Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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


SMRI

Recommended Posts

SMRI Collaborator

I was diagnosed a couple weeks ago with Celiac so I'm starting my journey with this new life :D.  My test results were :

 

Open Original Shared Link  32.2  >10 being positive

 

Open Original Shared Link 66.5  >30 positive

 

Open Original Shared Link 17.6  >9 positive

 

Open Original Shared Link  23.5  with <20 being positive

 

my biopsy was also positive and I have the genetic pairs so it's a pretty sure thing I guess.

 

So, I go back to the doctor at the end of the month to meet with the GI Celiac team and was told to not stop Gluten until I see them...so, I'm eating all the stuff I love that I won't be able to eat :D.  I'm here to just absorb information and learn about this new way of life.  I bought my first real gluten free food today to try-it was on sale at the grocery store!

 

So, hello to all and I look forward to getting to know everyone here!


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



Celiac.com Sponsor (A8-M):



SMRI Collaborator

That question is high on my list of questions to ask when I go back.  Everyone here talks about being "glutened" and having reactions right away, will that happen to me, who is fairly symptom free other then bathroom issues, but, after I totally cut out gluten, will the reactions come harder???  I'm also looking forward to the holiday season and if I have a cookie or two after being gluten-free until then, what happens? I am sure everyone is different but I don't run to the bathroom now every time I eat something with gluten so who knows :D.

GottaSki Mentor

Hello!

And Welcome!

Take a look around and let us know how we can help your transition :)

Here is a great start:

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

LauraTX Rising Star

Welcome to the Silly Yak Club!  Usually with a solid celiac diagnosis, which it seems like you have, they tell you to go gluten-free right away.  Better to follow what was told to you in case they want to do further testing, though.  You can take this time to learn and ease into the gluten-free lifestyle, and once you get the order, it is strictly gluten-free from then on!  We have a great bunch of people here with a lot of helpful ideas, so please feel free to ask anything!  If you read a post that has whether or not something is gluten-free on it, pay attention to the date because this forum has been around a long time,and products can change over time.

SMRI Collaborator

Welcome to the Silly Yak Club!  Usually with a solid celiac diagnosis, which it seems like you have, they tell you to go gluten-free right away.  Better to follow what was told to you in case they want to do further testing, though.  You can take this time to learn and ease into the gluten-free lifestyle, and once you get the order, it is strictly gluten-free from then on!  We have a great bunch of people here with a lot of helpful ideas, so please feel free to ask anything!  If you read a post that has whether or not something is gluten-free on it, pay attention to the date because this forum has been around a long time,and products can change over time.

 

I think they wanted me to wait because there is one doctor doing a study and maybe some further tests???  He is doing a genetic study I think and I was originally tested because I have a relative with Celiac and had a few symptoms, mainly fatigue and bathroom issues :D.  I haven't met with the GI team yet either so some of that scheduling was due to my schedule too.  I have a few other things going on that they are looking at as well and I'm on a restricted calorie diet so that pretty much eliminates a lot of Gluten products, breads, pasta, etc., because of the calorie count.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to emily 1's topic in Coping with Celiac Disease
      6

      Black Pepper Reactions

    2. - dixonpete commented on dixonpete's blog entry in Pete Dixon
      8

      A video with researcher William Parker about Helminthic Therapy

    3. - Mari replied to dlaino's topic in Coping with Celiac Disease
      6

      Coping with celiac

    4. - trents replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increasing symptoms after going gluten free

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

      Increasing symptoms after going gluten free


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,001
    • Most Online (within 30 mins)
      7,748

