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Cyclical Celiac


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#1 Chad Sines

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Posted 27 November 2011 - 09:40 PM

I was posting about how mine seemed to start. There are some times in the past when I had bad spells and then appeared to be back to normal for a year or more in between. Withing the last 10 years I can count maybe 3ish that I can recall. I was relatively normal in between until this last one that hit hardest last year. That is when I figured things out. Has anyone heard about anything like that before? It seems like it was building up over time but I never went gluten-free until this year. Of course as a self diagnosed person you ponder if you got it wrong, but I have been greatly improved since going gluten free. I do not doubt the diagnosis, but question if there was more to it or how it started like this.
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#2 rosetapper23

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Posted 27 November 2011 - 10:03 PM

Simply put, celiac can wax and wane throughout a person's lifetime. Even though mine was triggered when I was 11, I went through periods of feeling quite well followed by periods of poor health. Since it's an autoimmune disease, celiac can vary over time.
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#3 ravenwoodglass

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Posted 28 November 2011 - 03:15 AM

Simply put, celiac can wax and wane throughout a person's lifetime. Even though mine was triggered when I was 11, I went through periods of feeling quite well followed by periods of poor health. Since it's an autoimmune disease, celiac can vary over time.


This was my experience also until the symptoms became a steadily increasing torture when I was in my thirties. I was triggered at around 4 or 5 years when I developed severe DH but I had C since as long as my Mom could remember.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 dilettantesteph

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Posted 28 November 2011 - 03:59 AM

My symptoms got better and worse too, from when I was very small until diagnosis.
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#5 Booghead

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Posted 28 November 2011 - 11:43 AM

I would go through periods of 10 months to a year feeling fine. But this last year they have come much closer and with less breaks in between. Like having the stomach flu 5 times a year. Along with C for as long as I can remember.
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#6 lovegrov

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Posted 28 November 2011 - 11:46 AM

I think this is pretty standard for various autoimmune conditions.

richard
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#7 Chad Sines

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Posted 28 November 2011 - 12:30 PM

I am glad to hear this. I expected everyone to say they were hit hard from the start with no let up and that it may not be celiac that i am having issues with. Right now my main issues are determining what I am intolerant of right now, soy and milk so far. boo. celiac sux.
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#8 Darn210

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Posted 28 November 2011 - 02:24 PM

That's what it seemed like for my daughter. She had a really bad case of stomach flu (her trigger?) and had acid reflux with regurgitation issues afterwards. She went on a prescription strength antacid. It cleared up. It came back. Back on meds. It cleared up. It came back but quicker . . . repeated until it no longer cleared up.

Likewise, when she was healing, she was doing well, then she would have a few days of regurgitation, then she was fine for a month, then a few days of regurgitation . . . until finally she was symptom free. It was frustrating because every time that happened, I assumed she had gotten glutened somehow. In hindsight, she was just still in the process of healing.
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Experience is what you get when you didn't get what you wanted.


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#9 sandsurfgirl

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Posted 28 November 2011 - 02:38 PM

I had good periods too. I've had it my whole life but after I had my first child was when it got really bad. I started getting other things like constant sinus and bronchial infections due to the inflammation too. So there were times when my GI symptoms weren't there but I had other stuff going on.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!


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