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

Visit With Primary Care Doctor

laura1959

Recommended Posts

laura1959 Apprentice
laura1959
Posted

Some of you may recall my introductory post where I mentioned recently having multiple medical tests coming back with abnormal results.  I'd arranged for a visit with my doctor to go over those results, suspecting celiac.  

 

Well, I saw my primary care doctor today, and he agreed. He told me to stop eating gluten and gave me orders for a celiac blood test. He also said that the test would not be definitive. If it comes up positive, we have an answer but he said that there are many false negatives. I knew this, but was glad to hear him say it. He said that if I get a negative result I should stay on the diet for at least six to eight weeks before deciding if it's working for me or not. Of course, if it's positive, I stay on the diet for life.

 

I am relieved that I didn't have to argue with him to get this test.  He said he has many patients on a gluten free diet who are feeling better than they ever did with gluten in their systems.  What a relief to have that out of the way. 

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Some of you may recall my introductory post where I mentioned recently having multiple medical tests coming back with abnormal results.  I'd arranged for a visit with my doctor to go over those results, suspecting celiac.  

 

Well, I saw my primary care doctor today, and he agreed. He told me to stop eating gluten and gave me orders for a celiac blood test. He also said that the test would not be definitive. If it comes up positive, we have an answer but he said that there are many false negatives. I knew this, but was glad to hear him say it. He said that if I get a negative result I should stay on the diet for at least six to eight weeks before deciding if it's working for me or not. Of course, if it's positive, I stay on the diet for life.

 

I am relieved that I didn't have to argue with him to get this test.  He said he has many patients on a gluten free diet who are feeling better than they ever did with gluten in their systems.  What a relief to have that out of the way. 

Great!  But keep eating gluten until you have exausted all possible tests.

notme Experienced
notme
Posted

 

 

I am relieved that I didn't have to argue with him to get this test.  He said he has many patients on a gluten free diet who are feeling better than they ever did with gluten in their systems.  What a relief to have that out of the way. 

your body's response to the gluten-free diet is also used as one of the diagnostic 'tools' - my doctor took this into account when she dx'd me.  i started gaining weight almost immediately - very happy to see my cheeks again.  both sets ;)  welcome and good luck!

laura1959 Apprentice
laura1959
Posted
  • Author

I was off gluten for five days, and he asked me about that.  I told him that I had a lot of brain fog and sleepiness but that my gastrointestinal problems seemed to improve.  Since going back on the gluten again I've started having urgency and am back to feeling bloated.  

1desperateladysaved Proficient
1desperateladysaved
Posted

I hope you will get definitive answers, but am glad the doc allows you on the diet now.  I just hope he doesn't want a gluten challenge later.

 

D

laura1959 Apprentice
laura1959
Posted
  • Author

I can't think of any reason he would.  He seemed pretty accepting of the likelihood that this was my problem, and very positive about the benefits of a gluten-free diet.  I think that if, for some reason, he were to suggest that, I would just tell him no.  I don't have to do everything the doctors suggest.  

nvsmom Community Regular
nvsmom
Posted

Sounds like a good doctor.  :)

 

I would suggest giving the diet closer to 6 months before you re-assess how it has helped you (if tests are negative). Keep a journal so you can see how symptoms change over time. Yes, the gastro symptoms usually improve pretty quick but the other ones (neuro or pain) sometimes make a rebound. I remember feeling really really good three months into the diet but by four months in I had an arthritic attack, huge fatigue, and a few other problems that cleared up in a few months. Recvery is often two steps forward, then one step back. KWIM?

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. Me,Sue
      - Me,Sue posted a topic in Introduce Yourself / Share Stuff
      0

      Knowing what to do when feeling unwell.

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed...
    2. Francis M
      - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    3. Scott Adams
      - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular? Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,852
    • Most Online (within 30 mins)
      7,748
    LG2
    Newest Member
    LG2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Nausea

      By Scott Adams · Posted

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • 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.