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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,366
    • Most Online (within 30 mins)
      7,748
    caroljben
    Newest Member
    caroljben
    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

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.