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So Confused


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31 replies to this topic

#16 GlutenFreeAustinite

 
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Posted 30 April 2012 - 04:06 PM

Yikes, those neuro symptoms sound super scary! o.O

I've been weirded out all day because my symptoms seem to fluctuate. One minute I have a really bad stomachache, an hour later, nothing, just a grumbly stomach (though not due to hunger) and what I think is acid reflux. I've had really intense brain fog and inability to concentrate all afternoon. I feel like I'm getting a migraine, though again, I have it one minute and it's gone the next. I'm also still constipated (awkward) and not sure what to do about that, any suggestions?
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#17 IrishHeart

 
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Posted 30 April 2012 - 04:20 PM

I would take probiotics for the bowel issues that are starting to erupt.

I also saw that you said on another thread that you are starting to have irritability.

Hon, I fear you are going to keep getting worse as you continue to do this challenge.

Can the doctor just DX you from symptoms returning ON gluten?
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#18 tom

 
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Posted 01 May 2012 - 02:27 AM

The last I heard it was 3 months.

Let me verify that with the Mod who posted that info. BRB!

.............

okay, some Celiac specialists say 2 months, but the 3 months gluten challenge is best for the blood work.
(The University of Chicago Celiac Disease Center)
...

Haven't people been dx'd w/ 6 wks? Lotta Drs use 4 wks or 6 wks, apparently, by what ppl have have posted here. They can't be diagnosing none of their gluten challenge patients w/ celiac, can they?

Certainly from a statistical standpoint, 3 months picks up more of the tail of a distribution but at some point picking up just one more percent might mean another x # of weeks for everyone.
I'm not sure it even works out much better for that one patient in a hundred making the switch to a positive test. We see our share of ppl going gluten-free w/out dx - maybe he or she was going gluten-free either way.

I can understand that researchers prefer 3 months. Some might like longer.

Wish there was more research on this. Maybe some people neg at 6 wks would do another 6 wks.

Hope it's not too bad for you challengers.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#19 GlutenFreeAustinite

 
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Posted 01 May 2012 - 07:03 AM

@Irish Heart, my doctor won't diagnose based on symptoms, sadly, though he does agree that it seems like I shouldn't be eating it. And the school I'm going to requires an official medical diagnosis before they can make accommodations.

Not to mention, I'm only 18. I want to know if I have celiac disease, which has repercussions for fertility, and a host of other things should I continue to mildly gluten myself (through shared fryers, wheat in the house) or gluten intolerance. It doesn't make a huge difference in the way I will continue to live, but knowing if I have an autoimmune disorder would be beneficial. My grandmother had a TON of medical issues that I suspect were related to celiac, and I'd like to know now instead of scrambling when I'm 70 to find out what's wrong with me.
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#20 IrishHeart

 
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Posted 01 May 2012 - 07:23 AM

Then, you may have to put up with the symptoms if your doc is being so rigid. Sorry. He could still write something stating your need to be gluten-free.

If I were you, I'd stay off gluten regardless of the test results.
You already know you are intolerant of it.

I have had dozens of health ramifications from Un-DXed celiac and my whole life would have been drastically different.
I may have had children, for starters.

You do not need to convince me of your desire to get a firm DX.
I fought for one for 3 years. I'm with you on this!

I just feel bad you are suffering for it. :(
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 Mnicole1981

 
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Posted 01 May 2012 - 01:04 PM

Then, you may have to put up with the symptoms if your doc is being so rigid. Sorry. He could still write something stating your need to be gluten-free.

If I were you, I'd stay off gluten regardless of the test results.
You already know you are intolerant of it.

I have had dozens of health ramifications from Un-DXed celiac and my whole life would have been drastically different.
I may have had children, for starters.

You do not need to convince me of your desire to get a firm DX.
I fought for one for 3 years. I'm with you on this!

I just feel bad you are suffering for it. :(


Do you mind if I ask what other health issues you had to deal with? I went to another doctor today who thought it best we check my thyroid and hormones because of my night sweats and weight loss. I don't have any kids either.
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#22 IrishHeart

 
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Posted 01 May 2012 - 01:15 PM

Do you mind if I ask what other health issues you had to deal with? I went to another doctor today who thought it best we check my thyroid and hormones because of my night sweats and weight loss. I don't have any kids either.



My story has been told many times on the forum and it is very complicated, but suffice to say, I had DOZENS of symptoms. Skin, joints, muscles, nerves, my reproductive health, endocrine system-- EVERYTHING was affected.

Night sweats and a drastic weight loss were among them.

Have your thyroid checked as it is often associated with celiac.

Have you seen this list? Take a look at it and see if your symptoms fit.

http://glutenfreewor.../symptom-guide/
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#23 Mnicole1981

 
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Posted 01 May 2012 - 02:22 PM

Just about all of them fit...
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#24 IrishHeart

 
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Posted 01 May 2012 - 03:28 PM

Just about all of them fit...



all 300 ??? yikes.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#25 Mnicole1981

 
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Posted 01 May 2012 - 03:52 PM

all 300 ??? yikes.


Well, not literally. Just more of them than I realized, especially looking back through the years.
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#26 IrishHeart

 
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Posted 01 May 2012 - 03:58 PM

Well, not literally. Just more of them than I realized, especially looking back through the years.



Make a list for your doctor.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 Mnicole1981

 
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Posted 01 May 2012 - 05:20 PM

Make a list for your doctor.


Would the night sweats have anything to do with perimenopause?
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#28 IrishHeart

 
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Posted 02 May 2012 - 04:33 AM

Would the night sweats have anything to do with perimenopause?



Mine sure did!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#29 ravenwoodglass

 
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Posted 02 May 2012 - 04:44 AM

Would the night sweats have anything to do with perimenopause?

Yea they could be. However if you seem to be starting to go through menopause a bit early that may be stopped in it's tracks gluten free. Celiac can cause issues with infertility and early menapause that can resolve gluten free if the celiac is caught early enough.
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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)

#30 Mnicole1981

 
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Posted 02 May 2012 - 05:13 AM

Mine sure did!

Do you mind me asking how old you were when you were diagnosed? I am 31...
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