Hi everyone!
I replied to my own message so you will find what I wrote back to you all there! OOPS!!!!!!!
I did think of a question. What are some things I need to do soon before there is intestinal damage or an increase chance of developing another auto immune disorder? Dr Fine's fecal test?
Thanks again.........
Shelly
P.S. I'm learning to navigate around here, hang tight! Whew! :)
Thank you!!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Shelly,
Getting the inflammation under control ASAP is probably the best way to minimize long-term risks. Some here feel that if one is gluten sensitive, then gluten needs to be removed from the diet in order to accomplish that goal. IOW, there is some concern that certain meds may only mask the symptoms, and not actually prevent further risk of damage.
Theoretically, though, (and this is just my opinion), since the meds normally used for this type of treatment are proven inflammation suppressors, they should suffice, (provided that they do indeed bring an end to the symptoms). As you probably already realize, the biggest risk with meds is the tendency to cause other problems, especially in individuals with compromised immune systems, (which probably applies to most/all of us), so that eventually additional meds may be required, etc., etc. That said, many here are taking maintenance doses of various meds without any obvious problems.
Yes, a stool test with Enterolab is the most reliable, (i. e., most sensitive), way to determine gluten sensitivity, unless, of course, you meet the criteria for a positive result from a classic celiac blood test. Though many of us here are highly gluten sensitive, virtually none of us tested positive for celiac sprue.
Tex
P S You seem to be doing just fine on the navagation. Anytime you have any questions about the way anything works around here, please don't hesitate to ask. Some things are obvious, and others are not. This site has a lot of bells and whistles - some for utility, and some just for fun.
Getting the inflammation under control ASAP is probably the best way to minimize long-term risks. Some here feel that if one is gluten sensitive, then gluten needs to be removed from the diet in order to accomplish that goal. IOW, there is some concern that certain meds may only mask the symptoms, and not actually prevent further risk of damage.
Theoretically, though, (and this is just my opinion), since the meds normally used for this type of treatment are proven inflammation suppressors, they should suffice, (provided that they do indeed bring an end to the symptoms). As you probably already realize, the biggest risk with meds is the tendency to cause other problems, especially in individuals with compromised immune systems, (which probably applies to most/all of us), so that eventually additional meds may be required, etc., etc. That said, many here are taking maintenance doses of various meds without any obvious problems.
Yes, a stool test with Enterolab is the most reliable, (i. e., most sensitive), way to determine gluten sensitivity, unless, of course, you meet the criteria for a positive result from a classic celiac blood test. Though many of us here are highly gluten sensitive, virtually none of us tested positive for celiac sprue.
Tex
P S You seem to be doing just fine on the navagation. Anytime you have any questions about the way anything works around here, please don't hesitate to ask. Some things are obvious, and others are not. This site has a lot of bells and whistles - some for utility, and some just for fun.
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.
Shelly,
One thing about Dr. Fine's/Enterolab's stool testing is that one doesn't have to still be eating gluten for them to work most of the time, unlike the other tests.
This buys you some time to actually try leaving off gluten to see if you notice anything different. With your reported symptoms here, I'm not quite sure what to expect in terms of what you'd notice early on.
It could be, though, that even before you find all the hidden, tiny amounts, that just leaving off the biggies like bread, baked goods, wheat pasta, breaded foods, etc., that are obvious would get you off to a good enough start that you'd be motivated to continue the learning curve. It's very motivating, and the positive results that I was fortunate enough to have with that were what actually motivated me to do the stool tests, that and the good things I'd heard about the tests from other patients.
This group has had people who've figured out their allergens by elimination diets, but knowing myself the way I do, I figured I'd rationalize my way out of the truth if I didn't have that piece of paper in front of me, so after being sure I was gluten sensitive, I did that test along with the gluten. It was all in a big panel with fecal fat test (shows malabsorption damage), gluten antibody, tissue antibody, dairy antibody, and I think the gene tests are nice to have, but if you can't do them all at once, the genes will always be there later.
I'm glad I got the gene test from Enterolab, because the other highly regarded labs for blood testing don't give the so-called "non-celiac" genes that are also associated with gluten sensitivity, particularly the HDL DQ genes associated with M.C. other than the big two, DQ 2, and DQ 8.
If you want to get a jump start on the dairy after sending in your specimen, you can begin the dairy removal then, and that way, when the dairy results come back, you'll be that much ahead. If it comes back negative, you can always begin eating dairy again.
What I did was to wait a couple of months to do the yeast and eggs, but if you can swing the $$$ doing it all at one time, that does give you a bit of a fast start, and it cuts down on the no. of specimens you have to collect as well.
In actuality, if I'd invested some serious time observing my symptoms which were then intermittent, I should've been sure that it was the eggs causing the breakthroughs. Even after finding and testing positive for gluten, I still was in total disbelief that I could have several food sensitivites.
