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Bosque

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GottaSki Mentor

Mom, Property Manager -- currently awaiting the results of my biopsy to confirm celiac...been gluten free for 8 days. Praying that this is the correct diagnosis after years and years of docs looking at me with that ok, dear you are either nuts or depressed expression. I know that I have told at least 6 primary docs over the years that I get depressed after being sick for months on end, not sick because I'm depressed. This past year has been the worst of all...horrible bloating, achy joints, weight gain, extreme intolerance of heat (not sure many celiac's have this?) with C, not D....finally got so frustrated I've been like a dog with a bone insisting there must be a blood test that wasn't run on me. After nearly 50 blood tests coming back NORMAL my IgA tissue transglutaminase antibody (tTG) led to the possible celiac diagnosis.


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Bosque Rookie
Mom, Property Manager -- currently awaiting the results of my biopsy to confirm celiac...been gluten free for 8 days. Praying that this is the correct diagnosis after years and years of docs looking at me with that ok, dear you are either nuts or depressed expression. I know that I have told at least 6 primary docs over the years that I get depressed after being sick for months on end, not sick because I'm depressed. This past year has been the worst of all...horrible bloating, achy joints, weight gain, extreme intolerance of heat (not sure many celiac's have this?) with C, not D....finally got so frustrated I've been like a dog with a bone insisting there must be a blood test that wasn't run on me. After nearly 50 blood tests coming back NORMAL my IgA tissue transglutaminase antibody (tTG) led to the possible celiac diagnosis.

We will all pray for you that the doctors will finally have the wisdome to heal you body. I was sick for 16-18 years before I was diagnosed. You are deffently taking the correct steps. Many times, doctors are just to overwhelmed themselves to spend the time to really listen to their patients needs.

emcmaster Collaborator

I'm the head of Accounting for a tech company.

:)

FarmCat Newbie
Thanks everyone for your input. Being on sabbatical with Celiac
Bosque Rookie
I'm up for the commune idea--and I'll do the farming! Seriously.

About 8 years ago I was laid off from my demanding, anxiety-inducing pharmaceutical industry job. I was not able to get back into the professional arena because of the brain fog and anxiety that I now know were the effects that gluten and soy have on me! I have now been working for 5 years at a part-time, low-stress (low-pay) position at my local library. Last year, after eliminating soy from my diet, I felt enough better to start a part-time business as an organic vegetable grower; I sell at the local farmer's market. This year, with gluten out of my diet as well, I feel well enough to expand. Fresh tomatoes, anyone?

I think that I would be more willing to purchase something from someone with Celiac's. Where is your farmers market? I'll take some of those tomatoes!

1morething Explorer

Hi all, I'm a sales rep. for a beverage packaging company. My territory is Eastern Canada so I travel alot. It's not easy going to restaurant. I have to say I get glutened alot. When glutened, I get the C with bloating & pains . Not very comfortable when I'm talking with customers. But at least I'm not worried about having to run to the bathroom. Sometimes I wish that was the case, cause then that would make me pay more attention and be more careful of what I eat :(

Rachel

nb-canada Apprentice

Interesting topic! I am a Purchasing Agent for a hospital. Off work due to recent diagnosis of Hypothyroid and Shingles and contemplating retirement. :D


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Nadia2009 Enthusiast
As many on here, I was misdiagnosed with Celiac
ranger Enthusiast

Thank God I retired way early. I don't know how people work with celiac. All I've done for almost 2 years is stay close to the bathroom! Before that, I had a small restaurant. When I closed it, I decided to retire and work in my garden. That worked for a couple of years - untill the Big "D" hit me. Last year, I got only half of the garden even planted. It was just too far from the house. I've been gluten free for 3 months now and much better, but still not right. I hope I can do the garden better this year- it's more important now more than ever. Not only from the health standpoint, but also because of the rotten economy. Because of my past restaurant experience, I sometimes think about a gluten free restaurant but then remember the 80 hour work week. No, thank you! I'll be happy if I can just work in my garden and maybe creat a little art. My question isn't so much about what you all do, but how do you do it with this illness?

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    • Colleen H
      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
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