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Going gluten free for 1 year still diarrhea

Catseyez

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Catseyez Newbie
Catseyez
Posted

Hi I'm new to this site, well kinda lol I have been browsing for quite some time. I have celiac, I have been told to go gluten free, which I have for approx a year, the only symptoms I have is diarrhea, I have not had a solid stool in over 2 years, I am at wits end, I have tried esstential oils to special diets and nothing seems to make my stool solid. I tried the scd diet for a few days and made me very sick. Any advice or to k ow I am not alone would be great. Thankyou in advance

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tessa25 Rising Star
tessa25
Posted

Did you ever get your celiac blood tests redone to see if the numbers are now in the normal range?

Catseyez Newbie
Catseyez
Posted
  • Author

Hi , no I have not, my dr said there was no point to test because we already know I have celiac. Is this something I should be doing ?

tessa25 Rising Star
tessa25
Posted

If you had a celiac blood test done that showed high at diagnosis then I believe you are supposed to test at the 3 month then 1 year mark to verify that those numbers went to normal levels on a gluten free diet. If they are still high you might not be as gluten free as you thought or just going gluten free isn't enough.

Some people need to do a more restrictive diet until their insides heal.

 

 

cyclinglady Grand Master
cyclinglady
Posted

Your doctor is wrong,  you should be getting an annual test to see if you are doing well.  This is standard care for celiacs.  Learn more:

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By checking your celiac antibodies, you can determine if celiac disease is causing your current problems.  You might be getting gluten into your diet.  If negative, your doctor can look to other causes.  

Catseyez Newbie
Catseyez
Posted
  • Author

Thank you so much, I will be making a doctors appointment soon :)

  • 3 weeks later...
Prissymt Newbie
Prissymt
Posted

I don't know if this is good news for you, but it will give you an idea of what you might expect as you go forward.  I was diagnosed 10 years ago, but have had the symptoms lifelong, which is over 60 years. The Endocrinologist said he had never had a patient who could trace their Celiac that far back, so we really didn't know what to expect as there was quite a bit of damage.  For years I have followed a gluten-free diet, but more restricted as I was also diagnosed with Interstitial Cystitis.  I  endeavored not to stress as much as I had before, because in my experience that is a trigger. I finally had a diagnosis and although the disease changed my life and my choices in life, I then had some level of control. My symptoms - the endless diarrhea  and stomach pain and skin issues - persisted for years, but with gradual improvement. At this point I really only have issues if I am under heavy stress with my work or my family, and I know how to plan for and work around that.  So I do believe that every person with Celiac disease has a different timeline for recovery.  But I believe that you will gradually enjoy a more normal life.  

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