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Your Major Indicator


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13 replies to this topic

#1 WifeMamaRN2be

 
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Posted 12 September 2011 - 12:20 PM

Hi everyone : )

What was your major indicator that you might have Celiac (if there was one)? Since I have had symptoms for so long it has been in the back of my mind for a while that I could have it, but I haven't really done anything about it until now. I have had the symptoms but my major indicator was yesterday. I had pizza on Saturday night and yesteday I woke up fine. Within a couple hours, though, I felt shaky and my muscles hurt and were weak feeling. This has continued into today, but not as severe. I have not gone gluten free yet as I wanted to get tested first. Does this sound right? Could my body have had enough and wanted to tell me in a big way?

Thanks! : )
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#2 ravenwoodglass

 
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Posted 12 September 2011 - 12:48 PM

Symptoms can change in intensity and presentation so one persons primary symptom may be different from another. My first indication was that I had 'poison ivy' for 12 months out of the year as a child, it was actually DH and about the same time I became very clumsy and off balance and developed learning problems. Doctors were clueless even after I developed daily D and eventually it got to the point where I was waking up nightly to be sick for 2 or 3 hours every night.
If you are going to get testing done do stay on gluten until the testing is finished and then no matter what the results give the diet a good strict try.
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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)

#3 pain*in*my*gut

 
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Posted 12 September 2011 - 01:24 PM

Hi everyone : )

What was your major indicator that you might have Celiac (if there was one)? Since I have had symptoms for so long it has been in the back of my mind for a while that I could have it, but I haven't really done anything about it until now. I have had the symptoms but my major indicator was yesterday. I had pizza on Saturday night and yesteday I woke up fine. Within a couple hours, though, I felt shaky and my muscles hurt and were weak feeling. This has continued into today, but not as severe. I have not gone gluten free yet as I wanted to get tested first. Does this sound right? Could my body have had enough and wanted to tell me in a big way?

Thanks! : )


I started to notice that after eating one of my favorite meals, tomato soup and mozzarella cheese stuffed bread sticks, that I got HORRIBLY bloated and gassy (more so than "normal" bloated and gassy). I didn't really connect the dots until my positive blood test, but looking back, that was a big sign that I couldn't eat gluten.
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#4 Skylark

 
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Posted 12 September 2011 - 01:27 PM

Chronic GI trouble here. I didn't know all the other stuff like canker sores and depression would also go away.
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#5 glutentheintolerant

 
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Posted 12 September 2011 - 02:07 PM

Well, it took a food store owner to tell me I needed a gluten-free diet it but I guess if I had known what I know now, these would have been my major indicators;

  • Tiredness after producing stool
  • Severe depression
  • Tiredness after eating sugary foods
  • Easily agitated on an empty stomach

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#6 Twinklestars

 
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Posted 12 September 2011 - 02:40 PM

Looking back, my major indicators something wasn't right was recurrent mouth ulcers (I'd get a new one every couple of weeks), extremely painful gas pains (I would catch myself not drawing a breath because it was so painful) and the bloating that goes along with it. But hindsight is also 20/20 and I think I can also attribute my intense growing pains in my legs and recurrent nightmares as a child to Celiac (or at least gluten intolerance).
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#7 alexsami

 
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Posted 13 September 2011 - 05:59 AM

diarrhea and horrible stools and gas :(
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#8 love2travel

 
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Posted 13 September 2011 - 02:00 PM

Nothing. I requested bloodwork as my sister was diagnosed with gluten intolerance. Boy, was I SHOCKED when I was told I have celiac! I'd always been the healthiest one in our family. However, in retrospect I do see a few things that are related such as arthritis, fibromyalgia (which I did not know I had until April) and all my miscarriages. :( And now I get dreadfully ill from dairy. :o

But no, I had zero indicators at the time.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#9 beebs

 
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Posted 13 September 2011 - 02:17 PM

