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Charlotte,
Since you are a fellow DQ2, I wonder if you might benefit from celiac cross-reactivity testing performed by Cyrex labs. It was actually partially covered by my insurance. I tested extremely sensitive to sesame seeds, and I NEVER would have suspected. Turns out I was eating lots of sesame in hummus and GF crakers and chips.
Entocort is not as effective the 2nd time around :sad:
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I really don't see any point to doing another colonoscopy, if you had one only 2 years ago. Nothing will be changed, in 2 years. Obviously, your doctor wants to use you as a guinea pig, to learn more about MC. He would have to twist my arm pretty sharply to convince me to consent to another colonoscopy so soon, unless he were paying me for being a research subject.Charlotte wrote:I have no pain or cramping. My last Colonoscopy was 1/22/10 with a sigmoidoscopy on 7/16/10.
It sounds as though you're making satisfactory progress, (it's almost always tougher, for those of us with double DQ genes).
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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wonderwoman
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I have never been able to understand the results of the Enterolab testing. These are my results.
Charlotte (wonderwoman)
HLA-DQB1 Molecular analysis, Allele 1: 0202
HLA-DQB1 Molecular analysis, Allele 2: 0603
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6). The second gene predisposes to neurological disorders caused by gluten sensitivity.
I haven't eaten sesame seeds. I have been eating unsalted almonds that I put in the food processor and ground fine so they would be easier to digest.
Charlotte (wonderwoman)
HLA-DQB1 Molecular analysis, Allele 1: 0202
HLA-DQB1 Molecular analysis, Allele 2: 0603
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6). The second gene predisposes to neurological disorders caused by gluten sensitivity.
I haven't eaten sesame seeds. I have been eating unsalted almonds that I put in the food processor and ground fine so they would be easier to digest.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
You have two genes that predispose to gluten-sensitivity, (one of which predisposes to certain neurological issues connected with gluten-sensitivity). You don't have either of the classic celiac genes, though. As long as you avoid gluten, you shouldn't have any problem with gluten-connected neurological disorders.Charlotte wrote:I have never been able to understand the results of the Enterolab testing.
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.
Charlotte, I use to find that 2 Entocort would do the trick, but over the last year everything has just escalated and now I take the 3 plus Imodium as well just to have pencil thin poop. Glad you are seeing your GI. I mentioned the probiotic and I think its a matter of finding the right one and then just staying with for the haul.
Tex, thanks for your input and more importantly you are so right about "hope"; it's all we got some days. I am actually seeing the GI at Baylor tomorrow to discuss immune suppressants (at least I am)! I have put a little weight back on (98) but feel like crap. Just like Gloria, I have a lot of gas, some cramping, and some nausea every day. I no longer can pinpoint which food is bothering me and probably there are several now again, including one of two meats I eat. I have just persevered through the discomfort in order not to lose any more weight.
Gloria, taking the immune suppressants scare me as well, but I'm not in my 30's or 40's and want to enjoy what's left of life. I haven't been in a restaurant to eat coming up two years now. Not that that is so important, but that most of a social life is around food! I take my food a lot, but am tired of eating something cold and boring!
Love Ginny
Tex, thanks for your input and more importantly you are so right about "hope"; it's all we got some days. I am actually seeing the GI at Baylor tomorrow to discuss immune suppressants (at least I am)! I have put a little weight back on (98) but feel like crap. Just like Gloria, I have a lot of gas, some cramping, and some nausea every day. I no longer can pinpoint which food is bothering me and probably there are several now again, including one of two meats I eat. I have just persevered through the discomfort in order not to lose any more weight.
Gloria, taking the immune suppressants scare me as well, but I'm not in my 30's or 40's and want to enjoy what's left of life. I haven't been in a restaurant to eat coming up two years now. Not that that is so important, but that most of a social life is around food! I take my food a lot, but am tired of eating something cold and boring!
Love Ginny
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
So sorry of to hear of the ongoing troubles of some folks here, especially Gloria, Ginny and Wonderwoman. My heart goes out to you and I hope you can continue to keep the fight going.
One thing we never talk enough about here is the impact of mineral imbalances. I am no expert in the field, but there is heaps of information out there suggesting a range of health problems associated with metal toxicity. Just recently I was reading of someone suffering digestive problems and ulcers that was traced to titanium toxicity from teeth implants - apparently, sensitivity to titanium is rare but does occur!
May I suggest that at this stage you consider getting a full assessment of your current nutritional status - vitamins and minerals. That would include whatever blood tests your GP can do, but also hair analysis. Hair analysis is often more reliable than other means of testing as minerals tend to be excreted and held in the hair tissue, so it provides a good clue to what minerals your body has in excess, or is deficient in.
There are lots of places that do this analysis. Here is one I have used: http://www.interclinical.com.au/hairtissue.php. What is interesting about the reports from this firm is that they do give you a lot of information on ratios between minerals, which in many cases is more important than the absolute level.
Vitamin checks will also help you to determine if you need direct supplementation - for example, B12 injections - to make sure you are getting the nutrition you need.
One approach to consider is to get all the figures now so you have a baseline for your nutritional status, and then if you do go the imuran way, at least you will be able to see where it is helping and where you may still need to try something else.
Here is one place to start looking at the effects of mineral imbalances (though I am not saying I agree with everything these guys have to say!) : http://drlwilson.com/Articles/IBS.htm
or: http://www.alternative-doctor.com/anti- ... metal.html
Lyn
(who has used water filters for years to reduce ingested copper levels, and only uses aluminium free deodorant, and rarely uses aluminium foil in cooking anymore, and supplements with zinc) oh, and only has D if she does something dumb, like eat too many cashews at a time.
One thing we never talk enough about here is the impact of mineral imbalances. I am no expert in the field, but there is heaps of information out there suggesting a range of health problems associated with metal toxicity. Just recently I was reading of someone suffering digestive problems and ulcers that was traced to titanium toxicity from teeth implants - apparently, sensitivity to titanium is rare but does occur!
May I suggest that at this stage you consider getting a full assessment of your current nutritional status - vitamins and minerals. That would include whatever blood tests your GP can do, but also hair analysis. Hair analysis is often more reliable than other means of testing as minerals tend to be excreted and held in the hair tissue, so it provides a good clue to what minerals your body has in excess, or is deficient in.
There are lots of places that do this analysis. Here is one I have used: http://www.interclinical.com.au/hairtissue.php. What is interesting about the reports from this firm is that they do give you a lot of information on ratios between minerals, which in many cases is more important than the absolute level.
Vitamin checks will also help you to determine if you need direct supplementation - for example, B12 injections - to make sure you are getting the nutrition you need.
One approach to consider is to get all the figures now so you have a baseline for your nutritional status, and then if you do go the imuran way, at least you will be able to see where it is helping and where you may still need to try something else.
Here is one place to start looking at the effects of mineral imbalances (though I am not saying I agree with everything these guys have to say!) : http://drlwilson.com/Articles/IBS.htm
or: http://www.alternative-doctor.com/anti- ... metal.html
Lyn
(who has used water filters for years to reduce ingested copper levels, and only uses aluminium free deodorant, and rarely uses aluminium foil in cooking anymore, and supplements with zinc) oh, and only has D if she does something dumb, like eat too many cashews at a time.