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

Gluten Free: Day 1


mrsmuffin

Recommended Posts

mrsmuffin Newbie

Hello all! I was diagnosed with Celiac and have started my new way of living. I am pretty much asymptomatic, and was diagnosed through biopsy because I went to have a colonoscopy and upper endoscopy due to severe anemia. I really believed that my anemia was due to heavy periods, but they wanted to rule out colon problems since my grandfather died from colon cancer. Thank goodness my GI doctor wanted to do the upper endoscopy also. He told me yesterday that he really was not expecting me to have Celiac, but that was indeed the case.

I am also planning on having my 11 year old tested as he has had digestive issues for the past few years, and I am wondering if this could be the answer to a lot of questions.

Anyway, I just wanted to introduce myself. I have already learned a lot by reading some posts, and can see that this is a very supportive community!

-Holly


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Hello & Welcome to Our group...

I can say without a single doubt this gluten free lifestyle change is way better than colon cancer...Glad you found the correct path to follow. Being gluten-free is not always easy or convienent but it is all worth the learning curve to be healthy. If you have questions please ask...

squirmingitch Veteran

Welcome Holly! There are great people on this board. Everyone is sooooo helpful. And BOY!, are you ever fortunate to have a doctor "in the know" or at least not obtuse to the fact that celiac disease exists. Get your son tested & don't let him go gluten free until all the testing is done with otherwise it will skew the test results.

pianoland Rookie

You're so fortunate to have found out despite not having any symptoms. Although, I wouldn't be surprised if you start to see improvements in your health/energy in the next few months. I didn't realize how tired I was before I went gluten free.

I know it's overwhelming at first but it becomes second nature.

Raven815 Rookie

Welcome Holly,

I am also new here and I am so thankful I found this board. They are some of the most warm and caring people I have ever come across. I believe I have DH and I was so prepared when I went to an uneducated derm just from reading about it here. I thought I knew a lot about celiac (Mom has had it for about 30 years), but I now realize that I am just scratching the surface.

Laura :P

Mateto Enthusiast

Hello! You'll learn a lot, even some things you didn't want to know....but then later on you realise how happy you are you've learnt it!

GFinDC Veteran

Welcome to the site Holly (MrsMuffin),

There are some other people on the forum who don't have symptoms also. Most likley your doctor found it before symptoms developed. But there is a chance you will notice things improving as you go that you didn't realize were symptoms also. It might be a good idea to write down what you eat each day and how you feel, including mood and energy. Celiac has around 300 symptoms and they are not all digestion centric.

Here's some light reading for starters. Feel free to ask questions too. We all learned from scratch also. :)

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Hello and welcome!

May I also point you to this thread--more "light reading for you" :lol: (and so I do not bore everyone to death by writing it all it again )

Maybe something on here will help.

Best wishes to you!

IH

mrsmuffin Newbie

Thank you all for the warm welcome! I am so happy to get any information that I can. I know that I will see improvement in ways that I didn't even realized needed improvement!

I just heard back from my son's pediatrician this morning and he was indeed biopsied last year when he had an upper endoscopy. I am glad that he does not have Celiac at this time, but I was also looking forward to a possible explanation for the issues that he has had. We will keep goign on his current plan and I will have him tested again in a few years.

Thanks again for all of the support!

Archived

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

  • 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. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,473
    • Most Online (within 30 mins)
      7,748

    Kelly Hannon
    Newest Member
    Kelly Hannon
    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

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.