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Pre-Diagnosis

Aries

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Aries Newbie
Aries
Posted

Hello everyone~ I'm new here and am looking for some support because I dont know anyone who has Celiac Disease. I have been ramping up my gluten intake since April 19th for a blood test to follow in 8 weeks. I have been eating 4 slices of wheat bread every day. I have digestive symptoms, such as, bloating, constipation, gas, abdominal pain, sometimes undigested food in stool and sometimes stool that floats. Sometimes the digestive discomfort is worse and sometimes it's not so bad....it's the 'not so bad' days that has me doubting I'll have a diagnosis of Celiac Disease. Today seems to be a bad day while yesterday was not bad at all. Does anyone else out there have good and bad days while in the pre-diagnosis stage?

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jerseyangel Proficient
jerseyangel
Posted

Hello everyone~ I'm new here and am looking for some support because I dont know anyone who has Celiac Disease. I have been ramping up my gluten intake since April 19th for a blood test to follow in 8 weeks. I have been eating 4 slices of wheat bread every day. I have digestive symptoms, such as, bloating, constipation, gas, abdominal pain, sometimes undigested food in stool and sometimes stool that floats. Sometimes the digestive discomfort is worse and sometimes it's not so bad....it's the 'not so bad' days that has me doubting I'll have a diagnosis of Celiac Disease. Today seems to be a bad day while yesterday was not bad at all. Does anyone else out there have good and bad days while in the pre-diagnosis stage?

Hi Aries, welcome to the board :)

I was misdiagnosed for many years--I had days, and sometimes longer periods of time, where I felt better than usual. The fact that you have some good days while loading up on gluten doesn't necessarily mean that that you're not Celiac/gluten intolerant. While it's different for everyone, once off gluten completely (after testing), you may find that there were symptoms that you are not aware of now, that go away.

Definitely stay the course with your gluten challenge and let us know how you do with the blood work. Then, even if you don't test positive and feel better off gluten, by all means give the diet a try and let us know how we can help.

sa1937 Community Regular
sa1937
Posted

Sometimes the digestive discomfort is worse and sometimes it's not so bad....it's the 'not so bad' days that has me doubting I'll have a diagnosis of Celiac Disease. Today seems to be a bad day while yesterday was not bad at all. Does anyone else out there have good and bad days while in the pre-diagnosis stage?

Welcome, Aries!

I had my initial celiac panel done in Dec., which turned out to be positive. And I also had good days/bad days between then and my EGD on April 9. The month of Jan. wasn't too bad but Feb. and March were. ph34r.gif I was consuming plenty of gluten as I didn't want to go through an invasive test for nothing. ohmy.gif My biopsy on April 9 was positive for celiac. It was actually a relief to find out and even though the biopsy results weren't available yet, I went gluten free that day.

Actually I still have good days/bad days. I feel pretty good today but didn't on Mon. or Tues. but felt fine on Sun. No rhyme or reason for it that I have yet figured out. This is a mysterious disease as we all react so differently to so many things.

Linkz Newbie
Linkz
Posted

What do posters mean when you say "MISDIAGNOSED"? Were you tested for celiac and it came back 'false negative'? The literature says it takes on average 11 years for diagnosis in America. Do they want us to believe that gastroenterologists with have decent IQs will not consider celiac when a patient complains for 11 years? Someone should fill in the gaps for me.

Linkz Newbie
Linkz
Posted

What do you mean when you say the test was positive?. Does it mean antibodies to Gliadin /self were present or were present in sufficient quantities? My Gliadin IgA came back 4.3. What should I make of this? I am ready to exhaust all the tests to rule out the remotest possibility of my having celiac. I have suffered the symptoms long enough and if I continue to listen to conventional doctors I may last another decade without a firm diagnosis. A formal diagnosis is often required because malabsorption, which a common symptom in celiac can only be treated with prescription injections of minerals and vitamins. Oral supplements will not work until the intestinal villi are sufficiently healed--a process that can take at least 6 months!

mushroom Proficient
mushroom
Posted

What do posters mean when you say "MISDIAGNOSED"? Were you tested for celiac and it came back 'false negative'? The literature says it takes on average 11 years for diagnosis in America. Do they want us to believe that gastroenterologists with have decent IQs will not consider celiac when a patient complains for 11 years? Someone should fill in the gaps for me.

Misdiagnosis usually means that the person doing the testing didn't even think to test for celiac disease. The usual misdiagnosis for celiac is IBS which we here call "I'm Basically Stumped" because it's such a garbage can diagnosis. But WHY is the bowel irritable, Doctor? There is also an incidence of about 20% false negatives on the blood testing, and the biopsy has about the same reliability because it depends on the skill of the doctor in recognizing which parts to biopsy, and in taking enough samples. And unfortunately, in the past, celiac has been one of the last diagnoses considered because it was thought to be "so rare." At least that's what the docs were taught in school. There has only in the last ten years or so been a greater awareness so if your doc graduated more than ten years ago and hasn't kept up, well.....

mushroom Proficient
mushroom
Posted

What do you mean when you say the test was positive?. Does it mean antibodies to Gliadin /self were present or were present in sufficient quantities? My Gliadin IgA came back 4.3. What should I make of this? I am ready to exhaust all the tests to rule out the remotest possibility of my having celiac. I have suffered the symptoms long enough and if I continue to listen to conventional doctors I may last another decade without a firm diagnosis. A formal diagnosis is often required because malabsorption, which a common symptom in celiac can only be treated with prescription injections of minerals and vitamins. Oral supplements will not work until the intestinal villi are sufficiently healed--a process that can take at least 6 months!

A positive result means that (in the blood) there were sufficient antibodies to meet the test threshold level (they have a normal range), and in the biopsy a positive means that damage to the small intestine was found indicative of celiac disease (usually atrophy of the villi).

Even without a positive diagnosis you can still give the gluten free diet a trial, and you can still have your doctor order blood testing for your nutrient levels and order prescription injections for deficiencies (that's what I did - I even told her what to check and which levels were too low!!!)

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Aries Newbie
Aries
Posted
  • Author

Thank you, Jerseyangel and sa1937! It's nice to have some reassurance from people who know what it's like to go through this. I will keep you all posted on my progress and diagnosis....June 14th can't get here soon enough.

sa1937 Community Regular
sa1937
Posted

Thank you, Jerseyangel and sa1937! It's nice to have some reassurance from people who know what it's like to go through this. I will keep you all posted on my progress and diagnosis....June 14th can't get here soon enough.

You're welcome, Aries! My memories are still very vivid so I know what you're going through. I could have gotten in for my EGD about 3 weeks earlier but obviously couldn't drive myself ph34r.gif so had to wait for a convenient time for my son and daughter-in-law to take me and they both work.

On a happy note, I felt so much better within 3 days after my EGD (I had the Big D) so you can go gluten free as soon as your EGD is done as you don't need to wait for the biopsy results.

Wishing you my best!!! biggrin.gif

  • 2 weeks later...
Aries Newbie
Aries
Posted
  • Author

Hi everyone, I just need some reassurance. I have 2 more full weeks in my gluten challenge but am considering asking if I can do my blood work sooner. My main concern is that I now have some pain on the right side of my back and my stomach hurts when I lay on my right or left side but not flat on my back. I also find myself with nausea (ovaries removed, no chance of being pregnant)in the morning, it goes away after I eat (even if I eat a whole wheat bagel) I've had an ultrasound of my liver, and gallbladder but they say my pancreas had suboptimal visualized due to gas, which I find odd since I had fasted for over 14 hours before my ultrasound. All other blood work has been normal. I'm worried this wont be Celiac but something worse.

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