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

New ‘member of the club’


Pam Couling

Recommended Posts

Pam Couling Newbie

Hello All!
     Thank you all for the valuable information I’ve gotten from this site!  I’m new to this particular ‘club’, but not to autoimmune diseases.  I was diagnosed with Rheumatoid Arthritis almost 20 years ago and am currently marginally controlling it.  Aside from that I’m 66, active, have always eaten a very healthy diet, and in otherwise pretty good health. In June 2022, a few months after a nasty-but not hospital severe case of Covid that caused an RA flare, I very suddenly began suffering severe constant abdominal pain, cramps and the worst diarrhea I’ve ever experienced.  After the circus of figuring out what was going on I began the adventure of purging gluten from my diet.  When I am gluten free I am blessedly free of symptoms which prevent me from venturing far from the WC, much less the house!  As other newbies have probably realized in short order, that’s not as easy as simply avoiding bread…. Which leads me to my query; WHO can you trust?  WHICH resources are reliable and accurate?  I have downloaded several gluten detector product scanners, they disagree with each other.  I spend inordinate amounts of time looking up product websites and calling manufacturers to ask them to clarify claims.  I purchase very few ‘convenience’ or snack type foods so I’m not as concerned about that.  It’s things seasonings, dressings, oats and other whole non gluten grains.  And like walnuts!   I finally found in my area a bag of walnut halves and pieces that I purchased in Kroger, Kroger brand with those magic words GLUTEN FREE boldly emblazoned on the front label at the top of the package.  In my excitement I was remiss in examining the fine print below the ingredient list which stated that these were processed on equipment that also…bla bla bla…..wheat.  I found that the next morning after a nasty return of the symptoms and an exhaustive examination of the previous days diet.  The only thing new in weeks were the walnuts.  A call to the 800# yielded no assurance that the product as packaged is actually gluten free even though the very polite young representative assured me that WALNUTS are gluten free, they just can’t guarantee that the processing didn’t allow cross contamination.  Why then, I asked him, are they labeled GLUTEN FREE if they might NOT be?  Well, he answers, because WALNUTS ARE gluten free…it’s the processing/packaging that we don’t have control over.  Sigh.  So they took the products codes, my name and email and will “forward my concern”.  Anyone else out there experiencing this type of thing?  Just CELIAC is a major adjustment.  And once I conquer the beast at home where I’m (sort of) in control of what I eat (if labeling is accurate), how do I go about dealing with it in circumstances where I have no control of what goes on in the kitchen?  “Oh no, we don’t use flour to thicken our soup…” ???   
     Thank you for reading my rant.  I’ve come to grips with the celiac, it is what it is and I’ll deal with it.  Maybe I’ll be able to help someone else walk through this some day.  Right now I’m just hoping to streamline the process of protecting my intestines so I’m not spending so much time figuring out what I can and can’t eat.  I’d rather be hiking than sitting at my computer or stalking grocery shelves(actually, I already detested shopping and this has just added to the chore).  Thankfully hubby is very supportive and has joined the adventure, trying chick pea pasta and etc.  Thank you in advance for any suggestions you all may have!  Pam


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Welcome to the forum!

If something says gluten-free on the label it normally is, but the example of the walnuts you gave is pretty odd. If there is a real possibility of contamination in their packing facility then they should not be labelling it gluten-free.

This article may be helpful:

 

Did you ever get tested for celiac disease, or did you go gluten-free on your own?

Pam Couling Newbie

Tested.  Also confirmed by rheumatologist.  At onset of sx was away from home and avoided gluten in desperate attempt to identify cause.  Worked.  After returning home some weeks later went through the testing process.

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Cat M's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weakly positive DGP IgA

    2. - Wamedh Taj-Aldeen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Positive TTG antibody and negative EMA antibody

    3. - Cat M posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weakly positive DGP IgA

    4. - trents replied to LynnM's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Is "Shield" skincare products gluten-free?

    5. - Ginger38 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Abnormal Labs, Should I Be Concerned?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,563
    • Most Online (within 30 mins)
      7,748

    Judi Ronan
    Newest Member
    Judi Ronan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wamedh Taj-Aldeen
      I recently reviewed a patient with a positive tissue transglutaminase (tTG) antibody but negative endomysial antibodies (EMA). The patient is asymptomatic, and duodenal biopsies—taken while on a normal gluten-containing diet—were reported as normal. Given the discordant serology and absence of histological changes, I understand that the probability of coeliac disease is low. However, I would appreciate your guidance on the following: Is routine follow-up required in such a case? What is the risk of progression to overt coeliac disease in the future? Would HLA DQ2/DQ8 typing be useful here to help guide long-term management or exclude the diagnosis confidently? I would be grateful for your thoughts.
    • Cat M
      TTG IgA <2 Ttg IgG 3 DGP IgG 4 Total IgA was not performed. My GP thinks I am gluten sensitive and do not have celiac. I would like to consume gluten for a few weeks and retest, or consult a gastroenterologist now. I am symptomatic, which is why we tested. I do have the HLA DQ2. Is it possible this is a false positive? What would cause that?
    • trents
      @LynnM, when you say, "today, his numbers were high", what numbers do you refer to? Are you speaking of celiac antibody scores? Can you be more specific and can you post the test names, the numbers and the reference ranges for the tests? So, I am understanding you to say that topical exposure to gluten doesn't cause him GI reactions but ingestion of gluten does but at the same time you are attributing the "high numbers" to the topical exposure?
    • Ginger38
      So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done damage or something this past year 
    • LynnM
      Thank you Scott. My son doesn't have a reaction topically, only when ingested. Interestingly though, the doc told us the face cream getting gluten into his bloodstream doesn't do the damage akin to when gluten is ingested. He had no reaction when using the face cream, it only presented in blood-work. I'm hopeful from all the comments today and will wait for the GI doc to reply. If he is cleared to use it, I will encourage SHIELD to get a gluten-free certification 
×
×
  • Create New...