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CherylS

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CherylS Apprentice
CherylS
Posted

Hello,

I'm a pretty tough lady, I'm a nurse so I ignore a lot of symptoms and keep going about my day.  I have been having nausea and a weird feeling in my mouth every time I eat for at least 6 months.  I noticed my lips feeling almost numb after eating too.  Sometimes my inner ears itch after I eat, I never put this all together.  I have a hiatal hernia, I blamed my symptoms on that, it usually causes heartburn, I just figured it was my body being weird.

A couple months ago I was turned away from donating blood because my hemoglobin was too low, it was 9.4 and the blood bank nurse suggested I go to my doctor because that was really low and I looked pale.  I'd been having heart palpitations as well, so I decided to go see my doctor.  I went and after blood work I was diagnosed with iron deficiency anemia.  I started eating more iron rich foods, taking a supplement, etc.  I'd been tired too, I  blamed the anemia.

I was really sick at work the other day after eating breakfast, my coworker said, I bet you are lactose or gluten intolerant.  I did nothing with this until today, I figured it was just her grasping at straws.

I looked up celiac disease and saw some of the common symptoms and conditions that could be related and my jaw dropped.  At the top of the list was autoimmune hepatitis, I was diagnosed with that 15 years ago.  I have so many of the symptoms, I thought my numb tingling hands were from typing on my phone, I thought the joint pain was my autoimmune hepatitis flaring up.  I thought the gross bowel movements and flatulence were from the fruits, vegetables, whole grains I've switched to.

I'm going to call my doctor tomorrow to be seen so we can start the process of being tested.

I can't imagine the joy at feeling normal again.  I'm actually gaining weight, always hungry, but too tired to exercise.  I also eat sometimes in the hope of sopping up the nausea, thinking there is acid in my stomach.

Even if my tests come back negative, I'm going to try to go gluten free to see if it helps.

Sorry for the rambling, I'm just excited at the potential for answers. 

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cyclinglady Grand Master
cyclinglady
Posted

Glad that you found us!  Here is the complete celiac blood panel.  

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
Keep consuming gluten until all testing is complete.
 
(Source: NVSMOM -- ?)
 

I would insist on the full panel since you already have another autoimmune disorder.  Why?  I guess I would like everyone to get the complete panel to insure that no one is missed!  Besides, I tested weird and I am glad that my GI ordered th complete panel.  My main symptom was Anemia and I have Hashimoto's Thyroiditis.  

Welcome me to the forum!  

 

 

squirmingitch Veteran
squirmingitch
Posted

And stand over the doctors shoulder & make sure he/she orders the complete panel!!! SO many don't. And believe it or not, the majority of docs DO NOT know what the full panel is OR what the symptoms of celiac disease are. They think it's just GI symptoms & you have to be ultra skinny. You are a nurse & you didn't know - docs don't either. Good for your coworker recognizing you might be suffering from celiac. Give her a gold star!

 

And since this can never be emphasized enough.......

DO NOT STOP EATING GLUTEN UNTILL ALL TESTING IS COMPLETE & THAT INCLUDES AN ENDOSCOPY.

And even if the doc tells you you can stop eating gluten before testing is complete --- don't listen.

CherylS Apprentice
CherylS
Posted
  • Author

Thank you,

Squirm, I didn't eat gluten today just because I wanted to see if there was a difference.  It feels so good not to walk around nauseous with my mouth watering all day, I will eat gluten with dinner tonight.

cyclinglady Grand Master
cyclinglady
Posted

Glad you saw results so soon, but most of us take weeks, months to a few years to resolve all symptoms.  Keep eating gluten as you really want to get a definitive answer to your health issues.  You don't have to go crazy.  A slice of bread or two  (or equivalent per day) is recommended by the University of Chicago.   They have a great celiac website and are one of the leading research groups in the US. 

nvsmom Community Regular
nvsmom
Posted

:) Agreed. Keep eating gluten until those tests are done.  And let us know how the tests go.  Good luck!

squirmingitch Veteran
squirmingitch
Posted

Some people find it helpful to eat the gluten before bed so that the worst effects occur overnight & they might not be so bad off at work the next day. It works for some & not for others. Worth a try though.

When you get your results then come back here & read the Newbie 101 in the Coping section so you can learn how to keep yourself safe. There is a steep learning curve to the diet & it's scary at first & there is a mourning period but once you get the rules down it will become second nature.

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CherylS Apprentice
CherylS
Posted
  • Author

I was just coming back to say that I think I have ulcers or something, because my nausea is still there, but my mouth feels better.  I'm eating bread at dinner every day until my appointment, but trying to cut the gluten containing products out of my other meals.  I wonder if I have a wheat allergy, because I get the itchy inner ears and lips and mouth symptoms when I eat breads or pasta.  I'm going to get the testing done no matter what, but I'm starting to lean away from celiac disease. 

My appointment is October 21, I'm going to try not to think about anything too much until then.  

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