Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    2. - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    3. - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    4. - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

    5. - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,125
    • Most Online (within 30 mins)
      10,442

    psasso76
    Newest Member
    psasso76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • cristiana
      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...