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Newly Diagnosed With Something I Hadn't Heard Of

Akayhu

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Akayhu Newbie
Akayhu
Posted

Two weeks ago after Endo and colonoscopy was diagnosed with Sensitive Ceilac disease and IBS. I have suffered for 20 years at the least and started eating gluten free a year ago,and three months ago went totally grain free because corn and rice were also causing severe pain and issues. I don't eat xanthum gum or anything made of corn or rice either but I'm affected by air borne particules. I'm still suffering from pain even when hibernating at home free from air borne gluten just not as severe,how long could it take for it to leave my system? They are setting me up with a RA doctor for testing as well..I see that many say you have to be active gluten eating for test,it had been a year and they said I have it ..is that odd? The reason for Sensitive Ceilac diagnose was said because of air borne issue as well as other grains like corn and rice. 

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BlessedMommy Rising Star
BlessedMommy
Posted

That is unusual to be dx'ed with celiac after 1 year gluten free, but certainly not unheard of, as it can take awhile for celiac damage to heal. 

1desperateladysaved Proficient
1desperateladysaved
Posted

I can relate to cutting all grain and be careful about airborne stuff.  Watch out for harvest time!  I had 30 years of symptoms after a bout with mono when I was 19.  I have been on quite a quest since 2007 (and a quest decades before that) to regain health.  I watch out for xanthum gum also, and my body can find guar gum and reject it.  My situation had become very complicated over the years and I didn't know at first to go gluten free.  After 8 months of gluten free I felt much better, but have continued making changes and improvements even after that.  I have hope for you that when you eat well and learn more, that you will be much improved too!  IF you ever need ideas of how to improve next; I could give you my list.  Each of us have a list, though, and each situation is different.

 

I wish you the very best in healing.  Glad you figured out the celiac AT LAST!

 

Dee

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.:)

 

Autoantibodies that attack the endomysial layer of our intestines (as shown in the tTG IgA, tTG IgG, and sometimes the EMA IgA tests) can remain elevated for months or years after a celiac has stopped eating gluten.  There are a few members around here who were still testing positive after 2 years gluten-free - at close to one year gluten-free I was still slightly positive myself.  It seems to me that those who have gone many years without a diagnosis tend to have the autoantibodies circulating longer but I have seen kids who tested positive a year or two into the diet as well.

 

Contact with gluten will cause your blood tests to be elevated and slow their decent.  If you have been "glutened" a few times before testing, that can affect tests in some too.

 

I understand your frustration with waiting to get well.  I too saw a rheumatologist when I was about 9 months gluten-free and having a hard time believing that my symptoms were still celiac related.  My blood work was fine though and the docs believed it was still celiac disease.  I think they may be correct as my periods of ill health (pain, inflammation, fatigue, etc) seem to becoming less frequent and less severe as time goes by. I have been gluten-free for over two years and I still experience days or weeks where I feel 20 years older than my age, but I I am still much better than I was.  I'm hopeful that I will continue to improve.

 

I hope you feel better soon. Best wishes.  :)

Akayhu Newbie
Akayhu
Posted
  • Author

I can relate to cutting all grain and be careful about airborne stuff.  Watch out for harvest time!  I had 30 years of symptoms after a bout with mono when I was 19.  I have been on quite a quest since 2007 (and a quest decades before that) to regain health.  I watch out for xanthum gum also, and my body can find guar gum and reject it.  My situation had become very complicated over the years and I didn't know at first to go gluten free.  After 8 months of gluten free I felt much better, but have continued making changes and improvements even after that.  I have hope for you that when you eat well and learn more, that you will be much improved too!  IF you ever need ideas of how to improve next; I could give you my list.  Each of us have a list, though, and each situation is different.

 

I wish you the very best in healing.  Glad you figured out the celiac AT LAST!

 

Dee

Thank you..any list is much welcome..appreciate your time and to the others as well. Sorry you all suffer ,but glad I'm not alone  :unsure:

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