Ok, let's start with what I "know". I know I have Lymphocytic Colitis, I know I have the gene for Celiac as well as Gluten Intolerance, I know that I am gluten intolerant (both via stool [Enterolab] and how I feel), I know that I don't tolerate fructose. And I think that dairy is an issue.
Enterolab says that the the proteins in egg, soy and casein aren't showing anti bodies. Could I still be allergic/intolerant?
I've been gluten free for some time, a year or more now, though I'm sure I've glutened myself here and there. So I'm guessing that testing for Celiac via blood is out.
So knowing what you know now, what exactly would you test for to figure out what other foods give you issues and to determine if you are anemic in anything?
So what specific tests would you have done? What tests work and what tests are bogus?
The reason I ask is that there still appears to be something affecting my GI health (symptoms) and I feel tired/lethargic quite a bit of the time now.
Thanks,
Mike
Going Back To Square One, What testing would you do?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mike,
What I did when I reached your stage was to eliminate every food that could be a problem and then wait until I felt better. When I did, about 2 weeks, I started adding one at a time. Hence my version of the elimination diet was born. I used a list of everything that gave people on this board problems, starting with the most common first: dairy, corn, soy, etc. (See the elimination diet).
I don't think there are any medical tests that work as well. In your case, I would suspect corn, but it's possible that dairy and soy are problems also. Why do you say you have problems with fructose? It's usually made from corn...
Love, Jean
What I did when I reached your stage was to eliminate every food that could be a problem and then wait until I felt better. When I did, about 2 weeks, I started adding one at a time. Hence my version of the elimination diet was born. I used a list of everything that gave people on this board problems, starting with the most common first: dairy, corn, soy, etc. (See the elimination diet).
I don't think there are any medical tests that work as well. In your case, I would suspect corn, but it's possible that dairy and soy are problems also. Why do you say you have problems with fructose? It's usually made from corn...
Love, Jean
Be kind to everyone, because you never know what battles they are fighting.
Hi Mike,
I'm so sorry...I feel your frustration. I think Jean has the right idea.
In my case, I have mentally shut down my ties with the pleasure for food (temporarily). I only eat a few things that I don't react to. While my D isn't cured (or close) it is softly formed every time and the quantity is back close to normal. But the major thing is I'm feeling a lot better...not perfect....which is why I am wondering for some of us...are our systems so pissed off that the inflamation just won't tone down as quickly as for others.
Here is what I have planned for me. I'm trying probiotics for a month...then increasing acid in stomach for a month. If after that if I am still having problems I am going to seriously consider taking entocort...because my diet has been free of every conceivable intolerences and at that point I will assume my body needs help with the inflamation and that maybe my system will then be less sensitive to every food that comes my way.
Are you still having D or do you feel sick?
I would try Jean's elimination diet first...dairy is the one I would suspect first. Good Luck Mike.
Love,
Cristi
I'm so sorry...I feel your frustration. I think Jean has the right idea.
In my case, I have mentally shut down my ties with the pleasure for food (temporarily). I only eat a few things that I don't react to. While my D isn't cured (or close) it is softly formed every time and the quantity is back close to normal. But the major thing is I'm feeling a lot better...not perfect....which is why I am wondering for some of us...are our systems so pissed off that the inflamation just won't tone down as quickly as for others.
Here is what I have planned for me. I'm trying probiotics for a month...then increasing acid in stomach for a month. If after that if I am still having problems I am going to seriously consider taking entocort...because my diet has been free of every conceivable intolerences and at that point I will assume my body needs help with the inflamation and that maybe my system will then be less sensitive to every food that comes my way.
Are you still having D or do you feel sick?
I would try Jean's elimination diet first...dairy is the one I would suspect first. Good Luck Mike.
Love,
Cristi
Mike, If I were you I would go to the Mayo Clinic in Rochester, MN, the top-rated hospital in the U.S. for digestive disorders. There is a GI there who specializes in LC and that's the one I'd see. And I wouldn't let anything or anyone stop me from that path. Good luck and I'm routing for you.
