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LynnR

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LynnR Explorer

How long did it take to get diagnosed with celiac disease? How many doctors did it take?

For me -

It took 7 1/2 years & 36 doctors.


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darlindeb25 Collaborator
:( i went to doctors for 20 yrs and never was diagnosed, not with celiacs anyways----i had been told spastic colon, irritable bowel, too much stress, nervous stomach--once i was told i was just getting the flu over and over--panic attacks, agoraphobia, anticipatory anxiety---ulcers once :angry: ----everything but celiacs---i went gluten-free when my sister was diagnosed celiacs--i dont need a doctor to say i am celiac or at least gluten intolerant ;)--i know i will never have gluten again--the panic is almost non existant now--no more meds for pani was taking 40mg of paxil when i went gluten-free and i weaned myself off of them---sooooooooooo--here i am--gluten free ans so thankful--its like i am a new person :D deb
flagbabyds Collaborator

It took me three months starving to death in the hospital for the million soctors i saw to finally realiise it

MySuicidalTurtle Enthusiast

Hmmm, 18 years of being told to take fiber or it was all in my head until I became very ill and moved down South. . .then my new doctor had a hunch and drew blood.

tarnalberry Community Regular

after I first experienced symptoms? probably a year.

after I first went to my GP? 4 weeks (test results took forever)

but I'm lucky, went in asking about celiac disease, and have a fabulous doctor

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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