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Possibly Celiacs Disease(?) And Bloodtests


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5 replies to this topic

#1 ihatethecircus

 
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Posted 01 March 2004 - 01:09 PM

Am new to this board and haven't been diagnosed. My problems started several months ago with severe acid reflux and nausea when I eat wheat products and anything with oats. I've had an endoscopy and upper GI. The only thing they could find was a small hiatal hernia. I just went to the doc to get full blood workup today and ironically a coworker just told me about her friend's recent celiac diagnosis. I saw a lot of similarities in my symptoms SO I called my doc to see if they could test me for this. I was told they would test for malnutrition which could be an indicator but that a biopsy was the only way to know for sure.
My question is this- if I'm not malnourished could I still have this? Basically, I need to know what to do next.
Any help is appreciated! Thanks so much!
Tonya
Whoopsie- think I put this in the wrong spot. I also put this in the coping section? Am foggy-headed. Sorry.:)
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#2 ihatethecircus

 
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Posted 01 March 2004 - 01:41 PM

Am new to this board and haven't been diagnosed. My problems started several months ago with severe acid reflux and nausea when I eat wheat products and anything with oats. I've had an endoscopy and upper GI. The only thing they could find was a small hiatal hernia. I just went to the doc to get full blood workup today and ironically a coworker just told me about her friend's recent celiac diagnosis. I saw a lot of similarities in my symptoms SO I called my doc to see if they could test me for this. I was told they would test for malnutrition which could be an indicator but that a biopsy was the only way to know for sure.
My question is this- if I'm not malnourished could I still have this? Basically, I need to know what to do next.
Any help is appreciated! Thanks so much!
Tonya
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#3 zippyten

 
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Posted 01 March 2004 - 01:53 PM

Tonya,
I'm sure you will get lots of replies to your questions from more experienced people than me, but just happened to see this & thought I'd let you know -- there is a whole panel of blood tests for celiac, and biopsy is not the only way to diagnose. Seems like doctors use it as the "gold standard" to confirm the diagnosis, but it's an invasive test, and you can probably find out if you have celiac first by having a reputable lab check the antibodies in your blood, and by seeing if the symptoms go away while on a gluten-free diet.

I've just found out myself, since my blood work showed celiac, that the biopsy does not always reveal intestinal damage, because the biopsies are done randomly in a scattered fashion, and if you don't have severe damage over long-term to your small intestine it might not show up -- which wouldn't mean you don't have it.

If your doctor does not know about these specific blood tests for celiac, I would suggest going to another one who does. This message board has loads of useful information, and there are also a few good books and websites out there if you want to do some research. Good luck.
Ellen
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#4 debmidge

 
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Posted 02 March 2004 - 03:38 PM

Can anyone tell me how long have doctors been using the current blood tests to test for gluten sensitivity or celiac disease?
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#5 Christina

 
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Posted 04 March 2004 - 08:34 AM

I just read about this in a magazine, Parents I think, it had an article called the enemy in the kitchen, I think or maybe it was the Pantry? Any way, it sounded eerily familiar in a lot of ways. I will tell you some information about my family first:

I am in my thirties and always have had digestion problems, (irritable bowel/spastic colen, reflux also) My mother has diabeties and Thyroid, but most importantly my children:
My oldest is anemic if not on iron pills, and as a baby she was having lots of trouble gaining weight and reaching milestones. She is fine now that she is older except for being lactose sensitive. My middle child seems fine, never had a problem except it did take her awhile to switch from formula to milk...needed soy milk until 3yrs or she would have diarreha. My baby is not doing so well. At nine months old she can barely sit up and only weighs 14 lbs. 6 oz. She doesn't crawl but rolls good. She is behind in size and milestones, and suffers from major reflux.

Does any of this sound like enough reason to be tested for celiac disease or gluten intolerance?? Or am I just over reacting? What do you recommend?

Any one who reads this please respond. :rolleyes:
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#6 seeking_wholeness

 
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Posted 04 March 2004 - 08:42 AM

Christina,

Oh, yes! Definitely have your children (and yourself) tested for celiac disease! If only one of your kids had trouble, it would still be worth it to investigate possible celiac disease, but since a whole cluster of family members has suspicious symptoms I (personally) think it's rather likely that celiac disease is the culprit.

It's great that articles like the one in Parents magazine are helping to raise awareness of celiac disease and prompting readers to pursue testing. I wish you and your family the best of luck during the diagnostic process!
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Sarah
gluten-free since November 1, 2003




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