Love,
Carole
Love,
Carole
Mike
I wish I could tell you what tests would give a definitive answer to your questions . In my case I ran out of questions and with the logic of that, came to the wrong conclusions that I had run out of answers. Besides tests and what you eat their is a third factor that has rarely been discussed that has clearly been a factor for some of us, that is the factor of time. No matter how good a diet and no matter how many triggers you find it takes time for the body to heal. It takes time for the body to come back to equilibrium. It takes time for the immune system to quit reacting. It takes time to quit agonizing over the symptoms therefore making the symptoms worse. With as pure a diet as I could eat it took me nine months to have consistent periods with fewer and fewer symptoms. It may take longer depending on what the individuals problems really are. Years later I still learn and still revel in the “little” (HAHA understatement) bits I learn from all the wise people here. I admire your search for more answers in that that was a good part of my healing so go for it if that is working but I found the most relief when I was able to relax in knowing I was doing the right thing with the right approach and giving it time to happen.
A good part of learning how to give it time to happen I attribute to Jon Kabat-Zinn and his book ”Full Catastrophe Living” A primer on mindfulness, transformation, healing and restoring ones own spirit and health . Jon Kabat -Zinn , Ph.D Developed the program of the stress reduction clinic at the University of Massachusetts Medical Center bringing together the best of eastern Philosophy and western technology all in the setting of a modern hospital . It truly brought many insights to my whole approach to MC and to be able to live the way I do now, reveling in the foods I can eat and what I can do and can be.
To your continued recovery
Matthew
I wish I could tell you what tests would give a definitive answer to your questions . In my case I ran out of questions and with the logic of that, came to the wrong conclusions that I had run out of answers. Besides tests and what you eat their is a third factor that has rarely been discussed that has clearly been a factor for some of us, that is the factor of time. No matter how good a diet and no matter how many triggers you find it takes time for the body to heal. It takes time for the body to come back to equilibrium. It takes time for the immune system to quit reacting. It takes time to quit agonizing over the symptoms therefore making the symptoms worse. With as pure a diet as I could eat it took me nine months to have consistent periods with fewer and fewer symptoms. It may take longer depending on what the individuals problems really are. Years later I still learn and still revel in the “little” (HAHA understatement) bits I learn from all the wise people here. I admire your search for more answers in that that was a good part of my healing so go for it if that is working but I found the most relief when I was able to relax in knowing I was doing the right thing with the right approach and giving it time to happen.
A good part of learning how to give it time to happen I attribute to Jon Kabat-Zinn and his book ”Full Catastrophe Living” A primer on mindfulness, transformation, healing and restoring ones own spirit and health . Jon Kabat -Zinn , Ph.D Developed the program of the stress reduction clinic at the University of Massachusetts Medical Center bringing together the best of eastern Philosophy and western technology all in the setting of a modern hospital . It truly brought many insights to my whole approach to MC and to be able to live the way I do now, reveling in the foods I can eat and what I can do and can be.
To your continued recovery
Matthew
Mike,
About all I can add is yes, you can still be intolerant to a food item, even though a stool test yields negative results. There are other, (minor), proteins in those food items that are not tested for, that you might be intolerant of. The "results" information that Enterolab sends out mentions that possibility.
Also, you are correct--after you have been GF for a year, a blood test will not yield a positive result for gluten sensitivity.
Tex.
About all I can add is yes, you can still be intolerant to a food item, even though a stool test yields negative results. There are other, (minor), proteins in those food items that are not tested for, that you might be intolerant of. The "results" information that Enterolab sends out mentions that possibility.
Also, you are correct--after you have been GF for a year, a blood test will not yield a positive result for gluten sensitivity.
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.
Hi Mike!
If I were starting from scratch again, I would have all of Dr. Fine's tests right off the bat.
The above posts have excellent info. To summarize and add my experience:
1) As Matthew says, it takes TIME. It took me almost 9 months on the diet to see my first formed B.M. Looking back I can't believe I kept going on the diet for so long without full success, but I'm sure it was because of all of the wonderful support and encouragement here.
2) It is not unusual for new intolerances to appear after you have been on the diet for a while. Dr. Fine says it's due to the body becoming "purer" or something like that. I think that once the gluten is tackled, the other triggers become more noticeable. I agree that Jean's elimination diet might be a good next step for you in order to "fine-tune" your diet. It took me many months to fine-tune mine.
