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Do I Need More Testing Done?


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8 replies to this topic

#1 wwebby

 
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Posted 11 April 2004 - 08:03 PM

Hi everyone, I'm looking for some advice. I've had some tests done but not a full celiac panel. Should I have the full panel done, or, in your experience, should my results so far indicate Celiac? Thanks.

Enterolab results (stool):
Positive for IgA gliadin
Positive for tissue transglutaminase
Positive for celiac gene
(sorry, i don't have the exact numbers...they're on the other computer, but I do recall the numbers were very strong positive according to the stool test)

York Labs (blood fingerprick):
Positve IgG gliadin

I'm asking because I've had trouble complying with a gluten free diet...I guess because I ordered these tests myself, I'm feeling like it's not "real" or I'm a hypochondriac. Should I have other blood tests done?

I've seen that a full celiac disease panel tests for blood TtG, EMA, and reticulin antibodies in addition to the gliadin antibodies. What do you think? I haven't had these other assays done. Should I just assume that I have celiac disease? Or should I consider the tests I've already had done as possible indicators, but not fully confirmational (? is that the word?)? Thanks.
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[FONT=Arial][SIZE=7][COLOR=purple]"Feel the Fear and Do It Anyway!"

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#2 plantime

 
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Posted 12 April 2004 - 04:34 AM

If your Enterolab panel came back positive for everything, then I recommend starting a gluten-free diet immediately. You would not test a strong positive if you were not ill. You also would not have ordered the tests if you were not ill. Try the gluten-free diet for 6 weeks. You have nothing to lose but poor health.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#3 cheri

 
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Posted 12 April 2004 - 04:54 AM

HI, I recently had my family physician run a celiac panel on me to see if I had celiac. It came back a weak positive result 20-30 gliadin ab (igg) 21 (<20), gliadin ab (Iga) 10 (<20). I have been doing alot a reseach the past week and still confused on what these results mean. Especially since my symptoms do not include weight loss. Mine are recurring abdominal bloating, pain, diarrhea, constipation, bone pain, fatigue, fatigue, mood swings, irritabilable, ringing in my ears. I was diagnosed with IBS about 7 years ago. Recently read and article that promted me to have the blood test done. No weightloss and more of a weightgain, I exercise daily and still feel tired alot. Dr. referred me back to my GI to have a biopsy but can't get in till June 1st. Till then I feel like I'm in limbo. I read about this Enterolab and was wounder how to get in touch with them or web site would be great. Thanks!!
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#4 Guest_gillian502_*

 
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Posted 12 April 2004 - 05:32 AM

I would always recommend a blood and biopsy diagnosis above all else, simply because the sad fact is many doctors will not accept any other type of diagnosis as being real. I would say to anyone who can tolerate their symptoms long enough to hang in there and wait for a blood panel and biopsy before going gluten free. Then if all else fails you can always go on the diet anyway, nothing stopping you. It's just better to not have to argue with doctors for years down the line whenever you "claim" to have celiac disease and they don't wanna hear it without an official medical diagnosis. (And it saves you from the hell of going back to gluten later after being gluten-free, just so you can finally get the testing done after all.)
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#5 tarnalberry

 
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Posted 12 April 2004 - 08:30 AM

I had a similar problem - mostly because my celiac panel (and it was the full blood test, though not done by Prometheus) came back inconclusive. But I had already started a gluten-free diet, and didn't really want a biopsy. I've discovered, by dietary test, that I react to gluten. That's a good enough answer for me. No, I don't have a formal diagnosis, which can be an inconvenience in many ways, but my dietary challenges have left me quite sure that I fell awfully darn "not-right" when I have gluten.

You have to decide how much of an answer you need for yourself. (And if a gluten-free diet even helps you feel better.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#6 KayJay

 
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Posted 12 April 2004 - 12:06 PM

Cheri,
I think all of those are sympoms of celiac. Those are symptoms that I have I am guessing that your dr. has tested you for other conditions like lupus, thyroid, things like that. Those symptoms could be anything, but if you have gone through test after test and you did test positive on your blood panel then I would say gluten-free is worth a try.
--My blood work came back neg. I had gone gluten-free and then back and so I think my test didn't work very well. I have spent so much money on test after test finding that nothing is wrong with me but I was still sick. So I did the enterolab test. My test came back positive and milk sensitive. I have been gluten-free for almost 2 months now and I feel so much better. I am only 25 and for the first time in 10 years I have hardly any pain in my joints, I have more energy, better mood... I thought I was falling apart and had 100 different things wrong with me so I was happy to find out that they were all connected :)
I hope you find out what you have, I know how hard it is to get test done and wait for the results. Hang in there,
Kayla
one more thing I also gained 30 pounds in about a year. I also exercise regularly and eat very healthy weight gain is a symptom although in my experience drs didn't think it was a big deal. I always had a hard time gaining weight when I was younger then out of nowhere I gained 30 pds. I have lost about 15 now and I think I like this weight that I am at. I don't look too skinny and I feel more better.
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#7 cheri

 
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Posted 13 April 2004 - 04:24 AM

Thanks, everyone for responding to my concerns, I guess the best thing to do is to continue to have gluten and go on gluten-free diet after I have my tests done. It seems so long but maybe then It will give me some answers if not then Maybe the gluten-free diet is something I want to be on to improve my overall health. It's just feels good to share this, people who do not have problems like this don't understand what you are feeling and going through. Thanks again!!!! cheri
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#8 wwebby

 
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Posted 13 April 2004 - 06:40 AM

Thanks everyone for your input. I did make an appointment with a gastroenterologist. I don't know what I'll get, but we'll see. I did find my actual numbers from Enterolab and to me, they seem quite high compared to what others have posted. Does that make a difference? Do higher numbers mean you have a worse case?

Fecal Antigliadin IgA 269 units (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 121 units (Normal Rnage <10 Units)
Microscopic Fecal Fat Score: 30 Units (Normal Range <300 Units)
Yeast Score: 135 Units (Normal Range <10 Units)
Milk Score: 108 Units (Normal Range <10 Units)
Egg Score: 108 Units (Normal Range <10 Units)

Does the Yeast, Milk, and Egg situation improve as your gut heals? Just curious. It's quite a limiting list. Is anyone else dealing with multiple sensitivities? Did any of them improve? Thanks.
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[FONT=Arial][SIZE=7][COLOR=purple]"Feel the Fear and Do It Anyway!"

#9 plantime

 
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Posted 13 April 2004 - 08:42 AM

It looks like your numbers are very high! For some people, the other food senstivities lessen, but for others they do not. Since my other food problems do not involve my gut, my list will always be limited. It gets easier to deal with.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25




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