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"Super Sensitive" Celiacs.....


jerseyangel

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GottaSki Mentor

Yep. No one told us when we were younger how tough we would have to be, or we would have trained harder (although I got some pretty good training along the way -- and one kind person who took me under her wing because she understood :wub: ) Funny how those people stand out in our lives -- that one person, and my 8th grade teacher probably saved my life.

The only people who understand celiacs are celiacs. I hope your path gets easier and your coworkers more understanding. May you find someone to take your side, to hold your hand and guide you through the celiac doldrums. I would if I were there, because I KNOW! :)

Well said Shroomie!!!


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dilettantesteph Collaborator

When I first began the forum we thought I might have got ideas from the Super=sensitives and "copied them". Now I believe that I found my reactions, because you helped to define them. I was super sensitive all along and knowing it could happen didn't change that.

My symptoms 6 months later are more undeniable than ever. I keep marveling that I really am acting like a celiac. I keep wondering how nobody around me thinks it seems like too big of deal physically. Just keep doing your job until you drop dead? Really.. "It is just my choice to follow the diet?! The stress is really hard to take lately. Even with physical improvement I long for markers of progress and someone who will ask how it is going and truly want to know. Someone who will counsel me maybe I shouldn't eat something. Someone who does not eat it infront of me.

Sorry, I didn't make it to the end of the thread, yet and must sign off.

It is hard coping with celiac disease, and even more so when you find out that you are super sensitive. There are few who understand and many who tell you that you couldn't possibly be reacting to what you are reacting too. I am lucky to have supportive doctors and to have found other super sensitive celiacs who have been very supportive. I would love to pay it forward and I offer you any help you need.

  • 1 month later...
teruff Newbie

Jerseygirl I had the same problem! I've been dealing with celiac disease for about 6 years and I went through the same thing. I most definitely have become more sensitive through the process but my anxiety has gone down dramatically. The only time it ever flares up is if I eat gluten. As with the symptoms I also have noticed that they aren't as severe (unless I eat large amounts of gluten) but they do drag. I will feel tired for a longer period of time and be bloated for longer :angry: . It also KILLS my work outs, I sweat about 50% more and it is so much harder to get through.

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    • Ann13
      Not everyone will be allergic to whatever they're using in food. There is another forum re people who are posting they have vocal cord & throat issues after they eat breads & pastas which stopped after they removed those foods from their diets. Same as me...gluten doesn't react as gastrointestinal it reacts orally. Which is why I'm saying ensure all your food isn't what you're having a reaction to.  ...& I used Cornflakes as an example because some gluten free people would assume it's gluten free but if they're allergic to barley they will have a reaction...nothing to do with their inhaler.  You're missing my points a lot & frustrating so I'm done commenting. You really need to ensure your food isn't what's causing the issue. I am checking with symbicort manufacturer to check their ingredients.  Good bye... I'm done with this. 
    • trents
      I certainly agree with all that. However, you also mentioned cornflakes with barley malt but that would obviously not be gluten free since barley is a gluten-containing grain. And the chemicals they spray on grains would affect everyone, not just those with gluten disorders. I'm just trying to figure out what this thread has to do with the main subject this online community is focused on. Is the point of this thread that having a gluten disorder makes someone more susceptible to reacting adversely to inhalers? That could be but it may have nothing to do with the inhaler having gluten. It could have to do with, say, having higher systemic yeast counts because the celiac community generally suffers from gut dysbiosis. So it would be easier for celiacs using inhalers to develop thrush.
    • Ann13
      Re food,  I said the gluten free thing isn't necessarily about gluten itself, but chemical sprays they use on GRAINS which cause allergic throat & vocal cord issues regardless of the inhaler you're using.  Your issue may not be the inhaler but eating gluten free food that still will bother you because they have been sprayed with certain chemicals. Barley & oats cause vocal and throat issues with me as well as gluten free flours. We didn't have gluten issues in the world yrs ago...the food changed somehow or they're using sprays that cause reactions in some people.  Re inhaler: Symbicort is registered as gluten free but companies can change their ingredients at any time so you may want to check with the company who makes it and get an ingredient list.  I don't believe I'm reacting to the inhaler...I believe it's a gluten free pasta I've been eating so I'm taking it out of my diet. I've used the inhaler for over 1 year and no problems up until now so I suspect it's the pasta. 
    • trents
      There could be other reasons you are reacting to the inhalers. There is no concrete evidence to believe they contain gluten. Anecdotal experiences can be misleading do not establish fact.
    • trents
      Are you saying you believe there is gluten in the inhaler products? I mean you talk a lot about reacting to foods that are supposed to be gluten free but this thread is about inhalers. 
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