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

Having even more food cut out...


Elizabeth Z

Recommended Posts

Elizabeth Z Newbie

I was diagnosed with celiac when I was 17. I am a 21 year old female and in the last year, I have been having many more issues than I have ever experienced. I just saw my doctor and he told me to begin a FODMAP diet. A lot of the foods included are ones that I already eat pretty regularly, minus lactose, which I am trying to cut out right now. I feel extremely limited in my diet already and with the holidays fast approaching, I am feeling very lost and frustrated. Truly any advice would be appreciated at this point!


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

It's true that a low FODMAP diet could help with your issues, so it is worth trying, but are you sure that your diet over the last few years has been 100% gluten-free? Do you eat outside your home, and in restaurants? If so, you may be getting small amounts of gluten contamination, which can build up over time and cause a celiac disease relapse. One way to figure this out might be follow up blood work, so another celiac disease blood panel, and possibly another endoscope to see if your villi healed.

Elizabeth Z Newbie
12 hours ago, Scott Adams said:

It's true that a low FODMAP diet could help with your issues, so it is worth trying, but are you sure that your diet over the last few years has been 100% gluten-free? Do you eat outside your home, and in restaurants? If so, you may be getting small amounts of gluten contamination, which can build up over time and cause a celiac disease relapse. One way to figure this out might be follow up blood work, so another celiac disease blood panel, and possibly another endoscope to see if your villi healed.

I had blood work done last Thursday and it all came back normal. I haven't even thought about doing another endoscope honestly...

Scott Adams Grand Master

This article might be helpful:

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,459
    • Most Online (within 30 mins)
      7,748

    MaryA Allen
    Newest Member
    MaryA Allen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @MTAC Welcome to the forum.  I am so sorry to read about your situation.  I'm a UK coeliac so I thought I'd add this  to Trent's and Scott's excellent posts. Here the UK my TTG test results frequently lag behind my other annual lab results.  I think the longest it took was a couple of weeks, but from memory on this forum I've read at least one other person had to wait three weeks or more.  I've never understood why this particular test takes so long to come back, but it does seem to be the way it is.  I wonder if my American counterparts on this forum have the same issue? Anyway,  it is dreadful that you weren't told, but I have friends and family in the healthcare sector and I know that staff are often so stretched, somethings are getting missed, despite their best efforts.  (It's happened to me, too -  I looked up some blood results recently on the NHS app to find that my cholesterol levels were elevated and yet my GP never told me.    I dread to think what they are now and I keep meaning to do something about them.)  Anyway, it is so good you asked for the blood test results and that will be an excellent habit going forward.  I've taken to getting my consultant to print them out now, or I print them out when I get home off the App.   I hope you get some more clarity in the next few days.  Going forward,  I recommend joining Coeliac UK - they do a wonderful App and a Food and Drink Guide that will make it easier for you to shop. Cristiana
    • Scott Adams
      To me it seems like a slam dunk diagnosis, and the actual confirmation should be recovery on a gluten-free diet. If her symptoms improve on the diet, it would be final confirmation that she has celiac disease--and likely DH as well.
    • lizzie42
      Thank you for all your help! We agreed with the pediatrician that if further testing is necessary we will reintroduce. Given all the evidence I would never put her out for an endoscopy even if recommended by the GI.  So today I'm purging the kitchen and cleaning.
    • trents
      The blistery rash is almost certainly dermatitis herpetiformis, a classic indicator of celaic disease and for which celiac disease is the only known cause. There really isn't much doubt that she has celiac disease given all the evidence so far.
    • lizzie42
      Thank you! Hers were much higher than 10x plus positive ema. Plus anemia, rash, low vitamin d. The GI appointment isn't till middle of April but the pediatrician said to go ahead and stop gluten as there is no question. We went ahead and she hasn't had gluten for about 36 hours. This morning her rash wasn't blistery for the first morning since it started. 
×
×
  • Create New...