    Sue Hill
    Newest Member
    Sue Hill
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Emily, What you described is very similar to what I experienced in coping with Celiacs. I think my first symptoms started when I was about 3 and I wasn't diagnosed until I was almost 70. I got along OK util I was about 30  when I began to have more problems that the Drs thought was an autoimmune problem that they couldn't identify. Then I worked in medical labs in Bolivia for 8 months and returned to the US with more problems such as sensitivities to chemicals and increasing food intolerances. I had always had canker sores in my mouth and nose but have not had any now  since I went strictly gluten free. Before I was gluten-free I became very sensitive to hot peppers and then I could not eat anything spicy such as cinnamon, turmeric or black peppers. I have not eaten any nightshades for years. No corn or soy.  My diet now is lamb stew with rice, squash, green beans, chard, kale, collards with salt. Then eggs , chard, spinach, black beans, summer squash, asparagus, rice and salt. I eat peanuts for snacks. I have been eating nuts but may have to stop. Coconut is OK but too much sugar is not.  I am very cautious about adding back foods to my diet but hope to add back small amounts of turmeric. Take care.
    • Mari
      mcg Vit. B12Hi dlaino  - You mentioned that you are now feeling sick all the time. If this is making you miserable you might want to go to your health provider, describe what you are feeling and your symptoms so that theySome of the people here can give you useful advice about taking supp;ements and the amounts you could take to improve your overall health. I have increased my Vit. B12  can help you figure out what is happening. Just because you have gluten intolerance does not mean that your current problems are related to that. Some of the people here can give you useful advice about supplements and how much to take for improved health. I recently upped my Vit. D3 from 50 mcg to 150 mcg and now take either 500 mcg or 1000 mcg of vit. B12 sublingual daily instead of once a week.                                    Take care
    • trents
      Welcome to the forum, @Tyoung! It is possible that you are experiencing some kind of gluten withdrawal but I would thing that would have started to subside by now. There are a couple of possibilities that come to mind. One is the polysaccharide ingredients that are typically found in prepackaged "gluten-free" wheat flour facsimile foods. If you read the ingredient lists of such foods you will usually find things like guar gum and xanthan gum. Their function is to give the product a texture similar to wheat flour but they are hard to digest and give many celiacs digestive issues. I mention this not knowing if you are relying on prepackaged gluten free food items to any extent or are just choosing carefully from mainstream naturally gluten free food items. Another is that your body is just going through adjustment to a major dietary change. Wheat is a significant component to the typical western diet that supplies certain nutrients and some fiber that has now been withdrawn suddenly. Are you experiencing any constipation? Also be aware that foods made from gluten-free flour are typically devoid of nutritional value. Wheat flour is mandated by government regulations to be fortified with vitamins but gluten-free flours are not. It can be smart to compensate for this with vitamin and mineral supplements. Still another possibility is that in addition to being gluten intolerant, your also have other food intolerances. One small study found that 50% of celiacs reacted to dairy like they do gluten. That number may be on the high side in reality and more research needs to be done. However, it is true that dairy intolerance is very common in the celiac community. Another common "cross reactive" food is oats. There are certain foods whose proteins closely resemble gluten and cause the same reaction. About 10% of celiacs react to the protein "avenin" in oats like the do the protein gluten. You might try eliminating dairy and oats for a few weeks and see if your symptoms improve.
    • Tyoung
      Before my diagnosis I would consider myself pretty much asymptomatic other than a few flare ups of what I previously thought were ibs symptoms. After having iron deficiency as well I had a positive blood test and EGD. I have now been gluten free for about a month but my symptoms have gotten worse. I now have bloating, acid reflux, and pain in the upper abdomen on and off most days. I am pretty positive I am not being glutened as we overhauled our whole house to be gluten free and haven’t eaten out since the diagnosis. Has anyone else experienced a worsening of symptoms after going gluten free? Will it subside? Or is there something else I should be concerned about. Thank you! 
    • RMJ
      That is strange.  Other pages talk about testing. The one thing I like about GFCO is that the handbook for their certification process is available on their website.  I may not agree with the whole process, especially the reduced testing, but at least I can see what the process is. I wish the other certifying organizations would publish their processes. GFCO 2024 manual
×
×
  • Create New...