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Happy Experiences

anabananakins

By anabananakins
in Coping with Celiac Disease

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anabananakins Explorer
anabananakins
Posted

I'm at the end of day 3 of a month long holiday in the US. I went gluten free just under 4 months ago. It hasn't been too hard so far, but that's because I live alone, haven't had any social events I couldn't control and am lucky to have a reasonable number of eating out places to choose from that offer gluten-free meals (though that said, two of them have glutened me. One I won't return to, the other I tried a second time and avoided the 'gluten free' bread; that time I was fine.

Anyway, I was worried about this trip, I really didn't want to eat snacky type food the whole time. But I did what I could - read up heaps of places and knew where and what I could eat. So far since i've been in LA I've eaten at In n Out burger, protein style - fine. Chpipotle burrito bowl - fine (no lettuce, I watched and that seemed the best chance of cross contamination). Even ate at the mexican place at the Universal Studios city walk and I was fine. I was a bit careless about that - I checked the corn chips and ordered things that were safe by ingredient but didn't say anything about having to be gluten free. But I'd read the menu thoroughly while waiting for our table and the chances for cc seemed limited so I rolled the dice - and I was fine.

I do understand better now the newly diagosed's distress over shopping. The gluten free stuff at the supermarket near my hotel is all mixed in with the regular stuff and it's a big store. In Australia they put that stuff all in one aisle, though there are gluten free by ingredient items elsewhere. If I was to do this thoroughly it'd take me forever! I still haven't found the bread section, though that was more out of curiosity than any intention of buying it and I can't do more than duck in and out of the bread aisle since the massive bagel selection nearly reduces me to tears. Much of the time involved (and the envy!) comes down to the amazing variety of (regular) products compared to back home. For example, we get two varieties of pre-made frosting - betty crocker's chocolate and vanilla. I swear there must have been 20 varieties in this store! I was mesmerised - my friend had to drag me away. Plus larabars at 10 for $10...ooh!

Sorry, I digress. What I really wanted was to say thank you for all the great advice from this board. If I didn't have all your posts to read I wouldn't have known about safe places or what to check for. It would have been so much harder, I can't imagine. It takes a LOT of research but it is possible to travel around like this - and all by public transport too - and eat safely and a variety of food.

And it's not my first trip to the US but as always I'm struck by just how friendly everyone is, so thank you for that too :)

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
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      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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