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

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

  • 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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.