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. Rosalie P
      - Rosalie P posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Oat &gluten free eczEMA MOISTURIZER

      Looking for recommendations, most have “unsafe” oat ingredients
    2. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      35

      Insomnia help

      @cristiana, milk is also a good source of magnesium, another very important nutrient in nervous system/mood health.
    3. trents
      - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      11

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      @cristiana, no, I'm asking if, when you eat out, do you actually experience symptoms of gluten exposure apart from any consideration of blood antibody test scores?
    4. trents
      - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Like you, I was a silent celiac. I was largely asymptomatic insofar as GI symptoms were concerned. The first real evidence, retrospectively, of having celiac disease was the development of mildly but persistently elevated liver enzymes which initially was discovered when I tried to donate blood at age 37. That was in about 1987. Of course, my PCP checked...
    5. Known1
      - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Reverse Osmosis (RO) Water

      Initially I was going to re-post all of the threads that have people stating they drink or recommend RO water. There are just too many to post, so I'll recommend using the search feature here to find them all. There are currently 4 pages worth of posts with people mentioning or recommending RO water/filtration systems. Granted, some of the search results...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,502
    • Most Online (within 30 mins)
      7,748
    Rosalie P
    Newest Member
    Rosalie P
    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

    • Rosalie P
      Oat &gluten free eczEMA MOISTURIZER

      By Rosalie P · Posted

      Looking for recommendations, most have “unsafe” oat ingredients
    • trents
      Insomnia help

      By trents · Posted

      @cristiana, milk is also a good source of magnesium, another very important nutrient in nervous system/mood health.
    • trents
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By trents · Posted

      @cristiana, no, I'm asking if, when you eat out, do you actually experience symptoms of gluten exposure apart from any consideration of blood antibody test scores?
    • trents
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By trents · Posted

      Like you, I was a silent celiac. I was largely asymptomatic insofar as GI symptoms were concerned. The first real evidence, retrospectively, of having celiac disease was the development of mildly but persistently elevated liver enzymes which initially was discovered when I tried to donate blood at age 37. That was in about 1987. Of course, my PCP checked me for all the hepatitis varieties but cold not find any reason for the elevated liver enzymes. I was also slipping into mild anemia by the time I was in my late 40's and had developed some occasional loose stool and oily stool. My PCP had no clue. I was really concerned about the liver enzymes as they were steadily increasing though never got to alarming levels. My PCP threw his hands up and said during one office visit, "I don't know why your enzymes are elevated. Maybe that's just the way your are." Well, that was not a satisfactory answer. This was about year 2000 and it was not well known that one of the atypical symptoms of celiac disease is elevated liver enzymes. In fact, it happens in about 18% of celiacs. Finally, I booked an appointment with a GI doc who tested me right away for celiac disease and I was positive, both for blood work and biopsy. Within a few months of eliminating gluten my liver enzymes had normalized. But it took 13 years to get a diagnosis. And by that time I had developed osteopenia. Sorry for the long-winded story. My point is, celiac disease can be very slow in developing. By the time symptoms manifest themselves to the extent where they get your attention such that you seek testing, much damage can already be done to body systems. You and your son are very smart to be be pursuing this thing early in his life and let me encourage you, that whatever the next round of testing reveals, you continue to get testing done on a regular basis.
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      Initially I was going to re-post all of the threads that have people stating they drink or recommend RO water.  There are just too many to post, so I'll recommend using the search feature here to find them all.  There are currently 4 pages worth of posts with people mentioning or recommending RO water/filtration systems.  Granted, some of the search results are from this thread. For me, it causes major issues with my stomach and as mentioned, there is no way I will ever intentionally drink it again.  As we know, everyone's body is different.  I am certainly not looking for a debate, but do highly advise anyone considering RO water to do their own research. Consider starting with this Google search:  Is reverse osmosis water safe to drink long term?
×
×
  • 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.