Enterolab results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Wayne,
Well, I think that most of us expected gluten to show a positive result, so that result was as expected, but the casein test result is kind of a surprise. I'm sure that you're right about the lactose, because anyone who has intestinal inflammation, will automatically be unable to properly digest lactose, (until the inflammation is under control). That test result is good news, though, because it will expand your menu options considerably, and after your gut heals, even the lactose problem will go away.
The bad news is the DQ8 celiac gene, and more than that, the fact that you have double DQ3 genes. That means that you may have other food intolerances, and/or you might be more sensitive than many/most of us, to even the slightest traces of gluten.
Thanks for posting the results. Is it OK for me to add these to our compiled database of test results?
Tex
Well, I think that most of us expected gluten to show a positive result, so that result was as expected, but the casein test result is kind of a surprise. I'm sure that you're right about the lactose, because anyone who has intestinal inflammation, will automatically be unable to properly digest lactose, (until the inflammation is under control). That test result is good news, though, because it will expand your menu options considerably, and after your gut heals, even the lactose problem will go away.
The bad news is the DQ8 celiac gene, and more than that, the fact that you have double DQ3 genes. That means that you may have other food intolerances, and/or you might be more sensitive than many/most of us, to even the slightest traces of gluten.
Thanks for posting the results. Is it OK for me to add these to our compiled database of test results?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Whoa! I didn't even notice the fecal fat result. 
Yes, that's a very high result. You have a heck of a lot of small intestinal damage. I was thinking that you might have had an upper endoscopy exam to check for villus damage in the small intestine, and the results were negative, but maybe I'm thinking of someone else. Based on your fecal fat score, there is a significant chance that you have celiac disease, but of course, the treatment is the same, (the GF diet), so whether or not you want to pursue a celiac diagnosis, is your call. A celiac diagnosis would certainly make it easier to convince your GI doc that you need to follow a GF diet, though.
Unfortunately, not much is known about the specifics of a double DQ gene status. All we know is that people with double DQ genes tend to have more food intolerances, and greater sensitivity, (and often, more intestinal damage, or slower healing), than the rest of us. Some of the DQ3 category genes predispose to neurological issues, but not the ones that you have.
Thanks, I'll add your results to the list.
Tex
Yes, that's a very high result. You have a heck of a lot of small intestinal damage. I was thinking that you might have had an upper endoscopy exam to check for villus damage in the small intestine, and the results were negative, but maybe I'm thinking of someone else. Based on your fecal fat score, there is a significant chance that you have celiac disease, but of course, the treatment is the same, (the GF diet), so whether or not you want to pursue a celiac diagnosis, is your call. A celiac diagnosis would certainly make it easier to convince your GI doc that you need to follow a GF diet, though.Unfortunately, not much is known about the specifics of a double DQ gene status. All we know is that people with double DQ genes tend to have more food intolerances, and greater sensitivity, (and often, more intestinal damage, or slower healing), than the rest of us. Some of the DQ3 category genes predispose to neurological issues, but not the ones that you have.
Thanks, I'll add your results to the list.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Wayne
hope you are not too overwhelmed by the results, at least now you can figure out ingredients and meals etc.
as most of us have found post chronic D, (and diagnosis) it does take time for the gut to heal from the inflammation
our systems are quite fragile and super sensitive. the good news is that you have the information and the support to get better.
hope you hear back from the Uva soon
take care
hope you are not too overwhelmed by the results, at least now you can figure out ingredients and meals etc.
as most of us have found post chronic D, (and diagnosis) it does take time for the gut to heal from the inflammation
our systems are quite fragile and super sensitive. the good news is that you have the information and the support to get better.
hope you hear back from the Uva soon
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Maybe it just wasn't fully developed in 2008. Celac disease is a time-dependent process.