My hat is off to the folks who did this totally by elimination!
Like Tex, I believe the most important thing for you to do now is to get that inflammation down, pronto! The gluten just might get rid of a whooole lot of it, and sometimes it happens quickly and otherwise enough to assure you that you'll be better off the stuff.
Please don't let the diet overwhelm you. Have you found the national groups, Celiac Society of America or Gluten Intolerance Group as yet.
On those sites, there are contact numbers for the national groups, and the individual local groups, at least their used to be.
They have a sort of slogan in those organizations which is "Celiacs helping celiacs." Part of this is often having a more experienced celiac to show you the ropes.
Perhaps you could be assigned a "buddy" who could go with you to dinner and show you what to order and how at the restaurant, and then the two of you could go shopping (label reading) together.
I think this could be alot of fun for you, and a real eye opener.
One very positive outcome of having to read so many labels and learn so much about food is that just the awareness of what goes into things we eat, has made many of us become more conscious of other dietary changes we needed to make, so, in a way, we've become much healthier than we'd have been without getting this diagnosis.
I think that your being a healthcare professional will make this journey especially meaningful to you in the long run.
Yours, Luce
One thing about Dr. Fine's/Enterolab's stool testing is that one doesn't have to still be eating gluten for them to work most of the time, unlike the other tests.
This buys you some time to actually try leaving off gluten to see if you notice anything different. With your reported symptoms here, I'm not quite sure what to expect in terms of what you'd notice early on.
It could be, though, that even before you find all the hidden, tiny amounts, that just leaving off the biggies like bread, baked goods, wheat pasta, breaded foods, etc., that are obvious would get you off to a good enough start that you'd be motivated to continue the learning curve. It's very motivating, and the positive results that I was fortunate enough to have with that were what actually motivated me to do the stool tests, that and the good things I'd heard about the tests from other patients.
This group has had people who've figured out their allergens by elimination diets, but knowing myself the way I do, I figured I'd rationalize my way out of the truth if I didn't have that piece of paper in front of me, so after being sure I was gluten sensitive, I did that test along with the gluten. It was all in a big panel with fecal fat test (shows malabsorption damage), gluten antibody, tissue antibody, dairy antibody, and I think the gene tests are nice to have, but if you can't do them all at once, the genes will always be there later.
I'm glad I got the gene test from Enterolab, because the other highly regarded labs for blood testing don't give the so-called "non-celiac" genes that are also associated with gluten sensitivity, particularly the HDL DQ genes associated with M.C. other than the big two, DQ 2, and DQ 8.
If you want to get a jump start on the dairy after sending in your specimen, you can begin the dairy removal then, and that way, when the dairy results come back, you'll be that much ahead. If it comes back negative, you can always begin eating dairy again.
What I did was to wait a couple of months to do the yeast and eggs, but if you can swing the $$$ doing it all at one time, that does give you a bit of a fast start, and it cuts down on the no. of specimens you have to collect as well.
In actuality, if I'd invested some serious time observing my symptoms which were then intermittent, I should've been sure that it was the eggs causing the breakthroughs. Even after finding and testing positive for gluten, I still was in total disbelief that I could have several food sensitivites.
My hat is off to the folks who did this totally by elimination!
Like Tex, I believe the most important thing for you to do now is to get that inflammation down, pronto! The gluten just might get rid of a whooole lot of it, and sometimes it happens quickly and otherwise enough to assure you that you'll be better off the stuff.
Please don't let the diet overwhelm you. Have you found the national groups, Celiac Society of America or Gluten Intolerance Group as yet.
On those sites, there are contact numbers for the national groups, and the individual local groups, at least their used to be.
They have a sort of slogan in those organizations which is "Celiacs helping celiacs." Part of this is often having a more experienced celiac to show you the ropes.
Perhaps you could be assigned a "buddy" who could go with you to dinner and show you what to order and how at the restaurant, and then the two of you could go shopping (label reading) together.
I think this could be alot of fun for you, and a real eye opener.
One very positive outcome of having to read so many labels and learn so much about food is that just the awareness of what goes into things we eat, has made many of us become more conscious of other dietary changes we needed to make, so, in a way, we've become much healthier than we'd have been without getting this diagnosis.
I think that your being a healthcare professional will make this journey especially meaningful to you in the long run.
Yours, Luce
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
I never got tested. But by elimination found I feel better on gluten. Because I already had the endo, and a year later (after the surgery) found out I had MC, and everyone here was talking about the autoimmune connections with gluten sensitivity, I tried it as preventative medicine. And was pleasantly suprised to find that my aches and pains began to subside as well. So even though I don't have celiac, and I haven't had a test showing I'm gluten sensitive, I found I feel better without. Some people need proof scientifically though too to make the change in diet, so testing is important and Dr. Fine's tests sound like a great place to start.
Katy
Katy