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

Pos For Celiac Gene`s, Undiagnosed, Lots Of Symptoms


animmunetarget

Recommended Posts

animmunetarget Newbie

I am new here and looking for some information. All of my life I have had problems with my stomach. I have had occasions where I had chronic diarrhea and weight loss. I have been anemic off and on all my life.  Over this past year things have gotten worse and I have been looking for some answers.

 

Last fall I was having a lot of the chronic stomach issues along with being diagnosed once again as anemic. My regular doc was concerned so he sent me to see a Gastroenterologist. I have had elevated Liver Enzymes for over 10 years now, they seem to roller coaster. The hep doc suspected Autoimmune Hepatitis and did a liver biopsy back then, it was near normal. So now I just have my levels monitored in case it gets worse and I would need treatment.

 

But, back to the reasons I was sent to the Gastro Doc last fall. Being that I was anemic the doc was concerned with possible stomach bleeding. So I had an Upper GI Endoscopy, which revealed a lot of Bile Reflux. Not Acid Reflux, but actual Bile from my liver, the two are different. I had a Ultrasound of my abdomen in which they spotted several small cysts on my gallbladder. The doc felt it was best to leave it intact and just watch for growth. I also had a HIDA Scan and my Gallbladder was high functioning so they did not want to remove it. The next test was a Colonoscopy but I was in the process of moving and I never went to get that done. My major abdominal pain subsided so I just basically decided to wait on that unless I was showing more symptoms. Fast forward to March of this year, I decided to get my DNA tested to see what Medical Issues I was at risk for. I was actually hoping it might shed some light on some symptoms that I had. Well lo and behold it came back that I am very high risk for Celiac Disease as well as Ulcerative Colitis and Lupus. This has me concerned. I have a son and we are also getting his DNA tested to see if he shows the same markers and genes for these diseases as he has multiple stomach issues as well. My son is 20. I am wondering now if maybe I should take these results to my doctor and have them specifically test for Celiac Disease. I have trouble with my food digesting at times. For instance corn is a big one that seems to just go right through me and sheds itself undigested. I have been told in the past that I had a spastic colon.

 

Lately I have been having an increase in Migraine Headaches and I wonder if they could be related to Celiac? Any thoughts? I also have a lot of joint pain in my left knee and some swelling there as well. My son and I have discussed it and thought about trying to go Gluten Free but we know from what we read its really hard to do. Should I just go to the doc first and present her with my results and ask for testing or should we try the diet and see if we notice any improvements? My sons is so bad it has interfered with him working his job, he lost his last job due to the illness, because he was sick with his stomach so much. We need to find some answers. Any thoughts?


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

About 30% of the U.S. has the genes for celiac, but do not have the condition itself (as seen here Open Original Shared Link ). Certainly, the genetic test shows that you may develop it, but you may not develop it.

 

From what you've been though, it would be a good idea to get tested while you are on gluten then try the diet regardless of the results. They consist of the celiac panel of blood tests and a endoscopy with a biopsy.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,161
    • Most Online (within 30 mins)
      7,748

    DAR girl
    Newest Member
    DAR girl
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...