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Canadian Celiacs Common Complainants
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3 posts in this topic

Dear Members,

I am a Canadian researching Celiac. I have been unable to discover three things through websites dedicated to Celiac and through journal articles pertaining to Celiac. As you can tell from the questions I am not researching for medical purposes. I am trying to gather information for a freelance article and also for a marketing research project.

As I read about celiac, especially in medical journals, I find little concerning the psychological or societal ailments faced by suffers. Instead I have discovered a lot about physical ailments suffers face. I am hoping that you may take the time to post a response to my query or email me directly to fill in the blanks. The questions I have are:

What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

What are the common complaints?

i.e. about Gluten Free products?

What social stigma and limitations?

Any help will be greatly appreciated.

Regards,

Michael

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What obstacles do people with Celiac disease face?

At Work/University - The biggest obstacle is not being able to eat when friends/co-workers go out to eat. I refuse to eat out anymore (unless it's lobster) due to such a high risk of gluten contamination. So when I go out to eat I just order a drink and that's it. I will usually eat before or after I go out. The odd time I will bring a meal with me and heat it up.

At home - The biggest obstacle is making sure none of my food gets contaminated, since I am the only celiac in the house.

What are the common complaints?

Trying to find gluten free mainstream products (e.g. mainstream products that use dedicated lines).

Gluten free products are expensive!

What social stigma and limitations?

If I go out (and usually going out involves being in a place where people are eating), the topic of my diet and me being celiac almost always come up. I have to explain it all to new people and people are always asking why I'm not eating and why I can't eat that. I actually don't mind explaining the diet to people but sometimes I just get tired of talking about myself all the time, but people are just curious I guess.

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Yes, going out is a big problem. I seem to just get a restaurant educated and then it will change managment and menu, and I'll have to look for another place. It's really stressful at times as my hubby refuses to go and get a lunch if I can't eat. That's a real problem when we live an hour from town and spend several hours shopping, appointments etc. Believe it or not, this diet does cause conflict in the family. Not only about eating out, but also how well gluten bread and cookie crumbs get cleaned up etc. We Celiacs tend to get a bit paranoid and the family members get defensive. Not a good combination. :(

One of my big beefs is the labeling of ordinary foods. There are many foods out there that we could eat, but they end up putting things like 'natural flavouring' or 'modified starch' without specifying what it's made of. We need better labeling!

Time !!! You wouldn't believe how much time it takes to read labels, phone companies to varify, drive from store to store to find products, (not to mention the extra gas expense), cooking and baking gluten free is so much more time consuming.

Being a member of a club that holds some of it's meetings at restaurants is a problem. Thankfully the kennel club has started asking me about safe places when they are planning. But the consession stand is still out during the dog shows. :(

Explaining to family and friends why you get nervous about staying at their homes when traveling, or for that matter, avoid travel altogether. It's constantly worrying about something that is so basic to living as "Food"!

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    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
    • gluten free, oat free, egg free breakfast ideas needed for 6 year old
      If she misses the hot cereal then try quinoa or amaranth as an alternative to oatmeal
    • I'm actually scared to go to the doctor and could use some advice
      I suspect I am dealing with vitamin deficiency, but I'm afraid that if I go to a specialist they're going to think I have MS. As a person with pretty bad health anxiety, I can't bring myself to make the appointments I know I should make. I presented to my GP about 9 months ago with fatigue and a bizarre tingly feeling in my lower left leg. I was also suffering digestive distress, but I've lived with that off and on my whole life, so that was the least of my worries. My blood tests showed that my B12 level was 280. They didn't turn up any other issues, but then again she did not order any other vitamin level tests, only thyroid and routine bloodwork. She called my B12 level "on the low end of normal" and put me on oral supplements. When we retested 6 weeks later, it was 1100 and she told me to drop it back because that was too high and too much B12 can cause health issues, too. I'm confused by that because I've read that it isn't possible to take too much. I started a new career in a new town, and simultaneously began to feel better. The fatigue went away first, followed by the tingling and other stuff. Still plagued by both extremes of digestive distress. Maybe I should also mention that I was diagnosed with GERD at age 29 and have been on PPIs for 10 years. At that time, nobody ever mentioned investigating my GERD at such a young age, just put me on the pills and said stay on them. A gastroenterologist concurred after a very brief office visit. Well, I can be bad about taking my medicines, so I got off the B12. I figured maybe my earlier issues were stress-related. Now my symptoms are back, but worse. I have tingling and some aching in the leg. I have a sensation in one spot on my upper arms like the skin is burning, but no rash or redness. I have the C extreme of digestive problem, only alleviated by taking lots of magnesium citrate capsules. Sometimes I feel easily chilled, like waves of goosebumps. I am working to get off the PPIs in case they are inhibiting my absorption of vitamins. My mom has had really bad IBS all her life, plus eczema, headaches, etc. I'm back on the B12 for about 5 days but have experienced no relief yet, however I do remember that it took about 2 months to feel better the last time. Getting ready to move, on top of being really scared about these health issues, is making me crazy. I'm only 40 years old!!! Here are my questions: 1. Do I go back to the GP and ask her to order a celiac blood test? I know NOT to go off gluten until I am tested. 2. Do I ask for a referral to a neurologist or gastroenterologist instead? 3. Do  I wait until my mom's gastro appointment next month, when she plans to ask for a celiac blood test? See if hers is positive? 4. Do I keep driving myself insane with the worry that I have a degenerative illness? Can anybody identify with any of this at all? 
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      I would hope they would check for the other reasons for the endoscopy results.  A GI might not check for all of those so you may need to check with your regular doctor to start that process.
    • Depression / anxiety issues
      The second link I gave you was to a series of online video courses, you can try those for free to see if its something you think might help. There are also a lot of worksheets you can download, the first link had some I think but there are plenty of others out there if you search online.  Finally I had another look and found this: http://www.getselfhelp.co.uk/step1.htm  Which looks like a decent 7 step program Obviously its not as good as a dedicated session with a CBT counsellor, but the above may give you some tools you can use, especially when your thoughts are spiralling into a destructive circle. You could also search to see if there's any group sessions in Melbourne, that's how the NHS delivers it, they would be cheaper and there's really no need for one on one CBT, because it's more about delivering knowledge of the toolset. I approached it very sceptically but found it of some use, although at the time I was still under the gluten influence so it never tackled the root problem. The game changing aspect of discovering this is that you now know why the psychologist sessions didn't hit the mark, how could they when the root of your depression was your illness? My sessions now are far better and more enjoyable than when I was under a gluten fog.  Aside from all this the other advice holds, eat well, exercise, get sunlight every day and the longer you're on the diet the better you should get.  Oh and at least NI put up a hell of a fight in the Euros, hope you got to see that down under!
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