I've been gluten-free since August 2003, and today my doctor called with my latest celiac panel blood results. Not only am I still positive, my levels have barely dropped at all. My Igg was always normal and still is, but my IgA was in the 30s back before the diet, and it still is. My Ttg (is that what it's called?) is still in the 40s as it always was. Everything is exactly the same. Nothing has improved. Every day I eat food I hate and stress about every morsel I put in my mouth and for what...this is like a bad joke. I have not a clue what these results mean or what I could possibly be doing wrong. I could have a pizza right now and follow that with a huge loaf of bread, and my results would be exactly the same, it makes no difference whatsoever.
I asked the doctor if this means I have refractory sprue, and he paused and took a deep breath and simply said, "I think your antibody levels should have come down by now." It was a sobering moment, because basically, I've done all I know how to do and I am not beating this disease. I thought my weight gain and the fact I was at least a little stronger was a good sign, but apparently it all means nothing. Ugh. I don't know what else to do.
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Depressed Over Blood Work Results
Started by
Guest_gillian502_*
, Mar 29 2004 11:38 AM
8 replies to this topic
#2
SteveW
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Posted 29 March 2004 - 03:41 PM
Sorry to hear that.
I recently got back my seconded test and while it was lower my Doc told me that I was still getting gluten from somewhere. Other than some enriched rice I was eating I can't think of anything that I was eating that could contain gluten.
I was pretty pissed when I left the office.
This is a very frustrating diet!
I really wish that we could buy a meal plan that's guaranteed by our heath care provider to be gluten-free and supplies us with all the nutrients we need. Like a MetRx shake but gluten-free.It would take most of the guess work out of all of this. At least for the first few months when were trying to get back on our feet.
What are you eating? Maybe one of us could see somthing.
I recently got back my seconded test and while it was lower my Doc told me that I was still getting gluten from somewhere. Other than some enriched rice I was eating I can't think of anything that I was eating that could contain gluten.
I was pretty pissed when I left the office.
This is a very frustrating diet!
I really wish that we could buy a meal plan that's guaranteed by our heath care provider to be gluten-free and supplies us with all the nutrients we need. Like a MetRx shake but gluten-free.It would take most of the guess work out of all of this. At least for the first few months when were trying to get back on our feet.
What are you eating? Maybe one of us could see somthing.
#3
GFdoc
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Posted 29 March 2004 - 04:21 PM
my antigliadinIgA was also still elevated (in the 50s) 6 months into the gluten-free diet and the advice given to me was not to worry.. the levels can take a full year to drop (this info from the celiac program from the univ. of Chicago) I will get retested again in another 6 months and hopefully my levels will be down alot more!
Sara gluten-free since 9/03
#4
YankeeDB
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Posted 30 March 2004 - 09:20 AM
I'm wondering if things other than gluten can cause the same reaction. Here is a quote from the Enterolab web site about their yeast, eggs, and dairy tests:
What about yeast sensitivity?
Although we know less about yeast sensitivity than gluten sensitivty (because the former has been identified and studied for a shorter period of time), we now know that it too can be associated with an immune reaction that damages the intestine and perhaps other tissues in the body. Yeast sensitivity is the only reaction identified to be present in people with a devastating intestinal inflammatory disease called Crohn's disease. Through research, we at EnteroLab have identified coexisting yeast sensitivity in at least three-quarters of those we find to be gluten sensitive. This is not surprising since many gluten containing foods also contain yeast (such as brewer's and baker's yeast). We also find that some people get more symptom relief from a gluten-free diet when it is also yeast-free.
What about milk and/or egg sensitivity?
Since the 1960's, research has shown that people who are immunologically sensitive to gluten have a higher than average chance of being sensitive to other dietary proteins, especially to those in milk and eggs. This can be detected by antibodies to these dietary proteins, and our patented stool antibody tests can reveal these to be present before they can be detected in blood. Sensitivity of the immune system to milk and egg proteins can cause intestinal syndromes and damage mimicking that caused by gluten and celiac sprue. Furthermore, recent research has linked antibodies to milk proteins to the devlopment of eczema, diabetes, multiple sclerosis, autism, and other immunologic syndromes.
#5
debmidge
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Posted 31 March 2004 - 03:27 AM
To all & especially Gillian:
I recall when going thru the Entrolab site, in the area of why they rely on stool sample to provide a good test for the anti bodies...Entrolab, in their own site, states that you could still have the anti bodies for 2 years after you've gone gluten-free. That's why, they say, the stool sample is a good test for celiac disease. I don't know how to cut & paste (I am not computer literate) and put their quote in, so I recommend that if you need/want to see it, go to that site.
Debmidge
I recall when going thru the Entrolab site, in the area of why they rely on stool sample to provide a good test for the anti bodies...Entrolab, in their own site, states that you could still have the anti bodies for 2 years after you've gone gluten-free. That's why, they say, the stool sample is a good test for celiac disease. I don't know how to cut & paste (I am not computer literate) and put their quote in, so I recommend that if you need/want to see it, go to that site.
Debmidge
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 2006It 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
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 2006It 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
#6
Josephine
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Posted 31 March 2004 - 04:27 AM
Debmidge,
Did you see my reply to you in, "Several Years of Illness"?
Regards,
Josephine
Did you see my reply to you in, "Several Years of Illness"?
Regards,
Josephine
#7
Guest_gillian502_*
Guest_gillian502_*
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Posted 31 March 2004 - 11:33 AM
Thank you all so much, your replies made me feel ALOT better! I hate the fact that there are more people than me suffering trying to get their antibodies down, but I am also relieved to hear that I'm not the only one out there with positive antibodies after all these months gluten-free. It also worries me to still be somewhat symptomatic after all this time, but all I can do is wait and see what I am told after the 12th when I have my colonoscopy and a second endoscopy. I hope at least my villi have healed, that would really be the good news I need right now.
Josephine,
I'll check out your message now, thanks!
Josephine,
I'll check out your message now, thanks!
#8
Guest_aramgard_*
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Posted 31 March 2004 - 11:45 AM
Also, if there is extensive damage in your intestine, it may take more than 2 years to recover. I have been gluten free for 3 years and my dermatitis is just now beginning to recover. I've been having fewer and fewer rashes and for the first time since I was 14 years old have been rash free for about 3 weeks. I am now nearly 70 years old. My intestine is taking a long time to heal, because it had a long time to be damaged and the antibodies are taking their time getting out of my system. Shirley
#9
Guest_gillian502_*
Guest_gillian502_*
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Posted 31 March 2004 - 05:40 PM
Shirley,
Yes I was wondering about the damaged intestine issue--I was told my intestines were "markedly damaged" and my fear is, if the antibodies are still present, does that mean my intestines are still being actively destroyed? I've gained weight despite the the antibodies not disapearing, I figure that must be a sign of absorbsion beginning to get better. It's just confusing as to why these antibodies aren't becoming lower, and the doctor sounded like they should be completely gone by now.
Yes I was wondering about the damaged intestine issue--I was told my intestines were "markedly damaged" and my fear is, if the antibodies are still present, does that mean my intestines are still being actively destroyed? I've gained weight despite the the antibodies not disapearing, I figure that must be a sign of absorbsion beginning to get better. It's just confusing as to why these antibodies aren't becoming lower, and the doctor sounded like they should be completely gone by now.
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