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

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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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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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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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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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  • Posts

    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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