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

M.e.n. Syndrome

Jodele

By Jodele
in Related Issues & Disorders

Recommended Posts

Jodele Apprentice
Jodele
Posted

My mom called me yesterday and was frantic. She went to her endocrinologist and he told her that he thinks she has M.E.N syndrome. What I read about it is that it hits any gland in the body and makes tumors in them. It is genetic so my sister and I most likely have it. Both my sister and I got Graves's disease when we were 30 and I have celiac. My sister has it too but don

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tBar-251 Newbie
tBar-251
Posted

Wowzers! This must be really shocking and upsetting.

I found this very informative website (in plain English, not "medical-ese").

Open Original Shared Link

This looks very serious -- but not a death sentence; you need to become very in tune with your body and get checked a lot. It seems like a relief that "they" (medical community) know a lot about this condition so you should be able to get a lot of support. Good luck. Keep us posted.

tBar-251 Newbie
tBar-251
Posted

Also, I think you and your sister should get tested ASAP because there's "only" a 50% chance you have it if your mother has it. Better to know one way or the other, rather than worry about the "what if..."

horsegirl Enthusiast
horsegirl
Posted

Jodele,

Don't know if you've seen this web site, but it has some information on M.E.N. syndrome, as well as some links to other web sites:

Open Original Shared Link

Also, there's a rare disease database online you could check out that might have something helpful:

Open Original Shared Link

Good luck to you & your family!

Martha

Jodele Apprentice
Jodele
Posted
  • Author

Thanks for responding to me. My mom is going to get her results tomorrow. Her doctor did not want to discuss it over the phone and wanted to see her in person. lol. Yes my sister and I are going to be tested as soon as my mom is dx with it. We all believe that this is what is wrong with her. It's just strange that my sister and I both got graves disiase when we truned 30. thanks agian for the web sites that you found. Will post what my mom finds out.

Jodele

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. RMJ
      - RMJ replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal. Were any other antibody tests run?
    2. trents
      - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

      The practical takeaway: "For people who care about celiac disease, especially families who have children at higher risk, the findings highlight the importance of self-advocacy." It's the only parameter that the affected individual or their family members have control over. We need to learn to become "politely pushy" in order to get proper testing done when...
    3. Russ H
      - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility...
    4. Scott Adams
      - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

      This technology is currently years away, as it will need to go through an extensive FDA approval process.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,002
    • Most Online (within 30 mins)
      7,748
    T Urqu
    Newest Member
    T Urqu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • RMJ
      Positive biopsy

      By RMJ · Posted

      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal.  Were any other antibody tests run?  
    • Russ H
      Positive biopsy

      By Russ H · Posted

      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      Positive biopsy

      By Scott Adams · Posted

      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Help understand results

      By trents · Posted

      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Fruits & Veggies

      By Jordan Carlson · Posted

      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
×
×
  • 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.