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A_worried_girl

Could This Have Something To Do With Gluten?

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Hello,
First of all, I want to point out that I'm an 18-year-old girl and that my main language isn't English.


I am (and my family are) a little concerned that I might have ploblems with eating gluten - so I thought this forum might be able to help me sorting out some things.


I'll just go straight to the facts:

For a very long time, I've had nausea everyday. It has usually come some time after I ate something - something that might as well have had gluten in it - or when I had to go to sleep at night. I've lost a lot of sleep because of this.
Some nights I have also experienced that my legs shake (not from cold) without me being able to stop them.

Because of this, some of my friends have suggested to me that it might have something to do with gluten.

I searched the internet and found those symptoms that I match:
The nausea
Burping a lot in order to make my stomach feel better
Being cold all the time
Feeling dizzy when I stand up too fast
Anxiety


I have stopped eating gluten saturday the 25th of January 2014.
Since then I feel I have to burp a lot more... My stomach is also making a lot of sounds and is generally just feeling very unstable... Or like as if something is happening in there - like as if it has started working a lot with what I eat...
- I searched the internet about this having a connection to going glutenfree and I found some websites where they mentioned this as things happening after stopping eating gluten.
Today (the 28th), I've also felt some pain in my stomach - not terrible but still unpleasant.
I have had a great improvement with my nausea that comes after I eat - It seems roughly to have gone away, and when I feel it it is at least less worse than before I started avoiding gluten - but at night it's still hard to cope with.



My question is:
Does this in any way sound like it could have something to do with gluten?
At first, I couldn't find anything on the internet that matched my symptoms and the ones that I have found later and that does match my symptoms isn't really from official websites - therefore, it would be great if I could have them approved in some way.

I just feel so lost in all of this.

 

Thank you so much in advance!

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Welcome to the board.

 

Yes, it could be due to a gluten intolerance. Because your symptoms changed when you stopped eating gluten, that also points towards gluten being a problem.

 

People who have problem with gluten are either celiacs or they have (NCGI) non-celiac gluten intolerance, which is much more common and does not damage the intestinal villi. There are no widely accepted blood tests for diagnosing NCGI; if you have a positive response to the gluten-free diet after a few months, then it indicates NCGI. Celiac disease will have the same symptoms and positive response to the gluten-free diet, but there are blood tests available to test for it as long as the patient is still consuming gluten. Those tests are:

  • tTG IgA and tTG IgG (tissue transglutiminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial)
  • total serum IgA - a control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - this is an older and less reliable test but some think it can show NCGI as well a celiac disease.

For all tests to be accurate, the patient should be eating gluten (about 2 pieces of bread per day) in the two months prior to blood tests being done. Do not go gluten free if you want to be tested.

 

The endoscopic biopsy requires only 2-4 weeks of glute for an accurate test.

 

Your symptoms also match hypothyroidism (feeling cold and upset stomach). Look at Hashimoto's and see if that fits you too. The tests for that are TSH (should be near a 1), free T4 and free T3 (should be in the 50-75%range of your lab's normal reference range), and TPO Ab.

 

Getting dizzy when you stand is postural hypotension; it means your blood pressure drops when you stand up. That can have something to do with your adrenals, or dehydration. Celiacs often have low blood pressure too.

 

Best wishes. I hope you find answers and feel well soon.

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Thank you so much for your quick answer!

And also that it is a thorough one.

 

This has made me a lot more confident that what I have started doing is a good idea.

 

As with the testing: I really don't care that much about that right now... Right now I am going glutenfree all the way since I don't see any reason in getting a test done if this works for me and makes me feel better.

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If you think you might want to be tested in the future, you will need to do the gluten challenge for about 2 months for test accuracy. If instead you get tested immediately, you won't have to add gluten back into your life for two months... Much less painful. Eat gluten for a few more days and then test if you think a test result will be helpful in the future.

 

Please consider that many celiacs  find having a diagnosis helpful in staying gluten-free for life. That is what will be required for celiac disease or NCGI. No cheats ever or your health will suffer. Many of us, myself included, found the diagnosis helpful to keep our will power strong.

 

Best wishes in whatever you decide to do.  :)

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yes, there are many more ways to being gluten free than just not eating gluten.  if your problem is gluten, you have to get it completely out of your system.  that means separate cookware.  eating out is a gamble and many restaurants are ignorant about the gluten free diet and may give you gluten by mistake.  you have to go over the ingredients on many items, for example:  lip gloss, shampoos, soaps, etc, anything that you might get into your mouth.  you will want to read the newbie 101 thread in the coping section of this forum.  good luck  :)  it is a hard task and one i'm sure i wouldn't want to do if i didn't absolutely have to......... 

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You may also want to consider your family background and health history in considering if you are at risk for being celiac.  It is genetic, so you may have other people in your family with Gastro health issues.  Also, other autoimmune diseases put you further at risk for developing the disease. Italian and Irish have high rates of celiac in their population and apparently North Africa (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264942/).  If you have indicators either by heritage or family/personal medical history, you may want to consider getting tested to document it for your family.

 

I'm not sure where you are writing from, but your English is quite good!  Yeah you!!

 

I hope you continue to improve off the gluten.  It actually took me a few weeks to notice anything different, so the fact that you saw immediate results is a good thing.

 

Shellie

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I have talked with my parents about the testing and getting a documentation for this - and we all agree that it isn't important to us.

It's enough that I get better after stopping eating gluten.

 

anti-soprano:

My mother has fought a lot with an upset stomach for many years and she is actually also going to join me in my glutenfree eating to see if she also might get better from it. So that might count as a family member's medical history.

- Thank you for the compliment saying that my English is quite good - I'm very happy to hear that :)!

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