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

Please help!

Mommyx2

By Mommyx2
in Related Issues & Disorders

Recommended Posts

Mommyx2 Newbie
Mommyx2
Posted

Hi, I'm writing in dire need of some help. My husband was diagnosed with Crohn's Disease in 1990, he was 21.  He is now 48 and we're two years into the diagnosis of liver cirrhosis/being put on liver transplant list.. Were in the process of medical records being switched over to the VA due to my husband losing his job. The GI Clinic from the VA today said, Has anyone ever told you that you have Celiac Disease? We replied no. He said the blood test range isfrom 1-15. And my husband was @ 300... Please help, Is it totally possible he has never been test for Celiac in all these years? Through the military and into the private sector? 

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Well, it is not something routinely tested for. But if there is a record of a test that strongly positive, it should have been diagnosed (and Crohns might not have been correct as a diagnosis). You said he was in the military. Was that at the time of the "Crohns" diagnosis?

Celiac disease is an exclusion to joining the military in the US. If you are already in, you might be allowed to stay, depending on your occupational speciality (rating). If you were combat, you will get a medical discharge. Crohns is not a medical issue to the DoD. Just saying...

trents Grand Master
trents
Posted

10-15  years ago there was not much general awareness in the medical community about celiac disease. I was diagnosed 15 years ago with celiac disease and what actually led to the diagnosis was I had mildly elevated liver enzymes for about 15 years previous to that which could not otherwise be explained. It all started with a rejection of my donated blood by the Red Cross because my liver enzymes were out of range. They checked me for all the hepatitis strains and I was not a drinker, didn't do street drugs, etc. My family doctor was clueless. I finally made an appointment with a Gastro doc who checked me right away for celiac disease which, of course, was positive. I did some research and found that about 18% of Celiacs have elevated liver enzymes. When I started eating gluten free my liver enzymes normalized and there seems not to have been lasting damage. You have a heart breaking story. I am so sorry. I have prayed that your husband will get a liver in time and that all your needs will be met.

I'm wondering if you have any legal grounds for pursuing a law suit on the basis of medical negligence? If you search the net you will find that it is now well known that many Celiacs have elevated liver enzymes. Here's an example: Open Original Shared Link And this article is from 2012.

If the liver is stressed too hard for too long, cirrhosis can result. Not trying to tell you what you should do. Just something to think about.

Mommyx2 Newbie
Mommyx2
Posted
  • Author

Thank you so much for your reply...were both still just a little stunned at this point.  It seems like the hits never stop. 

Blessings...

Jmg Mentor
Jmg
Posted
14 minutes ago, Mommyx2 said:

Thank you so much for your reply...were both still just a little stunned at this point.  It seems like the hits never stop. 

Blessings...

I don't have anything to add but my sincere best wishes. It's an awful story. I wish you both the very best of luck. 

cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you are all struggling with this.  

My niece was diagnosed a few years ago at the age of 19 with Crohn's.  She tested negative on the celiac panel twice.   She did a few endoscopies and colonoscopy, but the pill camera caught her Crohn's.  Does that mean that she will not develop celiac disease?  No.  She will need to be checked periodically.  Though her current Crohn's treatment could help any celiac issues for now (suppressing her immune system), she could develop celiac disease in a few years or when she hits 40.  It can happen at anytime in a person's life.  Anyone who has an autoimmune disorder can develop another one too.  Perhaps this is the case with your husband.  

My heart goes out to you and I wish you the best.  Please encourage the rest of his family to get screened for celiac disease.  This is the one autoimmune disorder that is definitely genetic.  

 

Archived

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

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


  • Member Statistics

    • Total Members
      129,436
    • Most Online (within 30 mins)
      7,748
    Mom Boss
    Newest Member
    Mom Boss
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Rosacea

      By Scott Adams · Posted

      You may want to go to a dermatologist to see if it might instead be dermatitis herpetiformis, which is the skin version of celiac disease. Here are some articles on Rosacea and CD:    
    • Scott Adams
      nuts.com -- no longer Celiac safe?

      By Scott Adams · Posted

      Tierra Farm is a sponsor here, but since you brought them up I wanted to mention that they have a 20% off coupon code this month: GF20
    • trents
      Iron supplements - Bowel upsets

      By trents · Posted

      Concerning dosage, I found this: https://patient-info.co.uk/sodium-feredetate-190-mg-5ml-oral-solution-88092/summary-of-medicine-characteristics Age 6 – 24 months: 12.5 mg Age 2 – 5 years: 20–30 mg Age 6 – 11 years: 30 – 60 mg   But these dosages are in mg, not ml.
    • sh00148
      Iron supplements - Bowel upsets

      By sh00148 · Posted

      Thank you. I’ve also just looked on the NICE website and it recommends a much lower dose for her age. She’s currently take 7.5 ml in total a day and the recommendation is 4ml and if not tolerated she should try alternate days. It may explain why she’s has such a loose bowel. I’m not concerned about the black poo, but more the frequency and consistency. It’s not fair on her. She has been saying she feels a little sick today so that may be a side effect… I never know with her as she had such bad tummy pains and issues before she was diagnosed. Her levels were at the highest possible and she was vomiting regularly so she often talks about sick. 
    • trents
      Iron supplements - Bowel upsets

      By trents · Posted

      It is "chelated" to improve absorption but not buffered from what I can tell. What she is taking is an appropriate pediatric iron supplement product. By the way, it is normal for iron supplementation to turn poo black. That is not a worry per se. But iron supplementation can cause an upset tummy. Iron can irritate the mucosal lining of the tummy and the gut. Is she complaining of pain or discomfort? The irritation is probably causing her to frequent toileting. Check with your physician about a buffered iron product for children. "Slow iron" products (you can get them over the counter) are buffered and help reduce irritation. Not sure if they are appropriate in dosage, however, for children and if you cut them you destroy the buffered coating. But I certainly would get her B12 levels checked if you haven't. 
×
×
  • Create New...