3) I and others have found that the MC symptom that persists the longest is FATIGUE. In fact, I still had a lot of it after a year on the diet. At the 2 year mark I realized that it was much better, and by the 3 year mark it was GONE! At this point (almost 5 years on diet) I have endless energy and feel better than I ever have in my life.
4) I agree with Wayne that maybe it is the corn in high fructose corn syrup that is giving you problems. Since corn is a grain it is often a trigger. It took me a while to discover my corn intolerance.
Good luck! You are making terrific progress and should give yourself a pat on the back.
Love,
Polly
If I were starting from scratch again, I would have all of Dr. Fine's tests right off the bat.
The above posts have excellent info. To summarize and add my experience:
1) As Matthew says, it takes TIME. It took me almost 9 months on the diet to see my first formed B.M. Looking back I can't believe I kept going on the diet for so long without full success, but I'm sure it was because of all of the wonderful support and encouragement here.
2) It is not unusual for new intolerances to appear after you have been on the diet for a while. Dr. Fine says it's due to the body becoming "purer" or something like that. I think that once the gluten is tackled, the other triggers become more noticeable. I agree that Jean's elimination diet might be a good next step for you in order to "fine-tune" your diet. It took me many months to fine-tune mine.
3) I and others have found that the MC symptom that persists the longest is FATIGUE. In fact, I still had a lot of it after a year on the diet. At the 2 year mark I realized that it was much better, and by the 3 year mark it was GONE! At this point (almost 5 years on diet) I have endless energy and feel better than I ever have in my life.
4) I agree with Wayne that maybe it is the corn in high fructose corn syrup that is giving you problems. Since corn is a grain it is often a trigger. It took me a while to discover my corn intolerance.
Good luck! You are making terrific progress and should give yourself a pat on the back.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Jean, Yeah, I did the ellimination diet, found reactions to corn, dairy and eggs.Jean wrote:Hi Mike,
What I did when I reached your stage was to eliminate every food that could be a problem and then wait until I felt better. When I did, about 2 weeks, I started adding one at a time. Hence my version of the elimination diet was born. I used a list of everything that gave people on this board problems, starting with the most common first: dairy, corn, soy, etc. (See the elimination diet).
I don't think there are any medical tests that work as well. In your case, I would suspect corn, but it's possible that dairy and soy are problems also. Why do you say you have problems with fructose? It's usually made from corn...
Love, Jean
But there are so many other things that are just little ingredients here and there that might be an issue that are hard to trace. For example I think that red pepper might be something that causes me to feel ill. There are just so many things to elliminate that it's overwelming the ammount of things beyond the basics.
What is also odd is that though corn (frozen) was an issue, tortilla chips doen't appear to cause issues. I tried lactaid milk, it wasn't the same reaction as I got from the cheese, but I still felt a bit off. My wife adds eggs to things here and there and I don't seem to react much, perhaps it's the amount.
If I was a bachelor it'd be easy and I'd just do it. Being married with kids is a whole different story. If my wife makes something I ask what's in it, she says I don't trust her, but then something is still making me sick so I wonder what it is. She's said she's added dairy, and milk to things and I haven't gotten sick (or so she thinks) so it's ok to add those things. She feel's really limited in what she can make for me and I agree. I don't mind being limited for the most part, though I do admit I miss some foods that I used to eat.
So an ELISA test panel does nothing for me?
I have problems with excess fructose no matter the source. Honey, blueberries (too many), raisens, cherries, pretty much all fruits high in fructose. So I can eat a bit of it at a time, and not too much during the day and I'm fine. Eat too much and I'm crampy, pain, gassy. Though not like the other symptoms I get every once in a while.
Thanks,
Mike
Hi Cristi, yeah, I think my GI is pissed off. :) Inflamed for sure. So most of the time I seem ok with most of the foods I've found I'm tollerant of, but then every once in a while it seems I can't eat anything without upseting it.cludwig wrote:Hi Mike,
I'm so sorry...I feel your frustration. I think Jean has the right idea.
