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14 replies to this topic

#1 CommaHolly

 
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Posted 03 February 2014 - 08:20 PM

Hello! My name is Holly, and I'm 48 years old.

 

My story is long and boring,,,,,,and I'm not yet even sure I belong here,,,,,,

 

let me suffice it to say that I'm persuing being tested for Celiac (my doctor's appt is thursday) because for 20 years, I've had symptoms that until recently, I didn't even have a CLUE could be connected,,,,,,,

 

They include in somewhat chronological order :

 

constipation

diarrhea

migraines/bad headaches

late periods

unbearable cramping and pain at period time and just before

hip pain

lower back pain

joint pain (knees, elbows, shoulders and hips)

terrible memory issues (scary ones,,,,,like not remembering how to get home from a local store I go to almost daily)

word dropping

tingling fingers and toes

a numb foot and outer right leg (for the past 3 years that has yet to have sensation return)

muscle cramping (sometimes severe)

 

I've been misdiagnosed with endometriosis (for which I later had surgery to diagnose,,,I did not have endo.) and fibromyalgia (they dumped this on me after being tested for everything else they could think of) and IBS.

 

Or possibly I DO have some of those things,,,,,,,,,,who knows at this point????

 

I'm just sick of not knowing, sick of being thought of as crazy, sick of whatever I'm diagnosed with not "quite" fitting,,,,,,,

 

I've been tested for MS, AS, lupus, RA, and ankylosing spondylitis,,,,,,,,,,and probably a bunch of other things,,,,I have none of them.

 

I've had blood panels (all appear to be normal), X-rays and MRI's,,,,,,also normal. I have some minor bulging of discs in my lower back, but nothing that should be causing the pain I'm feeling,,,,,,so says the neurologist,,,,,,,

 

they can't explain the numb right leg and foot,,,,,nor the very slow reflex responses in that leg,,,,,,,,,nor what appears to be permanent nerve damage in the two small toes in that foot. I'm actually convinced my neurologist thought I was a nutcase until that test,,,,,,you can't fake that stuff.

 

I'd never have even CONSIDERED Celiac if it weren't for my daughter,,,,,,she's 28 and has begun having the same problems I had at her age,,,,,hip pain, to be exact.

 

She has no health insurance, but she went gluten free and has had tremendous success lowering her pain levels,,,,,,,,,,it got me to thinking,,,,,

 

frankly, I'd rather not have it,,,,,,,I love gluten,,,,,,I'm addicted to anything with gluten in it,,,,bread, cake, cookies,,,,,,,

 

I might cry if I have celiac. I'm not kidding.

 

Most people with celiac are skinny, though,,,,,I am definitely NOT skinny, so I'm sort of praying that's a sign I don't have it,,,,,,

 

Anyway, I just wanted to say HI! and let you all know I'm reading,,,,,,,and kind of scared, to be honest,,,,,,and let you all know I'd really rather not be part of this group,,,,,,,,I'm sure you're all very nice and all :)  but I'd really rather NOT have celiac. I totally suck at following diets.

 

Have a wonderful day :)

 


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#2 cyclinglady

 
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Posted 03 February 2014 - 10:20 PM

Welcome!

If you decide to test for celiac disease, do not stop eating gluten until all testing is complete. Testing won't just help you, but your daughter as well as celiac disease runs in families.

Both my husband and I are gluten free. The diet is not bad and I bake gluten-free goodies and no one can tell the difference! The best thing? Feeling great! Better to find it before you cause long term damage. If your tests do not support a celiac disease diagnosis, try the gluten-free diet for 6 to 9 months. Many folks find relief.
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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#3 LauraTX

 
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Posted 03 February 2014 - 11:49 PM

Welcome!  Let us know how your doctor appointment goes.  Like cyclinglady said, keep eating gluten until testing is done, and don't not consider a gluten-free diet if the results are negative.  If you do have to go gluten-free, there is definitely an adjustment period, but the worse off you are before going gluten-free the more instant reward you get when you start to feel better.  Just have to learn to substitute things when you cook and it eventually becomes second nature :)


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I am my husband's "Silly Yak Girl" :)
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

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#4 Lee uk

 
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Posted 04 February 2014 - 12:40 AM

Welcome

I only went to my GP yesterday and am having the blood test tomorrow, I am still eating gluten until they have done the tests, I really don't wona eat it now but I have eat it for 43 years so a few more weeks I will have to just Cary on. the doctors appointment goes well


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#5 CommaHolly

 
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Posted 04 February 2014 - 01:42 AM

thanks for the welcome. My daughter is having such good luck with gluten free, I may just have to try it even if the test is negative.

