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

Newly Diagnosed


Goubs

Recommended Posts

Goubs Newbie

Hi there. I was diagnosed with celiac disease two weeks ago today. I am really struggling to come to terms with it. I am eating completed gluten free but don't feel better as yet I keep getting pins and needles constantly is this normal? Also I am petrified about the long term effects of this disease everywhere you look it's states about cancers and diabetes which runs in my family anyway and also other autoimmune diseases. I am a very anxious person anyway and any advise or reassurance would be gratefully received. Thank you


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome! Here is a place to start in our forum.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

LauraTX Rising Star

Welcome, Goubs!  The good news is that most of the bad effects from Celiac disease are from an untreated disease.  So as long as you continue to strictly eat gluten-free, you greatly reduce the risk of those things.  It is going to take a while to feel better, the damage in your small intestine has to heal up and it may take a couple of months depending on how bad the damage was in the first place.  Read around that thread linked to you and feel free to use the search function on the website to look up specific things, and ask any other questions you may have.

Goubs Newbie

Thank you both very much.

1desperateladysaved Proficient

I am recovering from 30+ years of celiac damage which had been undiagnosed until nearly 3 years back.  I think that one can actually fare better than people without the disease, because we are motivated and learn to make changes in our diet to preserve our health.  Making a few mistakes early on in learning, help to assure and reinforce the need for absolute awareness.  I feel much better than I did the 30 years since I was struck and have a hope for the rest of my life.  It is difficult at first and it can be a long process, but getting better is exciting and worth the effort!

 

Dee

nvsmom Community Regular

Welcome to the board.  :)

 

Like the others said, recovery can take months or years so be patient. Some symptoms, often bloating, will resolve in the first week or two, but others like neuropathy, pain and cognitive issues can take some years to get better. Be patient.  And be kind to yourself - about 30% of celiacs experience a withdrawal so they may feel worse before they feel better. Hang in there if this is you.

 

Those other illnesses that you mentioned mainly apply to undiagnosed celiacs. Once you are on the gluten-free diet for some time, your chances of cancer drop to normal. Your chances of developing type 1 diabetes will be a bit higher than that of most people but you can reduce that by staying gluten-free.

 

Best wishes.  :) 

Archived

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

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

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

    JBeckmon
    Newest Member
    JBeckmon
    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

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • 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.  
×
×
  • 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.