In my case, I have mentally shut down my ties with the pleasure for food (temporarily). I only eat a few things that I don't react to. While my D isn't cured (or close) it is softly formed every time and the quantity is back close to normal. But the major thing is I'm feeling a lot better...not perfect....which is why I am wondering for some of us...are our systems so pissed off that the inflamation just won't tone down as quickly as for others.
Here is what I have planned for me. I'm trying probiotics for a month...then increasing acid in stomach for a month. If after that if I am still having problems I am going to seriously consider taking entocort...because my diet has been free of every conceivable intolerences and at that point I will assume my body needs help with the inflamation and that maybe my system will then be less sensitive to every food that comes my way.
Are you still having D or do you feel sick?
I would try Jean's elimination diet first...dairy is the one I would suspect first. Good Luck Mike.
Love,
Cristi
Right now I'm not having D, though I've had it 2 times in the last few weeks. Which is abnormal for me, I've been doing very well for some time, but recently have had a few episodes of what I talked about in the other thread. Proctitis, etc. So I feel off, but not as bad as I can get.
I don't eat dairy for the most part unless someone is sneaking it into my diet.
Thanks,
Mike
Some day I might just have to do that. Right now it's not something that I can do for cost, psychological and time issues. Someday maybe.Carrie wrote:Mike, If I were you I would go to the Mayo Clinic in Rochester, MN, the top-rated hospital in the U.S. for digestive disorders. There is a GI there who specializes in LC and that's the one I'd see. And I wouldn't let anything or anyone stop me from that path. Good luck and I'm routing for you.
Love,
Carole
Thanks though as it is something to keep in mind.
Matthew, you're right, and I don't give myself enough credit for how far I've come at times and I probably need more time to heal. I can't remember how long it's been since I've been gluten free, but it has to be close to 2 years, at least a year and a half. I've been mostly dairy free for a while now, soy I haven't cut and corn I haven't cut. Though I suspect soy. Crap! One more thing. :(Matthew wrote:Mike
I wish I could tell you what tests would give a definitive answer to your questions . In my case I ran out of questions and with the logic of that, came to the wrong conclusions that I had run out of answers. Besides tests and what you eat their is a third factor that has rarely been discussed that has clearly been a factor for some of us, that is the factor of time. No matter how good a diet and no matter how many triggers you find it takes time for the body to heal. It takes time for the body to come back to equilibrium. It takes time for the immune system to quit reacting. It takes time to quit agonizing over the symptoms therefore making the symptoms worse. With as pure a diet as I could eat it took me nine months to have consistent periods with fewer and fewer symptoms. It may take longer depending on what the individuals problems really are. Years later I still learn and still revel in the “little” (HAHA understatement) bits I learn from all the wise people here. I admire your search for more answers in that that was a good part of my healing so go for it if that is working but I found the most relief when I was able to relax in knowing I was doing the right thing with the right approach and giving it time to happen.
A good part of learning how to give it time to happen I attribute to Jon Kabat-Zinn and his book ”Full Catastrophe Living” A primer on mindfulness, transformation, healing and restoring ones own spirit and health . Jon Kabat -Zinn , Ph.D Developed the program of the stress reduction clinic at the University of Massachusetts Medical Center bringing together the best of eastern Philosophy and western technology all in the setting of a modern hospital . It truly brought many insights to my whole approach to MC and to be able to live the way I do now, reveling in the foods I can eat and what I can do and can be.
To your continued recovery
Matthew
You're right about the not worrying about it part. I know that this can contribute to stress and thus GI well being. This I am working on slowly but surely.
Thanks for the book idea, I'm definitly going to take a look at it. Boy, so many books to read on my list right now and so little time it seems. LOL
Thanks Matthew, and I wish you all the best as well.
Thanks,
Mike
Thanks for the info Wayne. :)tex wrote:Mike,
About all I can add is yes, you can still be intolerant to a food item, even though a stool test yields negative results. There are other, (minor), proteins in those food items that are not tested for, that you might be intolerant of. The "results" information that Enterolab sends out mentions that possibility.
Also, you are correct--after you have been GF for a year, a blood test will not yield a positive result for gluten sensitivity.
Tex.
Hi Polly, Got Dr Fines tests. All of em. So that parts done. :)Polly wrote:Hi Mike!
