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

Questions To Ask The Doctor

Booghead

By Booghead
in Coping with Celiac Disease

Recommended Posts

Booghead Contributor
Booghead
Posted

Sorry to bug everyone again :P Doctors appointment tomorrow at 4:10 PM. My follow-up. He is going to tell me my biopsies were negative, I am hoping he will still dx me. I need a diagnosis for school and college in the future. I have some questions picked out to ask him, but I was wondering if you guys could think of anything i should ask?

I am going to ask him about neuropathy after someone posted about it I read up on it and have many of the symptoms.

I'm going to ask him about my stomach burning.

I'm going to ask him about cutting out dairy and soy.

I'm going to ask him about going gluten free and having normal bowel movements twice a day to eating gluten once and I am still having the once daily constipated bowel movements.

I'm going to ask him about this blasted back pain that is killing me as I type this. (someone said this could be from gall bladder problems)

I'm going to ask to get tested for food allergies (they run in the family) and I am sure there are other things I'm allergic too.

Anything you guys wish you had asked the doctor? Anything I am forgetting? Also tips on a difficult doctor, who may not be willing to diagnose on elimination diet and blood test? They have been very nice so far IMO.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

You are a wise woman for one so young. Writing down your questions so you don't forget is a great idea. Is your mom going, too? Make sure she has seen your questions & knows why you are asking before the appointment. She may want to add some. She may not realize some of the things you are asking about.

I forget , did you have a positive blood test? If so, you could still have damage that was missed on biopsy. There is 16-20 feet of small intestine. Taking 6 biopsies smaller than a sequin, might miss it.

Do tell him all the positive things of being gluten-free. He may want you to be stricter for a month or two and then eat gluten to see if it makes you sick.

Good luck!

Booghead Contributor
Booghead
Posted
  • Author

A gluten challenge sounds like torture. And I honestly don't even crave it anymore. Dairy though? I crave dairy daily. Hourly haha. And yes I did have a positive blood test. I will probably feel so good gluten free after another two months that nothing would make me eat it again. My mom is going. She's my ride. Getting my license in January but I don't think I would ever go alone. I need my mother for stuff like this.

beebs Enthusiast
beebs
Posted

Ask for a copy of every single test and results. I didn;t and it has made a mess of my diag.

kareng Grand Master
kareng
Posted

A gluten challenge sounds like torture. And I honestly don't even crave it anymore. Dairy though? I crave dairy daily. Hourly haha. And yes I did have a positive blood test. I will probably feel so good gluten free after another two months that nothing would make me eat it again. My mom is going. She's my ride. Getting my license in January but I don't think I would ever go alone. I need my mother for stuff like this.

Blood tests sometimes are negative but should be positive. But positive, is positive. You & Mom hold firm on that!

Get a note on his prescription pad that says you have Celiac and must not eat any wheat, rye or barley. You will need to bring your own food if special accomendatons cannot be met. I have a note like that so when I go to FIRST Robotics competitions, I can bring my food into arenas that don't allow food.

Good luck! Let us know what happens!

No celebrating at Appleby's! :o

kareng Grand Master
kareng
Posted

Ask for a copy of every single test and results. I didn;t and it has made a mess of my diag.

Oh yeah! This, too. Make sure you have all the blood test results, an op report or procedure report and a pathology report.

Did they test you for things like iron, ferritin, B12, vitamin D, calcium? These are things that can be low because you can't absorb them. It is also a good way to measure if you are healing. You can get the low ones repeated in 6 months to see if they got better.

domesticactivist Collaborator
domesticactivist
Posted

I agree you need to get copies of the tests, but I'd go a step further and get a copy of my entire chart. If you call ahead, the office can get it printed up for you. Usually the older records are archived and it takes some doing to get them. Reading through my chart and my kids' charts was enlightening! I haven't been able to get my childhood records which sucks! Do it now, and then get your new info annually in the future!

Last time I went in I brought in a statement of all the symptoms I had in addition to a list of questions. I brought a copy for the doctor to keep and put in my chart and a copy for myself to take notes on. This was great, and my doctor even appreciated it.

If you have more tests you would like run or have questions about, put those on the list. You might look into potential deficiencies.

Good luck!

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

Celiac.com Sponsor (A8-M):


rosetapper23 Explorer
rosetapper23
Posted

I agree that you need to be tested for common nutritional deficiencies. Since you're having neuropathy issues, be sure that he tests for B-12 and ferritin. Also, Vitamin D and Folic Acid can be low in celiacs.

Booghead Contributor
Booghead
Posted
  • Author

Big Bummer alert. My doctors appointment has been canceled, I live in Northern Utah and power is out in much of the state, and at my doctors office. 5 high schools were let out or canceled (mine not one of them of course I'm never that lucky). I am really bummed out. Waiting for so long and now I have to wait longer. *sigh*

ravenwoodglass Mentor
ravenwoodglass
Posted

Big Bummer alert. My doctors appointment has been canceled, I live in Northern Utah and power is out in much of the state, and at my doctors office. 5 high schools were let out or canceled (mine not one of them of course I'm never that lucky). I am really bummed out. Waiting for so long and now I have to wait longer. *sigh*

That is a bummer but the extra time will give you more time to have positive results from the diet. With positive bloods and an recovery from your symptoms that lead to the testing you should be able to get your 'official' diagnosis. Your regular GP can give you an order for the nutrient levels blood work and have copies sent from the lab to the GI so you don't have to wait to find out what you should be supplementing. Your GP might also give you the note you need for school if needed.

kareng Grand Master
kareng
Posted

Gives you more time to think of more questions! ;)

mamaw Community Regular
mamaw
Posted

I agree with all others..If he states you do not have celiac then ask about gluten intolerance or gluten sensitive...Now days they say there are 3 million un-dx'd celiacs running around the US.& more than that are the ones who are sensitive....soon we will take over the world!!!!

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. Haugeabs
      - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil. Gluten free but not certified gluten free. Soy free, GMO free.
    2. trents
      - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even...
    3. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    4. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    5. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    Donna Shields
    Newest Member
    Donna Shields
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.