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

Newly Diagnosed


kschmitz

Recommended Posts

kschmitz Newbie

Thank you for all of your kind responses. It is such a comfort to know that someone understands what I am going through. I have a loving, supportive family. However, they do not understand what they call my "obsession" to seek out and eliminate gluten from my life. They roll their eyes when I talk of cross contamination, labeling, and all of the other new vocabulary that I am still learning. So please keep posting, everyone, because this forum is a lifeline.


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



Celiac.com Sponsor (A8-M):



hthorvald Rookie

I know exactly what you mean. My friends and family were very supportive at first, but the eye rolling thing is a good clue that I've about saturated everyone with my knowledge of this disease.

And I agree, this forum is an excellent outlet to learn, vent or give advice, about this curious ailment. I now find myself talking to people I don't even know about things I thought I'd only share with my husband. Alas, I don't share as much with him anymore. Some things I do, because he really wants to understand this disease better. But most of the time, he looks forward to me returning to my "normal" diet and lifestyle.

H.

tarnalberry Community Regular

I think one of the things that helped me with regards to having people respect what you say about contamination is "less chat, more hat". Ok, the quote from The Simpson's falls apart a bit on those last two words, but basically, the idea was to stop talking about it, and just do it. In a friend's kitchen, I'd check which cutting board was reguarly used for bread, and when I got an inquisitive look, I'd just say that I want to avoid contamination - exactly with the confidence and self-assuredness (and, "I'm doing this no matter what"-edness) that I'd use for dealing with, say, raw poultry. I think they got tired, to a degree, with all the talking about it, when the important part is the action. (They were always receptive, but as much as they can respect the boundaries, it's not something they're going to spend much personal mental effort on, beyond what needs to be done to keep me safe.)

hthorvald Rookie

I agree about "action." I want to manage this disease, and not the other way around. I have gathered as much knowledge as one can in 4 months and it's time to step in to action and have this diet second nature to me. Probably easier said than done and this forum is a great place to ask questions.

H.

DoggiePaws Newbie

:) Hello everyone!

I was recently diagnosed (almost 2 weeks ago) and have been trying some glutten free foods for the past 3 days! I need a little help...where do I go from here? There is no support group here where I live (I have even researched and have yet to find one in this whole state). What kind of advice would you give to a recent newbie who had never even heard of Celiac Disease until almost 2 weeks ago? :(

tarnalberry Community Regular

Doggie - the best advice I can give is to eat simply. I don't mean boringly, I mean stick with whole foods, and unprocessed foods. The produce aisle, the meat counter, the aisle with beans and rice, and the spice aisle are all you need to make a lot of very tasty food. (Ooops, and the dairy case, if you can have dairy.) (And a caveat on the spice aisle - avoid the "seasoning mixes" until you are comfortable reading ingredients and calling companies, but the common brands of pure spices tend to be gluten-free.)

Take some time to read through the resources on this site (particularly the safe/unsafe list), browse through the topics on the boards, and do some google searches on celiac, gluten intolerance, and gluten free diet. It'll take some time to get familiar and comfortable with the diet, but you're already on the right track by asking questions.

If you note where you're from, someone may know of a support group in the area.

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.