If I were starting from scratch again, I would have all of Dr. Fine's tests right off the bat.
The above posts have excellent info. To summarize and add my experience:
1) As Matthew says, it takes TIME. It took me almost 9 months on the diet to see my first formed B.M. Looking back I can't believe I kept going on the diet for so long without full success, but I'm sure it was because of all of the wonderful support and encouragement here.
2) It is not unusual for new intolerances to appear after you have been on the diet for a while. Dr. Fine says it's due to the body becoming "purer" or something like that. I think that once the gluten is tackled, the other triggers become more noticeable. I agree that Jean's elimination diet might be a good next step for you in order to "fine-tune" your diet. It took me many months to fine-tune mine.
3) I and others have found that the MC symptom that persists the longest is FATIGUE. In fact, I still had a lot of it after a year on the diet. At the 2 year mark I realized that it was much better, and by the 3 year mark it was GONE! At this point (almost 5 years on diet) I have endless energy and feel better than I ever have in my life.
4) I agree with Wayne that maybe it is the corn in high fructose corn syrup that is giving you problems. Since corn is a grain it is often a trigger. It took me a while to discover my corn intolerance.
Good luck! You are making terrific progress and should give yourself a pat on the back.
Love,
Polly
1) I think the damage I had wasn't very significant as my symtoms seem rather mild compared to most. Most of the time now I have normal BMs. It seems that at times I get clusters of sick days now and most of the time I'm ok, actually feeling good.
2) I agree, lactose and fructose being the new ones that were probably masked/hidden by the gluten reactions and poor diet. I think I've fined tuned as much as an elimination diet would work unless I take every individual ingredient there is and figure out how to work it in. That's why I'm wondering about testing now. Plus if something comes back positive for intolerance then I can show my wife and she'd support me more, though if it comes back negative and it's something that makes me sick then where do I go? :(
3) Yep, finding myself tired now most every day. Though perhaps I'm not eating enough now, it's a double edged sword. Eat more then get more chance of getting sick, get sick and I don't feel like eating much. Ugg!
4) HFCS I think is an issue, though it appears that it's mostly the fructose that's the issue and not the corn. As other fructose bearing foods give me cramps, gas, aches etc. Though I will admit that corn could still be one of those hidden things.
Yes, I need to give myself more credit, something that I'm not very good at doing right now. Ha, there I go again. LOL
Thanks,
Mike
Hi Mike,
Another thing to consider is bacterial overgrowth. I had a stool test because I was eating the same diet every day and doing well some days and not other days. Every site I went to on colitis in general refer to bacterial over growth issues. My tests came back indicated significant overgrowth and missing an important good bacteria. So when I search for remedies for bacteria overgrowth, the first thing it mentions is to decrease carbs and increase fat.
So I started putting olive oil on everything ...abundantly. I went through a 12 oz. bottle of olive oil last week...just for me. I cook with it and pour it over my meal before I eat. I also put it in fruit smooties. Before it felt like I might be reacting a little to the fruit with some bloating and gas....but adding the oil eliminated those symptoms for me.
I think for a lot of people ...not just MCers that there are foods that you can tolerate in small quantities once or twice a week..but get sick if you have more often. I've been like that long before MC.
Anyway, I just wanted to share with you one small baby step that seems to be helping some with me.
Love,
Cristi
Another thing to consider is bacterial overgrowth. I had a stool test because I was eating the same diet every day and doing well some days and not other days. Every site I went to on colitis in general refer to bacterial over growth issues. My tests came back indicated significant overgrowth and missing an important good bacteria. So when I search for remedies for bacteria overgrowth, the first thing it mentions is to decrease carbs and increase fat.
So I started putting olive oil on everything ...abundantly. I went through a 12 oz. bottle of olive oil last week...just for me. I cook with it and pour it over my meal before I eat. I also put it in fruit smooties. Before it felt like I might be reacting a little to the fruit with some bloating and gas....but adding the oil eliminated those symptoms for me.
I think for a lot of people ...not just MCers that there are foods that you can tolerate in small quantities once or twice a week..but get sick if you have more often. I've been like that long before MC.
Anyway, I just wanted to share with you one small baby step that seems to be helping some with me.
