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New Here. Not Sure If It's Celiac Or Gluten Intolerance


Abbizzy

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Abbizzy Newbie

Hi,

My name is Ann, I'm a 40 year old Aries who likes long walks on the beach....oh, sorry, wrong forum ;)

I do think I belong here...I either have gluten intolerance or Celiac's. I'm trying to navigate my way around this forum so please forgive any posting faux pas :) . I haven't been formally tested, but plan on going to University of Illinois, Chicago for a free blood test in October.

About 6 months ago I was googling my symptoms and self-diagnosed with Celiac's. I then forgot about it for a while, thinking there was no way I had Celiac's (this is when I thought it was so very rare!). About a week ago my SIL who is a dietician and I were talking about my Mom who was just dx with anemia. I mentioned that I too, am anemic and she immediately said that with my IBS and anemia I should be tested for celiac's disease and told me about the test at UIC (I'm a Chicago girl). I know that I have to actively be on gluten to test but I decided that since it's over a month away I would try a week gluten free...what an eye opener!!! I was free of my symptoms and felt great until some french bread and spinach dip called my name and an hour later I absent mindedly tasted my DD's pasta (actually did it twice in 10 minutes, once for each DD! UGH!). I am sick, sick, sick. Not exactly sure how I'll suffer through eating gluten for a few weeks prior to the test now that I've spent some time on the gluten-free side of life.

My 7 year old was dx with IBS at age 4 or 5 so I'll have her tested too and my SIL seems to think my Mom may have Celiac's as well so I'll have her call in for a consultation and hopefully get tested. My 8 yo dd doesn't seem to have any bowel issues, but if either: me, my Mom, or 7 yo have it, I'll have her tested as well.

I look forward to going through the posts on this community and learning all I can. So far, I'm not finding eating gluten-free to be difficult. Fortunately I cook a lot and my lunch out of choice is Chipotle Burrioto Bol. I'm just sad about the absence of Jimmy John's sandwiches and things wrapped in tortillas!

Look forward to learning about your community.

Ann


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curlyfries Contributor

Hi Ann, and welcome! :D

My DD was also dx with IBS (spastic colon) at a young age. Her symptoms disappeared during her teens, which sometimes happens, and then returned in her 20's. Now at 23 she has a host of other issues that I believe could be improved once she is gluten free ( she has just started and is still trying to find her way). I never knew about celiac until after I had been suffering from my own symptoms for a few years. It's great that you are able to discover this early.

BTW.......LaTortilla Factory makes gluten-free teff wraps. I steam them to soften them.Their web site has a store locator. I buy mine at Meijer's.

mftnchn Explorer

Welcome Ann, and lucky you to get in on free testing!

Hopefully having tasted of the better life, you'll be back regardless of your test results. You need to know that there are a significant number of false negatives, but a positive is for sure. If you don't eat gluten up until your test you are more likely to test negative.

Let us know how this all turns out. This is a great place for questions. Since often the same questions are asked repeatedly, try to get good at the searches and look first for your answers. That brings up a whole wealth of info that might be from people no longer active on the board (healed and moved on, LOL!)

gfp Enthusiast

I almost never ever say this BUT.....

I think you should consider going onto gluten for the rest of the month....

You were not gluten-free for so long but obviously it worked well....

If you get a positive blood test it will be simpler (although as noted you will probably become gluten-free anyway) but in your particular case you have been gluten-free such a short time and the test is only weeks away.

The reason I say this for you is because after another 4 weeks going back onto gluten is likely to be much worse.... if your recovery is good and your test negative you most certainly won't want to go back in another 4 weeks.

Note: I said consider.... I'm not saying you should but I think you might want to look at what you would do if the test is negative and you were gluten-free before the test. Your SIL seems clued up, perhaps you can also get her input...

(and really I rarely say this but your case is quite specific regarding the testing and timing and most specifically you won the lottery on the free testing so I would add that to the mix on weighing up how important the test results are to you.)

Nothing is stopping you testing negative and still going gluten-free but my thoughts are you shouldmake themost of the free test andnot compromise it???

Welcome to the board btw :D

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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