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

Fear Of Getting Another Auto-Immune Disorder


JosieToo

Recommended Posts

JosieToo Explorer

I started having symptoms and was diagnosed with celiac disease shortly after a very bad virus. My doctor said that my celiac “gene” was very likely triggered by the virus and the toll it took on my body. As someone who was previously healthy and had never had any medical problems, it was shocking and scary to think that you can literally wake up one day to a major health challenge. Ever since then, when I get sick I get paranoid that I’m going to trigger some other unknown gene and end up with another auto-immune disorder. I know my risks are slightly elevated for other auto-immune disorders, which only amplifies the feeling. Anyone else experience this type of fear?


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

life  itself  throws  us  many  curves  in our lifetime...yes,  it  can be  scary  but  still happens. Life  happens  whether  we  embrace  the  challenges    or crumble  to them.. So I say  " I am  strong  , I  can handle  what  life  gives  me"...I  believe  we  all  are  warriors  &  can  take on  turmoil   when it  strikes.. Body, mind, & spirit , keep  them  three in  tip top  shape....

hugs

nvsmom Community Regular

(Hugs)  Try not to worry too much... Easier said than done, right?  Staying gluten-free will help keep autoimmune caused inflammation down which will help prevent the development of further AI diseases.  If you were continuing to eat gluten, you would be putting yourself at a greater risk.  Unfortunately you do have a slightly higher than normal risk of developing more AI problems (diabetes T1 and Hashimoto's being the most common) but eating gluten-free will help to lower that risk.

 

Another thing, most of us who have other AI diseases developed them during the years or decades that we were living as undiagnosed celiacs.  I personally had my two other problems crop up after a couple of decades of eating gluten when I should not have been.  I am pretty confident that if I continue to treat myself well, that I will not develop further problems.  KWIM?

 

Just live well.  Be aware of the symptoms of hypothyroidism and diabetes, but don't dwell on it. Even if you were eating gluten, chances are that you won't get them, and since you are gluten-free, your risk is even less.

 

Best wishes.  :)

icelandgirl Proficient

I do get this. It can be very scary to think about. I have celiac and Hashis. I think keeping inflammation down in your body can help keep you from getting other AI's. By staying gluten free you keep inflammation down. Take good care of yourself and try not to worry...The worrying is the worst. I tend to do this myself. Try not to dwell on it. Be thankful that you have your diagnosis and that you are treating it with diet every day. Your body is getting healthier every day. Like Nicole said, it's good to be aware of the symptoms of Hashis and diabetes...but that doesn't mean you will get them.

Big (((hugs))) to you.

brooklyngal Rookie

Celiac has definitely made me a little more anxious about my health. I recently was diagnosed with diverticulosis + low iron as well, so I've had to change my diet yet again because of both of those things. Sometimes I get sick of having to think about food so much! 

 

But as everyone else has said, the best thing to do is not worry. I'm trying to eat more whole foods now and do other healthy stuff like exercising, and after that if I still get sick, well...¯\_(ツ)_/¯

LauraTX Rising Star

I certainly understand the fear of something else going wrong.  I am almost 30 and pretty much have the body of an 80 year old, lol.  I have Celiac, Lupus, and Common Variable Immunodeficiency, and the way I cope with my fear of things going out of whack is to just take care of my current problems to the best of my ability.  I am so anal retentive about eating gluten-free I am probably the model Celiac patient to the extreme.  For my other issues, I do treatments and medications on schedule, eat right, etc.  Also, pay attention to your body and don't hesitate to get things checked out.  Better to have a false alarm than to sit on something until it is really bad.  

w8in4dave Community Regular

I remind myself not to worry about something that may or may not ever happen.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lovinlifeafter60
    Newest Member
    lovinlifeafter60
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
×
×
  • 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.