Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac's Or Something Else....?


vampkestrel

Recommended Posts

vampkestrel Rookie

Isn


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Have you brought these symotoms to the attention of your doctor and insisted that they do a full work up for other autoimmune diseases? Autoimmune diseases can come more than one at a time. The weakness that goes away in an short time and the blue arm and leg are the most concerning to me. Especially if you already know you are prone to blood clots these symptoms should not be ignored. If possible the next time these occur you should be seen while the symptoms are active.

vampkestrel Rookie

well i currently see my gp, a neurolgist, and a rhemalogist (please forgive spelling there) it finally took me insisting my gp to test for celiac disease to even get that diagnosis other then that they say they have no idea and without swelling it's propably not a blood clot. oh for the record i'm a 27 year old female... it's very frustrating over all since none of my docs know what's going on and i have to rely more on diagnosing my self and the demanding the tests to back it up.

txplowgirl Enthusiast

Extreme sensitivity to sunlight and heat intolerance. I had a cousin who started out with these symptoms. Have you been checked for Lupus? That is an autoimmune disease that runs along with Celiac and Thyroid problems.

vampkestrel Rookie

yes i a few times my ana is always a little off but they said not enough for lupus. I also had a crazy high sed rate but i'm guessing the ana and sed could just be part of celiac disease as well since apparently my doctors have no clue....sigh...my mother does have lupus though but it's not suppose to be hereditary per se

mushroom Proficient
yes i a few times my ana is always a little off but they said not enough for lupus. I also had a crazy high sed rate but i'm guessing the ana and sed could just be part of celiac disease as well since apparently my doctors have no clue....sigh...my mother does have lupus though but it's not suppose to be hereditary per se

I had a high sed rate and a CRP of 81; neither of these figures budged on a gluten free diet or on the standard DMARD drugs for rheumatoid arthritis. It was only when I started taking Humira, a TNF inhibitor, for my psoriatic arthritis, that my CRP dropped to normal. Sed rate and CRP are both measures of inflammation, and I had been telling myself that my inflammation was coming from my gut and from my other food intolerances that flared into itchy rashes, but t'weren't so.

Your crazy high sed rate needs to be investigated further IMHO.

vampkestrel Rookie

ah yes me too i thought the sed rate was from my intestines and my doc said it "propably" was but he doesn't know anyting about celicas other then to send off for a blood test.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,063
    • Most Online (within 30 mins)
      7,748

    amnaarsal1989
    Newest Member
    amnaarsal1989
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...