The fecal fat test checks for the amount of fat in the stool. Anyone with a significant malabsorption problem will have higher than normal amounts of fat in the stool samples, and a level as high as yours, indicates a lot of malabsorption. This can sometimes be due to issues with pancreatic function, but with a positive gliadin antibody result, and a positive tissue transglutaminase antibody result, the usual cause is damage to the villi of the small intestine, because of gluten sensitivity. Significant villus damage is almost always due to gluten, but it can also be caused by casein. In your case, though, casein damage would be ruled out by your negative casein result. As far as I'm aware, the fecal fat test is quite reliable. I've never seen anyone dispute the findings of that test. I would think that even mainstream docs would accept it.
Tex
The fecal fat test checks for the amount of fat in the stool. Anyone with a significant malabsorption problem will have higher than normal amounts of fat in the stool samples, and a level as high as yours, indicates a lot of malabsorption. This can sometimes be due to issues with pancreatic function, but with a positive gliadin antibody result, and a positive tissue transglutaminase antibody result, the usual cause is damage to the villi of the small intestine, because of gluten sensitivity. Significant villus damage is almost always due to gluten, but it can also be caused by casein. In your case, though, casein damage would be ruled out by your negative casein result. As far as I'm aware, the fecal fat test is quite reliable. I've never seen anyone dispute the findings of that test. I would think that even mainstream docs would accept it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I don't understand why he would make such an outrageous statement, because with a celiac gene, you can develop celiac disease at any time, at any stage of life. That's like saying that you can't develop Crohn's disease next year, simply because you show no sign of it now. That's ludicrous. Why do doctors make such dumb statements, when they have nothing to gain by doing so?
Tex
Not offhand, but I don't know very many celiacs. I have no doubt that if you were to post that question on a celiac board, you would get plenty of affirming responses, because everyone has to go through certain stages with the disease, before they reach a "diagosable" level of damage, and the last stage is both positive serology, and positive endoscopy results. The clinical symptoms might seem to start overnight, but the official diagnostic markers take years to develop. Sometimes the symptoms begin to present early in the process, and in some cases they don't present until the disease has already "matured".Wayne wrote:Do you know of anyone who initially had a negative biopsy like me and later had a positive one?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Interestingly, one of my closests friends who is also my naturopath, was diagnosed as celiac via blood test in 1999
she adopted GF/YF/LF diet for 3 years.
she then started eating wheat and gluten again and they retested her and she wasnt celiac.
she is having a few digestion issues which she always thought was IBS, based on our learnings via this site she is wondering if she has onset of MC given the gluten situation
i will acknowledge that since that time that testing procedures have advanced and results are more reliable.
the main thing now is listening to your body and how it reacts to the foods.
she adopted GF/YF/LF diet for 3 years.
she then started eating wheat and gluten again and they retested her and she wasnt celiac.
she is having a few digestion issues which she always thought was IBS, based on our learnings via this site she is wondering if she has onset of MC given the gluten situation
i will acknowledge that since that time that testing procedures have advanced and results are more reliable.
the main thing now is listening to your body and how it reacts to the foods.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
That part of the report disqualified you from a celiac diagnosis, at the time, (but that certainly wouldn't disqualify you from being a candidate in the future). Everything else noted in the report is consistent with gluten sensitivity, (and yes, it's also consistent with the early stages of celiac disease). You definitely had some clear evidence of inflammation, in your duodenum.The villous architecture is orderly and maintained and is without evidence of blunting.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wayne,
I just had both an endoscopy and colonoscopy done today to rule out celiac. I had a positive transglutaminase IgA, and endomysial blood tests. These tests are specifically for celiac sprue. When I had my endoscopy today the doc said my intestines showed no signs of inflammation, everything "looked good, looked normal". I think it is possible to have a negative biopsy if you are in the early stages of celiac and they just happen to get a biopsy from a part of the villi that are not damaged. Your endoscopy was 2 years ago and a lot can change in that amount of time. The first colonoscopy I had was 5 yrs ago and all it showed was MC. My GI said MC and CS seem to go hand in hand. Although the biopsy is to confirm (or not) the diagnosis of celiac, the doc did say I was definitely sensitive to glutens.
