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

Where Do I Go From Here...


mama2

Recommended Posts

mama2 Apprentice

where do i go from here... I have suffered celiac (gastro and others) symptoms from as long as i can remeber ... in the last few years since I have had kids have been the worst (many unexplaned prgo problems,too). A year and half ago I went to see a GI here in ohio and was basically blown off. He took only 2 biops and that came back negitive. However I had "unexplained" damage to my intestants. I have never had blood test done. but have been to my family doctor for skin rashes and finally had a bilistery itchy rash break out about 2mths ago .... went to the doc about it... gave me stuff for the itching and sent me on my way. Well that was the day i have had enough suffering!!!!! Have been Gluten-free since! I feel great, everything from bones aching, to gastro, and skin problems GONE!!!! My husband says I have a pep to my step now. So my question is where do I go from here? Do I go see someone to get a official diognosis? and WHO? Am I allowed to join a local support group?

Thanks

Becky


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

If you feel better gluten-free, you don't need a doctor's permission to eat that way! :) And, yes, you can join a local support group ... many of us had negative tests and positive dietary response. Welcome.

mama2 Apprentice
If you feel better gluten-free, you don't need a doctor's permission to eat that way! :) And, yes, you can join a local support group ... many of us had negative tests and positive dietary response. Welcome.

Thanks for your help!

Guest j_mommy

If you did choose to go for an "offical" dx you would need to go back on gluten! For many the positive dietary response is enough!!!!

Good for you that you are feeling better and good luck! Welcome

mama2 Apprentice

Thanks. I am taking my daughter (who has lots of symtoms) to a GI at children's this week.

Katydid Apprentice

I think that's absolutely wonderful that you feel so much better now --in spite of the doctors. I have a dear friend who had a similar experience until she too decided she didn't need the doctors permission to go on the diet. (it was a GI doc and he refused her the blood tests if you can believe that)

Today that former weak, frail shell of a human being is vibrant, healthy beautiful woman. (no thanks to her doctor) She would say "Forget the tests and do what makes you feel good" and I would agree.

Enjoy you new good health!

holiday16 Enthusiast

Well, I had the blood test done 4 years ago and it came back negative. I did Enterolab last year and that came back positive. The dietary response has been amazing and I'm so much better now after having been sick for years. The closest I have to a diagnosis is the internal med. Dr. I saw said the "proof is in the pudding" and said I have gluten sensitivity. He offered to do a scope, but I would have to go back on gluten for that and I just can't. Both my daughters also react to gluten and I was quite surprised at how quickly they improved off of it and how much they react if they have any. I was going to try to get a good diagnosis for my oldest dd since I was afraid she wouldn't comply with the diet without it, but it's really just not worth the hassle. She was content with the Enterolab results and has been totally following the diet since she feels so much better.

Just curious where you get your flour and things since you live fairly close to where I am. I found a place in Fairborn that I like for getting rice flour etc.


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



Celiac.com Sponsor (A8-M):



mama2 Apprentice
Well, I had the blood test done 4 years ago and it came back negative. I did Enterolab last year and that came back positive. The dietary response has been amazing and I'm so much better now after having been sick for years. The closest I have to a diagnosis is the internal med. Dr. I saw said the "proof is in the pudding" and said I have gluten sensitivity. He offered to do a scope, but I would have to go back on gluten for that and I just can't. Both my daughters also react to gluten and I was quite surprised at how quickly they improved off of it and how much they react if they have any. I was going to try to get a good diagnosis for my oldest dd since I was afraid she wouldn't comply with the diet without it, but it's really just not worth the hassle. She was content with the Enterolab results and has been totally following the diet since she feels so much better.

Just curious where you get your flour and things since you live fairly close to where I am. I found a place in Fairborn that I like for getting rice flour etc.

I am finding shopping to be exausting right now... but here in dayton I like Traders Joes and Dorothy Lane market... they both have Gluten-free shopping guides on their websites. Where do you go in Fairborn?

My daughter is just going to be 3 and has lots of gastro problems and since I have had such a positive results from going gluten-free I am taking her to a GI doctor to see what they say. Fourtunatley she is not a picky eater and I may just go ahread and put her on the diet to see if it helps her.

CarlaB Enthusiast

I didn't see the city you live in ... I grew up in Centerville! I now live in Warren County ... Jungle Jim's is a GREAT place to shop for gluten-free. They have a large section devoted to it ... of course, in the context of the size of the store, it seems small. :lol:

Carraba's and PF Changs, by the Dayton Mall, both have gluten-free menus.

mama2 Apprentice
I didn't see the city you live in ... I grew up in Centerville! I now live in Warren County ... Jungle Jim's is a GREAT place to shop for gluten-free. They have a large section devoted to it ... of course, in the context of the size of the store, it seems small. :lol:

Carraba's and PF Changs, by the Dayton Mall, both have gluten-free menus.

Wow, thanks for the tips ... I'll have tocheck them out!

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. - Shellly posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      New labs are now very elevated

    2. - Scott Adams replied to Elena1234's topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?

    3. - trents replied to Elena1234's topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?

    4. - Russ H replied to Elena1234's topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?

    5. - Elena1234 posted a topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,174
    • Most Online (within 30 mins)
      7,748

    BarbieChloe
    Newest Member
    BarbieChloe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Shellly
      Hello, I was very stick,  with flu like symptoms, but my virus panel came back negative and we couldn’t figure out what’s going on. The doctor then added a celiac panel.  Has anyone ever had such a dramatic change?  What are the odds this is true celiac I am going to have an endoscopy, but it’s expensive and I just feel like why can’t the labs be enough? 
    • Scott Adams
      Eating out in general is full of risks, but this article may help:  
    • trents
      This kind of question is always difficult to give a definitive answer to because of so many variables. One such variable is the sensitivity of the individual celiac to small amounts of gluten cross contamination. An amount that causes a reaction in one celiac many not in another, or at least not be discernable which, of course, does not exactly equate to being "safe".
    • Russ H
      I don't live in the US, but based on this thread, I wouldn't risk it:   https://www.reddit.com/r/glutenfree/comments/1n2ehw8/cracker_barrel/   This app is helpful: https://www.findmeglutenfree.com/
    • Elena1234
      I see that Cracker Barrel restaurants have a gluten free menu (not all locations, but one confirmed that they do). I was wondering if it is safe for my 5 year old son with celiac disease? 
×
×
  • 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.