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"probable Coeliac Disease"


Jenni121

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Jenni121 Rookie

Hi all,

I think my life is about to change dramatically in the next few days.

A couple of weeks ago I had a blood test to exclude coeliac disease, and the results came back overwhelmingly positive.

I had my endoscopy yesterday, and the report says "probable coeliac disease". I am awaiting the results of the biopsy which should be back in a few days.

Seems there's a good chance I have this.

The only symptom I had that led me to get tested is anaemia. But after reading a bit about "brain fog", I realised I have been suffering from this too. I just thought I was losing the plot. I'm only 26, so that's a scary thought. On the one hand I'm hoping its not celiac disease, just because the change is so dramatic and lifelong. But on the other hand, it would explain (and hopefully fix) alot.

It all feels a bit surreal right now.

Is living gluten free really as difficult as it sounds?


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pricklypear1971 Community Regular

That's a loaded question.

I think particular lifestyles will not lend themselveS easily to a gluten-free diet - traveling for work (constant restaurant meals) is an example.

If you are used to eating a high gluten, processed food diet, the transition may be more difficult.

If you have other food issues, that can increase the difficulty..,

So technically, no, gluten-free isn't that difficult (it's easy at home) but I think learning the ropes can be trying. Managing multiple food issues is very difficult, I think.

In the end, though, feeling better is worth it. So, welcome and keep on truckin'! Read through the forums and ask lots of questions.

eatmeat4good Enthusiast

It would be great if your symptoms resolve. I "missed the plot" for 47 years. I feels really good to be able to get the plot now.

Being gluten free is a bit "messy" in the beginning as you will have to clean out the kitchen and bathroom of gluten, and I invariably got sick on those days. But when you figure it out and you start to enjoy cooking and eating, it isn't really hard. Just be prepared for a lot of surprises as you find where gluten hides.

It has been wonderful not to have brain fog and to watch my body heal. I hope you have the same wonderful experience. It makes it alright when you have to avoid restaurants and other people's cooking. I just remember what it was like to be sick all those years and suddenly I'm very grateful for gluten free food and the gluten free lifestyle.

If you are postive and you have to go gluten free, just remind yourself that you are saving yourself from years of mysterious illness with no solution, and you might have avoided the development auto-immune diseases that plague some of us who found out late in life.

Read, read, read. I read every label for the last year and I only glutened myself the one time I didn't read the label. Ugh. But I learned...and you will too. It can be kind of fun to know that the solution is so simple...just avoid gluten and you will be fine. Not many people have that kind of control over their disease. I feel happy about that.

Jenni121 Rookie

Thanks so much for the replies.

I just got back from the Dr. Results are in... I've got celiac disease.

Its very daunting to think there are things I'm never going to eat again, for the rest of my life. That's a long time!

But you're both right, it will be worth it.

Over I hop to the "post diagnosis" forum for some more advice and words of wisdom :)

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    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
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