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Mommyx2

By Mommyx2
in Related Issues & Disorders

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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? 

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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.  

 

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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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