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Zebra007

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Zebra007 Contributor
Zebra007
Posted
Hi, I am new to the site and I'm just looking for a bit of advice and support..
 
I have Ulcerative Colitis, GERD and I am lactose intolerant..recently I decided to cut out Gluten simply because my stomach seemed quite bloated and some days I would have a lot of gas, also my eyes seemed to be very itchy, especially first thing in the morning, but I have put weight on so I am unsure of whether I have just got a bigger stomach due to putting on weight!
 
I also have everything you can possibly have in the Lichen Planus family, which is another auto immune disorder.
 
Its only been just over a week and I am realizing how focused, restrictive and disciplined you need to be when following a Gluten Free diet..I am wondering if I have been too hasty, wouldn't it have been better to have had a blood test to find out if I am Gluten Intolerant, rather than put myself through this...
 
I have recently had to cut out using my e-cig, so I am feeling pretty miserable.
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GF Lover Rising Star
GF Lover
Posted

Hi Zebra.

 

You really want to get tested for Celiac before you put yourself through this.  Understand, there is no test for Gluten Intolerance.  Not only do you need to change your diet to be gluten-free but you have to make changes in your Kitchen, have procedures in place to dine out, carry food with you all the time and if you live with others there needs to be procedures for that.  It is a complete commitment or you won't get any benefit.  

 

Itchy eyes would probably be due to allergies and not necessarily gluten.  

 

I'm not trying to discourage you from becoming gluten free, just understand what is all involved.  If you test negative for Celiac, you may be Gluten Intolerant and may benefit from a gluten-free diet and you would not suffer damage if you cheated, as a Celiac would, but may suffer the symptoms.

 

Personally, I would suggest getting tested if you suspect a problem.  

 

Welcome to the Forum.

 

Colleen

IrishHeart Veteran
IrishHeart
Posted

Hi zebra

 

We already "met" and talked about consomme, I believe? :)

 

I agree with Colleen. Get tested before you keep going forward. I know you have a number of other AI diseases that may very well be associated with celiac or gluten intolerance, so I suggest strongly that you get tested for celiac before you continue any further on the gluten-free diet. For celiac testing to be accurate, you need to be consuming gluten.

 

There are no valid tests for non-celiac gluten sensitivity at this time (despite what you may read on the internet)

 

Good luck and please, keep us posted.

Zebra007 Contributor
Zebra007
Posted
  • Author

Thank you both very much...I will need to have another colonoscopy in November so I can speak to my GI about having the test done then..what you both said makes sense!  thanks again!

IrishHeart Veteran
IrishHeart
Posted

Thank you both very much...I will need to have another colonoscopy in November so I can speak to my GI about having the test done then..what you both said makes sense!  thanks again!

 

 

That's now how celiac is DXed, hon.

Blood work for antibodies, then an endoscopy (the other end) with biopsy.

And again, you need to be consuming gluten for the tests to be valid

 

Read about testing here:

 

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1desperateladysaved Proficient
1desperateladysaved
Posted

Even though colonoscopy won't diagnose celiac, if you contact the GI doctor early, you may be able to add an endoscopy to your colonoscopy and do them at once.  My doctor said the endoscopy only takes about 10 additional minutes.

 

Dee

Tomislav Newbie
Tomislav
Posted

In my personal opinion i think that going Gluten free it's a healthier way of life.. but most of the people can't imagine having a gluten free life, because if you are somewhere in your mid.age it's going to be a bit difficult for you to get used to it. Doctors also recommend for patients that think they are gluten intolerant to eat atleast 1 or 2 weeks food that contains gluten, and than do the endoscopy (I didn't imagined that, that's something that i've heard from my gastroenterohepatologyst.) .

But if the blood test is negative and the endoscopy is fine,and you don't have any symptoms that indicates celiac, It's up to you whether you'll continue with the gluten-free diet or remove it.

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Zebra007 Contributor
Zebra007
Posted
  • Author

Thanks everyone.

  • 4 weeks later...
Zebra007 Contributor
Zebra007
Posted
  • Author

Hi Everyone,

 

I'm back.  Basically I decided to just stick with it.  The best news is that I was struggling with GERD and it seems to be going away, and really after my initial whinge i soon got into the swing of things, I just didnt want to go back to eating normally in order to have the test done, and I am glad I didnt, as I feel really good.

1desperateladysaved Proficient
1desperateladysaved
Posted

You have your answer than!  The final gold standard test is to try the diet, and respond to it and you passed that test!   I am glad to hear the GERD is clearing and hope it will continue.  I can relate to declining the gluten challenge.

 

Best wishes for health as you heal.

 

Dee

Zebra007 Contributor
Zebra007
Posted
  • Author

Thank you kindly Dee.

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