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Just Diagnosed


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8 replies to this topic

#1 texmatt21

 
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Posted 25 October 2012 - 02:09 AM

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Just got diagnosed with celiac. In my doctor's words the results were "alarmingly high". I'd always wondered why my head was in a constant fog. I tried to go to a few doctors for it, even had an MRI and CT scan, of course they had no clue what it was and not once was celiac mentioned as a possible cause.

How is this not a bigger deal?! Why Why isn't food required to be labeled gluten free? I was the one who had to ask to be tested and my doctor acted like I was a nut when I did.

In case you can't see the pic here's the test results.

IgG 14.0 Flag range 0-6.1
IgA 19.0 Flag range 0-10.3
IgA antibody Positive
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#2 1desperateladysaved

 
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Posted 25 October 2012 - 05:00 AM

I don't know why. Here's some little flowers ***** I would want you to get well soon. You will figure out the diet in time. Reading other posts here will help you understand more. I don't think any of us understand why doctors don't always know what is going on. But now you can do something to lift your own health. Maybe the foggy life will go away.

I hope so!
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#3 shadowicewolf

 
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Posted 25 October 2012 - 05:04 AM

Most companies now do label if it has wheat in it (kraft and urvieler (sp fail)).

Doctors like to look for horses and not zebras, thats why. Its just soooo much easier for them <_<

At any rate, just read labels. Thats all you can really do.
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#4 psawyer

 
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Posted 25 October 2012 - 05:35 AM

In the US, wheat must be clearly disclosed either in the ingredient list, or in a "Contains" statement. Rye and oats don't hide.

The single word ingredient, "starch," means cord starch in the US and Canada.

Here's a list of companies that have a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc."
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#5 Terry Ambrose

 
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Posted 25 October 2012 - 05:52 AM

When I was diagnosed 10 years ago, most doctors had no clue as to what celiac disease was. Fortunately, I had a very tenacious doctor who wouldn't let go until she figured out what the problem was. Dealing with it today has become far easier than it was back in those days, but the diagnosis doesn't appear to be any easier to come by. Right now, you need to focus on getting well and learning what's safe and what's not. Begin by reading every single label and, when in doubt, call on your cell phone from the grocery story or look up the product online. It's incredibly time consuming at first, but it does get better. And many foods are now labeled as gluten free. They'll cost more, but they're safe, and that's what's most important for you now. Best of luck,
Terry
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Terry Ambrose

#6 nvsmom

 
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Posted 25 October 2012 - 05:00 PM

Sorry to hear of your diagnosis. :( But I'm happy that you figured it out and have the test results to back it up... With those numbers, there is no question that you have it. I hope you have a quick recovery and are able to see improvements within a week or so. Good luck to you, but I'm sure you'll do fine. The diet takes a bit of getting used to but it's not that hard once you get into the swing of things.
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Nicole Posted Image

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#7 texmatt21

 
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Posted 25 October 2012 - 08:22 PM

Thank you everyone for all of your well wishes! As bad as the diagnosis is, I've started to feel incredible now that I've eliminated gluten from my diet! In school I was always the last one to complete any test even though I knew all of the answers. Most of my teachers wrote me off as slow or lazy. Even having a simple conversation with my friends was next to impossible. At least now I know why now!
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#8 Megan@Top6

 
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Posted 26 October 2012 - 07:19 AM

Hi there.
Hang in there, you're going to be able to handle the gluten free diet and trust me, you'll feel so much better soon. I too had mental fog and my blood work was in the 90s when I was diagnosed. I would reccommend trying to to stick with certified gluten products at first (they have a specific label) so you know you're not getting cross containinmation. I like pop chips, stoneyfield yogurt, jovial pasta etc, and trust them. Also, try to eat naturally gluten-free foods like vegetables, rice, meat, etc. Best of luck and would be happy to help you along the way.
Megan
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-Megan
Diagonosed with Celiac disease 9/2008
Anaphylaxis to peanuts, tree nuts, fish, shellfish and soy for 25+ years

Driven to help others with Celiac and severe food allergies.

#9 GottaSki

 
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Posted 26 October 2012 - 07:39 AM

How is this not a bigger deal?! Why Why isn't food required to be labeled gluten free? I was the one who had to ask to be tested and my doctor acted like I was a nut when I did.

Welcome Matt!

Both very good questions - awareness has improved a great deal in the three and a half years since I was diagnosed - things are moving in the right direction - although it often seems the knowledge needed throughout the medical community is being transported on the back of one lonely tortoise!

Great detective work on your part - perhaps I shouldn't, but I do take great pleasure in hearing stories of doctor's being educated by their patients - still isn't right and certainly not fair.

Stick to whole foods - think the perimeter of the grocery store - fresh produce, meat, dairy (if it doesn't bother you) for the first few months. It is best to limit processed gluten-free foods to treats as you heal.

The transition is tough, but it does get easier with time.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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