 

I'm sort of eating a ton of gluten now until the test is over, but thanks for the reminder :)


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#6 NoGlutenCooties

 
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Posted 04 February 2014 - 05:54 AM

Welcome to the forum, Holly -

 

I know what you mean about not really wanting to be "one of us", but being gluten-free isn't bad at all and as others have mentioned it can make you feel so much better that the trade-off is more than worth it.  Either way, please stop back and let us know how the tests went. 

If it is Celiac, my suggestion is to focus on the positive - that you found it before it gave you something really serious, like severe thyroid problems or cancer.  And all you have to do is not eat gluten.  No medicine, no side-effects, no surgery, no long-term medical treatments, no medical bills, etc.  Just a diet adjustment.  It the grand scheme of things, it's actually one of the better diseases to have if you have to have one.

 

But it's still ok to cry - we're here for you!

 

Good luck!


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#7 bartfull

 
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Posted 04 February 2014 - 10:45 AM

What they said! :lol:

 

But I just wanted to add that even though some doctors still claim that most folks with celiac are thin, that is not true. There are quite a few people with celiac who are overweight. (I speculate that becuase we aren't getting the nutrients from our food that we overcompensate by overeating. Sugar will make even a celiac gain weight.)

 

Here are the tests you should ask for:

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

 

Make sure you get copies of the test results and the ranges, then post them here so we can help you interpret them.


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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!

 


#8 1desperateladysaved

 
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Posted 04 February 2014 - 10:50 AM

Welcome!

 

I did some crying at first, but now I am happy because I am BETTER.  I hope all the same for you (but for the crying).  My story is similar in many respect.  I carried the celiac weight at least 30 years before I couldn't carry on any longer.

 

D


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#9 CommaHolly

 
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Posted 04 February 2014 - 11:25 AM

thank you all,,,,,,,,somehow, it doesn't seem so bad now :) My sister has juvenile diabetes,,,,,,,,,that's bad. This,,,,,,it doesn't feel so bad anymore.


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#10 GottaSki

 
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Posted 04 February 2014 - 01:23 PM

Welcome Holly!

 

It's okay to cry....it is extremely frustrating to be continually dismissed by doctors for normal results.  Except for anemia and low vitamin D I never had a positive blood test until I was finally tested for Celiac.

 

Not everyone with celiac is underweight.....I was overweight while eating very well with significant exercise my entire life, but never once had a doctor believe me about my diet and exercise level.  Many of us are of average or overweight with C rather than skinny with D!

 

Hang in there and do let us know the results of your blood work.  Do not remove gluten until you and your docs decide if an endoscopy is the next best s step for you.  After you are sure testing is complete...remove ALL gluten for at least six months....you may find improvement quickly, but it can take time given your symptoms...I know because I could have written your post myself 5 years ago.

 

Good luck to you and your daughter :)


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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 :)


#11 frieze

 
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Posted 04 February 2014 - 02:21 PM

your sister should be tested also, it is not uncommon to find Type I diabetes with celiac.


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#12 anand

 
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Posted 05 February 2014 - 06:01 AM

Hi,
Have u checked ur b12 and vitamin d... Pl. ask them to do it with celiac panel , if not already done....
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#13 NoGlutenCooties

 
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Posted 05 February 2014 - 08:41 AM

Just wanted to add that you might want to consider a bone density test.  Osteopenia and early osteoporosis are common in Celiacs due to the poor absorption of nutrients.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#14 CommaHolly

 
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Posted 05 February 2014 - 01:44 PM

Just wanted to add that you might want to consider a bone density test.  Osteopenia and early osteoporosis are common in Celiacs due to the poor absorption of nutrients.

my mother has osteopenia,,,,,,,,,and she's had major indigestion problems her entire life,,,,,hmmmmm.


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#15 CommaHolly

 
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Posted 05 February 2014 - 01:45 PM

Hi,
Have u checked ur b12 and vitamin d... Pl. ask them to do it with celiac panel , if not already done....

not that I know of,,,,,,,,I'll talk to the doctor about it tomorrow! thanks!


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