New ‘member of the club’

[Pam Couling]

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

[Scott Adams]

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]

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.