I can't wait to get my results from enterolab. I am hoping casein won't be a problem for me. Most people with MC or CS are lactose intolerant because the enzymes needed to breakdown the lactose are produced by the same villi that are being damaged by glutens. Once the gut begins to heal on a GF diet, we should be able to eventually have dairy again (if not casein sensitive).
Gabes,
I thought that celiac couldn't be confirmed with just the blood tests. I thought there had to be a biopsy to confirm the blood tests. I am wondering if your friend didn't have enough glutens in her system the second time around.
Romanita
I just had both an endoscopy and colonoscopy done today to rule out celiac. I had a positive transglutaminase IgA, and endomysial blood tests. These tests are specifically for celiac sprue. When I had my endoscopy today the doc said my intestines showed no signs of inflammation, everything "looked good, looked normal". I think it is possible to have a negative biopsy if you are in the early stages of celiac and they just happen to get a biopsy from a part of the villi that are not damaged. Your endoscopy was 2 years ago and a lot can change in that amount of time. The first colonoscopy I had was 5 yrs ago and all it showed was MC. My GI said MC and CS seem to go hand in hand. Although the biopsy is to confirm (or not) the diagnosis of celiac, the doc did say I was definitely sensitive to glutens.
I can't wait to get my results from enterolab. I am hoping casein won't be a problem for me. Most people with MC or CS are lactose intolerant because the enzymes needed to breakdown the lactose are produced by the same villi that are being damaged by glutens. Once the gut begins to heal on a GF diet, we should be able to eventually have dairy again (if not casein sensitive).
Gabes,
I thought that celiac couldn't be confirmed with just the blood tests. I thought there had to be a biopsy to confirm the blood tests. I am wondering if your friend didn't have enough glutens in her system the second time around.
Romanita
I can do ALL THINGS through Christ who strengthens me!!!!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
in Australia the GP's send you for the blood test. If you have a positive result they will refer to you a GI for scope confirmation.
A doctor will only encourage a gluten free diet if you have a positive result to this test
I had this arguement with a GP about 14 months ago. their belief is unless you are celiac there is no documented health benefit for following a GF diet. I tried to explain to her that i know i can not tolerate gluten. I had been eating GF for 9 years of more, and my digestion, wellbeing, sleep patterns etc were drastically better if I avoided Gluten. If i did eat gluten i had very noticeable symptoms to the extent that if i ate a meals with gluten any more than 3 - 4 times in a row i would vomit as i could not digest it
at that stage i was not interested in a medical reason as I had figured out that eating minimal gluten, yeast and lactose was the best diet plan for me.
the clincher of her inadequacies was she even stated that she found it difficult to accept the findings of a surgeons report from 1995 stating that i had no ligaments holding my bowel in place and that the small bowel was considerably damaged by bowel adhesions. She wanted to refer me to a GI for a laproscope to confirm that diagnosis.
it was at the point i walked out and never went back -
A doctor will only encourage a gluten free diet if you have a positive result to this test
I had this arguement with a GP about 14 months ago. their belief is unless you are celiac there is no documented health benefit for following a GF diet. I tried to explain to her that i know i can not tolerate gluten. I had been eating GF for 9 years of more, and my digestion, wellbeing, sleep patterns etc were drastically better if I avoided Gluten. If i did eat gluten i had very noticeable symptoms to the extent that if i ate a meals with gluten any more than 3 - 4 times in a row i would vomit as i could not digest it
at that stage i was not interested in a medical reason as I had figured out that eating minimal gluten, yeast and lactose was the best diet plan for me.
the clincher of her inadequacies was she even stated that she found it difficult to accept the findings of a surgeons report from 1995 stating that i had no ligaments holding my bowel in place and that the small bowel was considerably damaged by bowel adhesions. She wanted to refer me to a GI for a laproscope to confirm that diagnosis.
it was at the point i walked out and never went back -
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama