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

New At This.


GlutenStinks15

Recommended Posts

GlutenStinks15 Explorer

I was diagnosed a month ago and am still somewhat reeling. I have always been a label reader, now I'm just looking for gluten/wheat/barley/rye/farina/etc in addition to everything I was looking for prior to this.

 

I purchased this book: Open Original Shared Link to use as a guide. If something's in this book, then I look to purchase it but still check the label because I know that companies change ingredients and processing equipment/procedures at the drop of a dime.

 

I have found that Outback Steakhouse and Pizzeria Uno's have good gluten free menus and Outback even has a flourless brownie (and it's yummy.)

 

Trader Joe's was always someplace I shopped, now I'm there more often.

 

My symptoms are getting better, but I'm not sure how long it will be before they are gone.

 

Finding this site and the forums has been a great help. Until now I was just a voyeur, reading posts and getting information, but today I wanted to introduce myself, say hello, and say thank you to all of you because your posts are helping me every day.

 

 

 


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



Celiac.com Sponsor (A8-M):



dani nero Community Regular

Welcome, nice to meet you, and congratulations on starting your journey of healing :-)

IrishHeart Veteran

Welcome to the family! :)

 

May I direct you to: 

 

(1) this thread for newbies

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

 

and  

(2)   I recommend:

 

"Find Me Gluten Free"  for dining out

 

and

 

(3) I also recommend this must-read book:

 

Real Life with Celiac Disease

by Melinda Dennis and Daniel Leffler

 

Best wishes to you! we're here for you!

1desperateladysaved Proficient

Greetings Glutey,

 

I hope all continues going well for you!

 

Diana

mickey1975 Newbie

Hi guys, my name is Michael I'm 38 years old and i've known for certain I have had celiac disease for about a year. However I do not know how long I've been living with this disease nor do I know the extent of the damage done. I have been avoiding things with gluten for the better part of a year but as of recent i've gotten serious about avoiding all things with wheat. My question is; does early or moderate stages of villious atrophy reverse its self over time if strict adherance to the proper diet is maintained?

 

psawyer Proficient

Welcome, Michael,

 

Yes, the vast majority of people do heal after time on a strict gluten-free diet. I had significant damage at the time of my diagnosis. A follow-up examination five years later found no evidence at all of celiac disease in my intestines.

mamaw Community Regular

Hello & Welcome....you  have found  a  great  place  ......


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



Celiac.com Sponsor (A8-M):



anti-soprano Apprentice

Hello Gluten Stinks (great name!) and Michael!  I wish both of you luck on your gluten-free journey.  

 

Michael, I'm a bit confused about how you've been avoiding gluten, but just now have gotten serious about avoiding wheat... cause gluten is in wheat.  Maybe I'm missing something? It certainly wouldn't be the first time!  :)  But your statement makes me believe you haven't excluded all gluten. Please correct me sternly if need be!  I would encourage being strict about your diet earlier rather than later.  Believe you me, you don't want years and years of damage (and if you're eating gluten in any amount- there will be damage given your diagnosis).  Let us know if we can help.  

 

Shellie

cyclinglady Grand Master

Welcome, Michael,

 

Yes, the vast majority of people do heal after time on a strict gluten-free diet. I had significant damage at the time of my diagnosis. A follow-up examination five years later found no evidence at all of celiac disease in my intestines.

Wow!  That's what I want to hear from my doctor in five years!!!!!  I have complete confidence that I will adhere strictly to the gluten-free diet, since I've been taking care of my gluten-free hubby for the past 12 years and I've never glutened him (restaurants have though.....)  I have been worried about healing based on the research I've seen, so it's great to find a someone who is well!  

 

Thanks!

GlutenStinks15 Explorer

Hello Gluten Stinks (great name!) and Michael!  I wish both of you luck on your gluten-free journey.  

 

Michael, I'm a bit confused about how you've been avoiding gluten, but just now have gotten serious about avoiding wheat... cause gluten is in wheat.  Maybe I'm missing something? It certainly wouldn't be the first time!  :)  But your statement makes me believe you haven't excluded all gluten. Please correct me sternly if need be!  I would encourage being strict about your diet earlier rather than later.  Believe you me, you don't want years and years of damage (and if you're eating gluten in any amount- there will be damage given your diagnosis).  Let us know if we can help.  

 

Shellie

Thank you all for your replies :)

When I first got diagnosed I felt really lost until I found this forum.