Love,
Cristi
Mike,
I would've had my colonoscopy "screening" at 50 instead of 55, or even sooner if I knew how far back the biopsies were routinely done, but then before the diagnosis, I wouldn't have known I needed biopsies, would I? Ha!
I have a very excellent GI who is one to keep up to date on things, but I'm not sure how long this has been standard practice anywhere, is anyone here? At any rate, now it is standard practice, so anyone out there in cyberland reading this, if you haven't already had biopsies of your colon, go do it now!
I wish I'd felt comfortable joining the group right after my diagnosis because that delayed things another year. It was a trust factor, I'm sure, and I didn't understand that there was a scientific basis to the gluten free diet because I didn't read enough, so I would've wanted to read Dr. Fine's lecture on "until the villi are flat" early on. I just thought it was some magical idea that someone mentioned on a support group -- sort of like folk medicine or something, so, having a scientific background, I didn't even lerk for most of another year.
I came back in another year in desparation after having told God that I couldn't take it anymore, so He'd just have to take over this one.
For some reason, not long after that, I decided that to return to the old site, and thought "How could joining a support group hurt any more than I was already hurting?"
I mean I couldn't walk for the pain by then!
I think I may have run across Dr. Fine's old site, but didn't trust things I read on the net, particularly if they were offering services for sale, so didn't get far enough into it to understand it.
I got some beginner explanations here from Polly and others, so with those tools, and my science background, it was no time until I understood why the gluten was the problem most likely, and delved in earnest into the complete elimination of gluten as fast as I could discover sources.
I recovered from all but a tiny bit of D and lots of fatigue once totally off gluten, but since I know now that I also had antibodies to casein, eggs, dietary yeast species, and probably soy, I would've preferred to have gotten rid of those as soon as possible while working toward a gf lifestyle, so I would've done the testing ASAP instead of waiting a few months. Also, I would've done them altogether instead of only doing half of them the first time.
OK, so you are with me up to now, right?
Here are some other things that I would've gotten done immediately due to the malabsorption that we tend to have.
I would've been tested for B-12/folate deficiency, and started on the two vits much earlier. I needed to be on folate anyway due to the removal of the government mandated fortification of certain grains with folate which I was not now eating.
Then, I would've had a bone density done, even if I weren't of the usual starting age for a baseline one of those, so that I could begin doing something about my bone loss.
I believe that your GI or primary doc could order those based on your diagnosis of M.C., most likely, but who knows about insurance these days!
I would've also requested testing for the two forms of Vit D, etc., but it might take a bone loss diagnosis for your insurance to cover it.
I think you should have it BEFORE you develop serious bone loss. On the other hand, if you've not been malabsorbing long, then maybe you'll not lose bone like so man of us do.
I would've started with the SUBLINGUAL form of B-12 /folate as well as B-6, possibly the amount found in a small B-vit capsule so as not to get too much. I had nerve damage due to my B-12 being only slightly above what the lab lists as normal lower limit. It SHOULD be kept above 400, at least, not 200.
If I were you, I'd take over the preparation of my own food, even if it means having to eat much simpler than you've become accustomed to.
If I were you, I would buy a Lactose-free milk product that your wife could use in small amounts if, and only if you are sure she's taking your diet seriously. It could be that her plate is just full with the kids and all, and that she needs you to do some of the preparation of your special foods yourself right now.
Why not simply lay off some of the sugars that bother you until the gut has had a little more time to heal, and then, try to add a little more back in when your gut has been quiet for a while.
While it is a possibility that some of these other proteins besides the ones that Dr. Fine and allergists test for could be causing you to react this way occasionally, I would say that the percentages of persons like that would be fairly low, judging from all the gluten sensitive people that have associated themselves with this group through the years. You can always try eliminating corn next if removing soy doesn't help, and go from there, but I would give increased attention to possible sources of gluten before removing the corn, and then other things a few people on this site list to the right under their avatar.
You can still slow down on the HFCS without totally giving up corn products, so why not just try eliminating the HFCS (including soft drinks) before removing corn for a trial.
The fatigue really gets to you I know. Be sure you are getting a well balanced meal in a form you can digest right now.
Too sleepy to continue, but hope this helps.
