Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


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

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Diagnosed With Something I Hadn't Heard Of

Akayhu

Recommended Posts

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. 

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

Celiac.com Sponsor (A8-M):


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:

Archived

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

Go to topic listing

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.