Now that I look back I probably had symptoms my whole life, awful growing pains and a 'weak stomach' as a child and then when I was older around 21 I started getting this thing when I ate 'stodgy food' - which I know realise was wheat, where I would get this mucous thing happening so bad that I couldn't swallow and then all this mucous would just come pouring out of my mouth - so gross....diagnosed as allergy. I developed severe GERD and was on medication for it. And then the year before I went gluten free I suddenly started getting episodes of transient intersussecption (where the bowel telescopes on itself) that was terrifying and each time I thought I was going to dieI had it 4 times and the last time was when I had gone gluten free for 6 weeks and then ate heaps of gluten at a restaurant. I ended up so ill I ended up in hospital. And even though my mother has celiac it still never occurred to me thats what it could be until that last episode. Hindsight is great!
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HLA DQ8, gluten-free since January 2011

#10 pricklypear1971

 
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Posted 13 September 2011 - 02:25 PM

DH.

I had "lingering" thyroid symptoms - which turned out to be gluten- bit no one would have recognized it.

No one recognized the DH, either. Just figured that was the obvious choice when gluten-free helped.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#11 WifeMamaRN2be

 
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Posted 13 September 2011 - 02:37 PM

Nothing. I requested bloodwork as my sister was diagnosed with gluten intolerance. Boy, was I SHOCKED when I was told I have celiac! I'd always been the healthiest one in our family. However, in retrospect I do see a few things that are related such as arthritis, fibromyalgia (which I did not know I had until April) and all my miscarriages. :( And now I get dreadfully ill from dairy. :o

But no, I had zero indicators at the time.


Do you mind if I ask how your fibro was DX? And I hope you are feeling better! : )
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#12 love2travel

 
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Posted 13 September 2011 - 03:32 PM

Do you mind if I ask how your fibro was DX? And I hope you are feeling better! : )

Not at all! I have had severe chronic back (and a host of other body parts) pain (see my signature). So, I was finally referred to a chronic pain management specialist (18-month waiting list here in Canada) who did a bunch of testing, poking, prodding and determined that I definitely have FMS. When a total of 11/18 pressure points, when pressed, cause agonizing pain, a diagnosis is given (with other tests). Well, all my 18/18 points were excruciating. Then I told him I also have celiac disease. At that point he was even more adamant than before that there was no doubt I had FMS.

After being strictly gluten-free now for over six months there definitely has been ZERO reprieve from my FMS pain. In fact, it may be somewhat worse. I am hoping that as time goes on the FMS will dramatically improve - it must as I am in debilitating pain each and every day. Non stop. Once I was so desperate the ER doc gave me shots of something or the other just to enable me to sleep 24 hours so I could escape the dreadful pain. Of course with FMS comes nearly no sleep - it can be nearly impossible as it is so darned uncomfortable. So, when you do not sleep your muscles are not replenished and so goes the cycle. :(

I find the FMS FAR, FAR worse to deal with than celiac just because it is always there. At least with celiac you can forget about it for periods of time. But I will never stop hoping and praying that I will get better. :) I just MUST! :D
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#13 bartfull

 
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Posted 13 September 2011 - 04:20 PM

Luv, I am so sorry to hear that you are in constant pain! I hope and pray it gets better for you soon! Kind of makes me feel like a crybaby for complaining about psoriasis and insomnia!
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#14 love2travel

 
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Posted 13 September 2011 - 04:37 PM

Luv, I am so sorry to hear that you are in constant pain! I hope and pray it gets better for you soon! Kind of makes me feel like a crybaby for complaining about psoriasis and insomnia!

Oh, thank you. It is really hard because it affects every moment of every day and every aspect of my life. I really took health for granted a few years ago. I feel double my age. :( It hurts just to put deoderant on - and just wearing clothes hurts but I sort of have no choice with that. ;)

I understand insomnia - it can make life pretty rough, too. When I hear of others suffering from insomnia my heart really goes out to them. There are nights I literally do not fall asleep and I pay severely for it. On average I sleep well once every 7-10 nights so usually I am running on very little. Did not fall asleep during sleep study, either.

We must continue to hang in there, though! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.




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