go down your throat?) to see if my condition has gotten worse. I also wanted to know how often I should be seeing my doc about this. There seem to be so many unknowns to me about this whole thing.... Any help would be awesome

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Hi and welcome. I think if you're getting worse a doctor's visit is always a good idea. A lot of people have a checkup and blood test at 6 months to make sure their celiac antibodies are falling. Depending on how things are going their doctors decide from there. It might help to bring your family to the doctor so they understand that you are still sick from gluten CC.

Have you told them all the bad things that happen to people with celiac disease who continue to eat gluten? You have a higher risk of cancer, other autoimmune diseases, nutritional deficiencies, osteoporosis, and permanent nerve damage while you are eating gluten. Celiac disease can be a very serious illness and maybe you haven't gotten through to them.

You may need to get your own cabinet in the kitchen that locks where you can put your gluten-free foods and condiments.

ravenwoodglass Mentor
ravenwoodglass
Posted

If your symptoms are worse and you are having bleeding then yes you should get back to the doctor. It would be a good idea to have the blood tests rerun and perhaps do both a colonoscopy and the endo to make sure you haven't got other things going on. As the other poster said if you can get a close family member to go with you so the doctor can explain how careful you need to be that is a good idea.

ksmith2939 Newbie
ksmith2939
Posted
  • Author

Thank you both for the responses back. I have a GI Appointment on Monday to go in and get things checked out and I'm bringing my mom with me this time. I don't think my family understands how serious it is and part of it is my fault because I am such a rookie at this whole thing I didn't even know how serious it was until I came across this website. It is nice to know that there are so many other people out there are dealing with the same problems I deal with everyday with this disease. Thank you again for the feedback :D

Skylark Collaborator
Skylark
Posted

Your doctor will get your mom sorted out I bet. Good luck on the appointment. Hopefully it's not serious and being stricter on the diet will have you feeling better. :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat. In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue. A wedge...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    3. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    4. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    5. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,125
    • Most Online (within 30 mins)
      10,442
    psasso76
    Newest Member
    psasso76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...