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

Finally! Some Doctors Do Listen

samantha79

By samantha79
in Introduce Yourself / Share Stuff

Recommended Posts

samantha79 Newbie
samantha79
Posted

Hi everyone,

I will apologise in advance if i rant and make this topic overly long but for the first time in ages i am some what getting there with doctors and my kids.. :) My 7yr old daughter has shown the symptoms of Coeliac for the past 2 years! She also carries one of the genes for it. I had all of my children gene tested when i was diagnosed, although i have only been diagnosed for just about 16months now i have been taking my daughter to multiple doctors to find out why she suffers constant stomach pains which at times reduce her to tears. fluctualting bowel motions, headaches, tiredness, iriitability and so on and so on... <_<

Every doctor i took her to would feel her tummy check her temp and send her on her way..

That was until i moved to a new town went to a new doctor and next thing i know i'm with a paediatrician who upon 15min appointment referred her to a gastroenterologist :D I am nervous for her now as this wednesday she goes in for her endoscope.. I am hoping we are about to get to the bottom of her problem. :D

BUT,

The doctor i took her to that referred her to the paed has now left the doctors practice i took her to so i had to make an appointment for my 6 yr old son with a different doc!

Low and behold i back to square one :angry: My son had full coeliac screen done 8 months ago and came back borderline on these results, the doc back then said he would leave him for 6 months and then see what the next lot of results are.. So i go see new doc explain about last test results and he won't redo blood work!!!

According to this doctor there is no need to rush to do these tests as even if he is a coeliac there isn't anything to do for it.. Then tried to tell me, a diagnosed coeliac that it has nothing to do with gluten!!

As you can imagine i grabbed my sons hand, told the doctor to go back to school and proceeded out the door!!

So i again on the search for a doctor that knows what their doing ;)

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

While not ideal for many, if you are having trouble finding a doctor and getting your daughter tested for Celiac, it may be worth it to try the diet to see if it relieves her symptoms.

Maybe others will have some good ideas. Good luck.

amber Explorer
amber
Posted
Hi everyone,

I will apologise in advance if i rant and make this topic overly long but for the first time in ages i am some what getting there with doctors and my kids.. :) My 7yr old daughter has shown the symptoms of Coeliac for the past 2 years! She also carries one of the genes for it. I had all of my children gene tested when i was diagnosed, although i have only been diagnosed for just about 16months now i have been taking my daughter to multiple doctors to find out why she suffers constant stomach pains which at times reduce her to tears. fluctualting bowel motions, headaches, tiredness, iriitability and so on and so on... <_<

Every doctor i took her to would feel her tummy check her temp and send her on her way..

That was until i moved to a new town went to a new doctor and next thing i know i'm with a paediatrician who upon 15min appointment referred her to a gastroenterologist :D I am nervous for her now as this wednesday she goes in for her endoscope.. I am hoping we are about to get to the bottom of her problem. :D

BUT,

The doctor i took her to that referred her to the paed has now left the doctors practice i took her to so i had to make an appointment for my 6 yr old son with a different doc!

Low and behold i back to square one :angry: My son had full coeliac screen done 8 months ago and came back borderline on these results, the doc back then said he would leave him for 6 months and then see what the next lot of results are.. So i go see new doc explain about last test results and he won't redo blood work!!!

According to this doctor there is no need to rush to do these tests as even if he is a coeliac there isn't anything to do for it.. Then tried to tell me, a diagnosed coeliac that it has nothing to do with gluten!!

As you can imagine i grabbed my sons hand, told the doctor to go back to school and proceeded out the door!!

So i again on the search for a doctor that knows what their doing ;)

Are you in Victoria, Aust. or Victoria, Canada. If you are in Victoria Aust. please call the coeliac society and have a chat to them there and they will give you a list of gastroenterologist (pediatric) specialists to see. I am very surprised at your experiences as generally most Australian doctors are well informed about coeliac disease. You need to get a referral to a pediatric gastro who will sort it all out for you. There are always going to be a few doctors who have no idea or are not up to date but it seems you have struck a few of them.

Good luck.

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
      12

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

      @catnapt, I apologize. Obviously I've confused you with someone else. I have vision problems due to undiagnosed Celiac complications. Being legally blind, y'all look the same from here. You still have not said which new medication you started taking. Parathyroid disorders can affect antibody production. Bone Loss Correlated with Parathyroid...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    5. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

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

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    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,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
×
×
  • 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.