Yours, Luce
I would've had my colonoscopy "screening" at 50 instead of 55, or even sooner if I knew how far back the biopsies were routinely done, but then before the diagnosis, I wouldn't have known I needed biopsies, would I? Ha!
I have a very excellent GI who is one to keep up to date on things, but I'm not sure how long this has been standard practice anywhere, is anyone here? At any rate, now it is standard practice, so anyone out there in cyberland reading this, if you haven't already had biopsies of your colon, go do it now!
I wish I'd felt comfortable joining the group right after my diagnosis because that delayed things another year. It was a trust factor, I'm sure, and I didn't understand that there was a scientific basis to the gluten free diet because I didn't read enough, so I would've wanted to read Dr. Fine's lecture on "until the villi are flat" early on. I just thought it was some magical idea that someone mentioned on a support group -- sort of like folk medicine or something, so, having a scientific background, I didn't even lerk for most of another year.
I came back in another year in desparation after having told God that I couldn't take it anymore, so He'd just have to take over this one.
For some reason, not long after that, I decided that to return to the old site, and thought "How could joining a support group hurt any more than I was already hurting?"
I mean I couldn't walk for the pain by then!
I think I may have run across Dr. Fine's old site, but didn't trust things I read on the net, particularly if they were offering services for sale, so didn't get far enough into it to understand it.
I got some beginner explanations here from Polly and others, so with those tools, and my science background, it was no time until I understood why the gluten was the problem most likely, and delved in earnest into the complete elimination of gluten as fast as I could discover sources.
I recovered from all but a tiny bit of D and lots of fatigue once totally off gluten, but since I know now that I also had antibodies to casein, eggs, dietary yeast species, and probably soy, I would've preferred to have gotten rid of those as soon as possible while working toward a gf lifestyle, so I would've done the testing ASAP instead of waiting a few months. Also, I would've done them altogether instead of only doing half of them the first time.
OK, so you are with me up to now, right?
Here are some other things that I would've gotten done immediately due to the malabsorption that we tend to have.
I would've been tested for B-12/folate deficiency, and started on the two vits much earlier. I needed to be on folate anyway due to the removal of the government mandated fortification of certain grains with folate which I was not now eating.
Then, I would've had a bone density done, even if I weren't of the usual starting age for a baseline one of those, so that I could begin doing something about my bone loss.
I believe that your GI or primary doc could order those based on your diagnosis of M.C., most likely, but who knows about insurance these days!
I would've also requested testing for the two forms of Vit D, etc., but it might take a bone loss diagnosis for your insurance to cover it.
I think you should have it BEFORE you develop serious bone loss. On the other hand, if you've not been malabsorbing long, then maybe you'll not lose bone like so man of us do.
I would've started with the SUBLINGUAL form of B-12 /folate as well as B-6, possibly the amount found in a small B-vit capsule so as not to get too much. I had nerve damage due to my B-12 being only slightly above what the lab lists as normal lower limit. It SHOULD be kept above 400, at least, not 200.
If I were you, I'd take over the preparation of my own food, even if it means having to eat much simpler than you've become accustomed to.
If I were you, I would buy a Lactose-free milk product that your wife could use in small amounts if, and only if you are sure she's taking your diet seriously. It could be that her plate is just full with the kids and all, and that she needs you to do some of the preparation of your special foods yourself right now.
Why not simply lay off some of the sugars that bother you until the gut has had a little more time to heal, and then, try to add a little more back in when your gut has been quiet for a while.
While it is a possibility that some of these other proteins besides the ones that Dr. Fine and allergists test for could be causing you to react this way occasionally, I would say that the percentages of persons like that would be fairly low, judging from all the gluten sensitive people that have associated themselves with this group through the years. You can always try eliminating corn next if removing soy doesn't help, and go from there, but I would give increased attention to possible sources of gluten before removing the corn, and then other things a few people on this site list to the right under their avatar.
You can still slow down on the HFCS without totally giving up corn products, so why not just try eliminating the HFCS (including soft drinks) before removing corn for a trial.
The fatigue really gets to you I know. Be sure you are getting a well balanced meal in a form you can digest right now.
Too sleepy to continue, but hope this helps.
Yours, Luce