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

Just getting started here. Need more help!

clutchlee

Recommended Posts

clutchlee Rookie
clutchlee
Posted

Have not had a diagnosis.  But I need help sorting through my symptoms.  Thanks to cyclinglady and GFinDC for your previous responses.

For those on the forum who have a a Celiac Diagnosis, I have questions about your symptoms prior to diagnosis.  Did your symptoms fluctuate on a daily basis or were they pretty constant?  Did just the act of eating and digestion make them worse, even without ingesting gluten?

My symptoms currently include fatigue, insomnia, burning mouth syndrome, blurry vision, some loose stools and some gas.  The blurry vision and burning mouth are brought on by eating/digestion and continue throughout the day worsened by more eating.  Symptoms continue even as I try to eliminate gluten.

Thanks so much for your feedback!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I have celiac disease.  From what I have learned through research is that symptoms can wax or wane.  There is no consistency at all.  This applies to me personally.  At the time of my diagnosis, I was just anemic.  I had always been anemic which was attributed to my being a woman and Thalaseemia (genetic anemia), but during an initial consult to the GI for a routine colonoscopy (over 50), he looked at my chart and told me that he thought I had celiac disease.  I was shocked.  I had no intestinal issues.  There was no direct correlation of symptoms when I consumed gluten.  Many people have no symptoms at all!  

Since then I have been glutened twice.  Symptoms have drastically changed.  Now I get intestinal issues.  The first time severe and the second not so severe.  In both cases, I have no idea what caused the glutening, but my current GI did measure my antibodies and they were again elevated.  Those symptoms took three months to resolve.  

The best thing is to ask your MD to give order a celiac blood test, but you have to be eating gluten daily for the tests to work.  Go gluten free?  I would NOT recommend it until you have been tested.  

I wish you well.  

 

clutchlee Rookie
clutchlee
Posted
  • Author

Thank you cycling lady.  Going to MD next week.  Are the Celiac Blood tests and those described in the Univ. of Chicago website (you suggested) for Gluten Intolerance, the same??

Thanks so very much!

cyclinglady Grand Master
cyclinglady
Posted

Yes.  If possible, ask for the complete panel and not just the screening TTG.  Why?  You could be an odd duck like me who tests negative to the TTG.  

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,344
    • Most Online (within 30 mins)
      7,748
    GFBB95
    Newest Member
    GFBB95
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      ttg iga high (646 mg/dl) other results are normal

      By knitty kitty · Posted

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      My TMJ ended when I lost a middle lower molar.  I had an amalgam filling from youth (1960s) that failed and the tooth broke.  I had what was left pulled and did not bother to replace it.  My bite shifted and the TMJ went away.  I just had to be careful eating M&M Peanuts because they would get stuck in the hole.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      Yes, I wondered about the units as well. That large number sure looked more like what we're used to seeing in connection with total IGA scores rather than TTG-IGA. The total IGA test is given to determine if you are IGA deficient. In the case of IGA deficiency, other IGA tests will b skewed and their scores cannot be trusted. Elevated total IGA can point to other health issues, some of them potentially serious, or it can mean nothing. But it doesn't look like you have celiac disease.
×
×
  • 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.