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

By Mballerina
in Coping with Celiac Disease

Recommended Posts

Mballerina Explorer
Mballerina
Posted

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
burdee
Posted

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
tarnalberry
Posted

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
Mballerina
Posted
  • Author

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
tarnalberry
Posted
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
wclemens
Posted

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
flagbabyds
Posted

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
stef-the-kicking-cuty
Posted

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
plantime
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,743
    • Most Online (within 30 mins)
      7,748
    MistyMoon
    Newest Member
    MistyMoon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Possible celiac - need advice

      By Scott Adams · Posted

      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or not??

      By Scott Adams · Posted

      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      How Come Gluten Didnt Bother Me In Italy

      By Scott Adams · Posted

      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.