 

Michael, the first thing I did was research, research, research. The more you know about gluten, and especially what ingredients it is hiding in, the better armed you are to keep it out of your stomach! I went to see a nutritionist twice, and am constantly emailing companies for information.

IrishHeart Veteran

 I have been worried about healing based on the research I've seen, so it's great to find a someone who is well!  

 

There are many of us on here who can tell you they are well and healing. Some of us came back from the "walking dead" even.

 

Hang in there. Time and patience. These two things are essential. :)  

w8in4dave Community Regular

I love the newbie thread !! I am also new at this!! Cannot w8 to learn more!! And more and more!! 

eers03 Explorer

Welcome, Michael,

 

Yes, the vast majority of people do heal after time on a strict gluten-free diet. I had significant damage at the time of my diagnosis. A follow-up examination five years later found no evidence at all of celiac disease in my intestines.

Thanks for sharing this.  VERY encouraging!

notme Experienced

when i was a newb, this place saved my life.  i would say "sanity" but y'all know me....  ;)

 

welcome to the best club you never wanted to join lolz 

GlutenStinks15 Explorer

Agreed. This place really did save me. I was ready for despair, and found you all and my outlook changed almost immediately.

 

Thank you AGAIN!!!!   :D

IrishHeart Veteran

I love the newbie thread !! I am also new at this!! Cannot w8 to learn more!! And more and more!! 

 

Yaay!! Your positive attitude will help your recovery and adaptation to this "new normal" more than anything else!! :)

IrishHeart Veteran

when i was a newb, this place saved my life.  i would say "sanity" but y'all know me....   ;)

 

welcome to the best club you never wanted to join lolz 

 

yes, we DO know you  :lol:  and yes, "the best club you never wanted to join" --classic!!!

 

Agreed. This place really did save me. I was ready for despair, and found you all and my outlook changed almost immediately.

 

Thank you AGAIN!!!!   :D

 

Yaay!!  :lol: hang in there, hon--it gets better and better!

HarryCat Newbie

HI Gluten Stinks and The Rest,

 

I too am a recent entrant into the Coeliac mind field. I was diagnosed with no symptoms (during a routine check up) and since then things have taken a turn for the worse! Now that I am trying to keep gluten out of my diet I am finding myself reacting to it if I accidentely eat it. Tonsilitis set in not too long after the diagnosis for two months closely followed by the office cold/flu that is going around.

 

I am very much looking forward to the day that things start to improve. Heading to the toilet 6-7 times a day and feeling constantly constipated is starting to take its toll. As is no exercise and just being constantly exhausted.

 

However, this site and these forums give me hope that things will improve and hopefully I can stop being such a wind bag (in more ways then one!).

 

Thanks for all the info - it's very much appreciated.

 

Cheers

HC

GlutenStinks15 Explorer

HI Gluten Stinks and The Rest,

 

I too am a recent entrant into the Coeliac mind field. I was diagnosed with no symptoms (during a routine check up) and since then things have taken a turn for the worse! Now that I am trying to keep gluten out of my diet I am finding myself reacting to it if I accidentely eat it. Tonsilitis set in not too long after the diagnosis for two months closely followed by the office cold/flu that is going around.

 

I am very much looking forward to the day that things start to improve. Heading to the toilet 6-7 times a day and feeling constantly constipated is starting to take its toll. As is no exercise and just being constantly exhausted.

 

However, this site and these forums give me hope that things will improve and hopefully I can stop being such a wind bag (in more ways then one!).

 

Thanks for all the info - it's very much appreciated.

 

Cheers

HC

HC,

Things really will improve. In a little over four weeks my symptoms are reduced. It can take many months for them to completely go away (I am told) but you will see and feel the change.

My stomach cramping went away rather quickly, and that was the most painful symptom for me. Sometimes I'd be doubled over...

Hang in there!!

eers03 Explorer

when i was a newb, this place saved my life.  i would say "sanity" but y'all know me....   ;)

 

welcome to the best club you never wanted to join lolz 

Well said.  I'm kinda feeling the same way.  It helps me a lot.

GottaSki Mentor

Welcome!!! 

 

I'm stealing from Notme....

 

The most awesome club you never wanted to join!!!  or something like that ;)

 

We've all been thru it...so hang out and keep laughing -- it really does make everything better.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,667
    • Most Online (within 30 mins)
      7,748

    bailey1023
    Newest Member
    bailey1023
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.