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

Is This A Coincidence, Doctor?!


Mballerina

Recommended Posts

Mballerina Explorer

SO my doctors yell at me for going gluten free, well it tool 8 months of pain so they can deal with it.

They tell me that I can't have celiac disease because I have constipation and inconclusive serology, ha, even though I have all the symptoms.

Well, is it a coincidence that I have suffered for four years ( at the beginning, 14, I stopped growing and lost my period. I have been gluten free for two months and wow guess what, I grew 2cm and my period came back today for the first time in four years.

Sorry I needed to rant.

Thanks guys for your support all these months,

Magdalena Tywoniuk :ph34r::PB)


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



Celiac.com Sponsor (A8-M):



burdee Enthusiast

I also had constipation (all my life) and amenorrhea (for 10 years), so my doctors never suspected celiac. I had many other celiac symptoms, including the infamous "IBS" stuff, but the constipation made me not consider celiac. Only after my abdominal pain became daily and excruciating, did I read a celiac article which listed constipation as one of the symptoms. Going gluten-free helped reduce many of my 'IBS' symptoms (bloating, pain and gas), but eliminating the dairy (after my dairy intolerance diagnosis) made me 'regular' for the first time in my life WITHOUT laxatives, fiber pills or other constipation remedies. :lol: I eat lotsa fruits and vegies and try to choose the higher fiber gluten-free grains, but avoiding dairy did more for regularity than anything else I tried. ;) Unfortunately, it's too late to resolve the longterm amenorrhea--I'm postmenopausal now. :(

BURDEE

tarnalberry Community Regular

magdalena, you might consider printing out the NIH's position paper that came out of their conference earlier this year which stated that constipation could be a symptom and cannot be used to rule out celiac disease.

Mballerina Explorer

i've read the nih report (as my doctors should) they tell me i am playing doctor and should not be reading 'internet junk'. i'm thinking of just paying for the enterolab test.

tarnalberry Community Regular
i've read the nih report (as my doctors should) they tell me i am playing doctor and should not be reading 'internet junk'. i'm thinking of just paying for the enterolab test.

Wow! If the doctor new you were talking about the summary of the National Institute of Health's conference and he still called it "internet junk", I'd get a new doctor, as he clearly wouldn't care about progress in his field.

wclemens Newbie

Hi Magdalena,

I'm so glad you are feeling so much better. I've had Celiac symptoms since the age of 8, and that has been many, many years. I finally realized that doctors didn't seem to know what was going on with me, and started elimination diets of various kinds, concluding that all grains, milk, dairy, egg whites, and yeast were poison for me (this was after I finished all the allergy testing and years of shots ordered by doctors).

A year and a half ago I ordered a complete Enterolab test for my newborn grandson, because he couldn't tolerate any milk. He was diagnosed with Celiac and intolerance to all milk products. Next I ordered a test for all my family member for last Christmas. My sister also has Celiac, my brother doesn't, and the others haven't taken the test yet. I think that Enterolab is so wonderful for offering these tests in such a workable fashion, where you take a stool sample in the comfort of your own home, and once you send the sample off (UPS picks it up at your doorstep) Enterolab sends you the results by email. What could be easier than that?

Best wishes to you as you recover and find the hope and joy that go along with realizing that you have a whole new life awaiting you. I wish you well! Welda

flagbabyds Collaborator

I would say the doctors don't know you as well as you know yourself. You know what makes you sick and you know what doesn't. You don't need a firm doctors diagnosis to be celiac. YOu just need to know that you get sick from gluten so you know to avoid it. IT is as simple as that


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



Celiac.com Sponsor (A8-M):



stef-the-kicking-cuty Enthusiast

Hi Magdalena,

i consider taking the enterolab test as well, because my blood tests were negativ and i haven't had the biopsy. Now i'm glutenfree and for the biopsy i would have to go back on gluten. That's why i chose the enterolab test. If your doctor reacts so stupid, i would go to another doctor. And why does he acuse you of playing doctor? Somebody has to do something and if he is uncapeable, then you have to take care of yourself. Don't let him talk stupid. My opinion is you do the right thing. I had also lots of pain every month. Now that i'm glutenfree i don't have pain anymore. I'd say, you know best what's good for your body.

Hope you get well soon, Stef

plantime Contributor

Yep, I had a doctor that told me all of the stuff I read is nonsense and untrue. Now I have a doctor that is glad I take responsibility for my health and research things. Amazing what changing doctors can do!

Archived

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

  • 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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

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

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

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

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

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

    4. - 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.

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

  • 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

    • catnapt
      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
      @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
      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
      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.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? 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.