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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)

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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

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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!

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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