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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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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

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