Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hi

Zebra007

Recommended Posts

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.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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:

 

Open Original Shared Link

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Oliverg
      - Oliverg posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Glutened

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar. 2 hours later I was throwing up violently on my hands and knees over the loo. .horrendous stomach pains, My hair was wet fro...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      19

      My journey is it gluten or fiber?

      Yes, do take your B Complex with Benfotiamine or Thiamax. Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day. Taking them too close to bedtime can keep you too energetic to go to sleep. The Life Extension Benfotiamine with Thiamine is Benfotiamine and...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      19

      My journey is it gluten or fiber?

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state...
    4. olivia11
      - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    5. knitty kitty
      - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent. People of Mediterranean descent have HLA DQ 7. People of Asian descent have HLA DQ 9. There's other Indigenous populations that have other HLA genes that code for Celiac disease. Are you still having symptoms? What do...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,758
    • Most Online (within 30 mins)
      7,748
    danetta
    Newest Member
    danetta
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Oliverg
      Glutened

      By Oliverg · Posted

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      Yes, do take your B Complex with Benfotiamine or Thiamax.  Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day.  Taking them too close to bedtime can keep you too energetic to go to sleep.   The Life Extension Benfotiamine with Thiamine is Benfotiamine and Thiamine Hydrochloride, another form of thiamine the body likes.  The Thiamine HCl just helps the Benfotiamine work better.   Read the label for how many milligrams are in them.  The Mega Benfotiamine is 250 mgs.  Another Benfothiamine has 100 mgs.  You might want to start with the 100 mg.    I like to take Thiamax in the morning with a B Complex at breakfast.  I take the Benfotiamine with another meal.  You can take your multivitamin with Benfotiamine at lunch.   Add a magnesium supplement, too.  Thiamine needs magnesium to make some important enzymes.  Life Extension makes Neuro-Mag, Magnesium Threonate, which is really beneficial.  (Don't take Magnesium Oxide.  It's not absorbed well, instead it pulls water into the digestive tract and is used to relieve constipation.)  I'm not a big fan of multivitamins because they don't always dissolve well in our intestines, and give people a false sense of security.  (There's videos on how to test how well your multivitamin dissolves.).  Multivitamins don't prevent deficiencies and aren't strong enough to correct deficiencies.   I'm happy you are trying Thiamax and Benfotiamine!  Keep us posted on your progress!  I'm happy to answer any questions you may have.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
    • olivia11
      suggest gluten free food

      By olivia11 · Posted

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      GI DX celiac despite neg serology and no biopsy

      By knitty kitty · Posted

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.