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Blabbing To Everyone I Know


Robina

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Robina Contributor

Before I went gluten free... my symptoms were so weird... and fierce... but now most seem to be manageable... the emotional aspect (and the anger I feel about this disease not being recognized the way it should be) has been the hardest for me to deal with... but basically I am talking about Celiac's with every person I meet... and in my profession... I meet new people every day... So I guess that's how I'm dealing with the emotional aspect...

On a similar yet different note... my brothers came up to visit today... and I talked with them for hours... explaining to them that the disease is hereditary... told them what my symptoms were... but also explained that the symptoms vary from person to person... and then I told them specifically how going gluten free has helped me (e.g. the symptoms that went away or greatly reducted)... I wanted them to realize that due to the fact that they also experience similar GI problems, etc... that they should be tested... especially since it's a simple test and then the dietary changes... one of my brother's decided he would forego the test and just try the diet for awhile (no medical insurance like me) while the other brother's wife gave me her email address and told me to send her the info on testing, etc... and the link to this board so she can force him to look into this further... lol...


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mouse Enthusiast

Robina, I totally understand about babbling. I babble to everyone that will give me an ear. When we go out to dinner, my husband has to remind me to talk about something else LOL. I guess, even after being gluten-free for over 2 1/2 years, that I just don't want others to end up like I did. If my babbling helps a few people then it is worth it. So may your always talking about it help others.

kbtoyssni Contributor

I talk about it all the time, too. Not too much, but just enough so that most people I come in contact with on a daily basic coud define celiac and some of the major symptoms. I don't want to get annoying, but I think it's important that people are aware of the disease. A friend mentioned to me several years ago that she had celiac. I was curious about it so I looked it up at the time and then forgot about it. Years later I went on an elimination diet and realized wheat was a problem. I never would have made the jump to celiac if I hadn't heard about it several years before. And I'm sure I'd still be sick now because my doctors certainly weren't going to make the jump to celiac, either.

flagbabyds Collaborator

yeah i completely agree with the babling thing i talk about it ALL the time, especially when i am away from home at camp and such, the people i lived with at camp now all know so much about it it's pretty cool how many lives you can change with just talking about it.

emcmaster Collaborator

Hi Robina,

It is so tempting to talk about celiac to everyone you know and meet, isn't it? One thing I think we have to remember is that while we find it interesting, most other people don't. My husband has had to pull me aside (discreetly, of course) and let me know that I'm talking about it too much when he sees our friends' eyes glaze over.

It's human nature to talk about what is going on in your life with your friends and loved ones, and being gluten-free is a BIG part of our lives. I try very hard to gauge people's reactions to the short, simple answer I give for what celiac is. If they ask involved questions, I'll tell them a little more. If they ask questions that come off as them just trying to be polite, I say very little.

I guess I try to think of it the same way as someone who had cancer and was undergoing treatment. If someone asked them how things were going, they'd probably keep the medical terms to a minimum and just give an overview. I try to do the same thing because as interested as I am in my disease, I know 99% of my acquaintances are only being polite when they ask.

Just a little unsolicited advice. :)

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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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