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Hard Time Going Gluten Free

ksmith2939

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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

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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. :)

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