I have been a lurking member for a few months now and have not introduced myself yet, except to Tex in private emails. He has been a tremendous help to me and very supportive. I have read sections of his book and also many of the posts here. You have all unknowingly given me a real sense of security in knowing that there are so many people out there who are in the same situation I am in.
OK… here is my introduction. I was DX with CC in May, 2013 from upper and lower scopes and biopsies. I have been GF since January 1, 2013 when a stool test from Genova Diagnostics said I had a high level of anti-gliadins. Other tests I have had didn’t show celiac. I also had genetic testing done, which was negative, but when I mentioned the results to Tex, he agreed I was not celiac but do show genetic gluten intolerance. I have also been mostly dairy free since then as well, but still have a tiny bit of Parmesan cheese and Brummel and Brown yogurt-based butter on occasion. The GI felt that the CC came from taking Excedrin and/or NSAIDS for so many years on a regular basis. I have since stopped all of those, except for an acetaminophen with caffeine every morning for morning sinus issues.
Even going GF didn’t seem to make a big difference in my well-being, so I ordered the Enterolab tests A & C just last week and also ordered the MRT test kit yesterday. It seems that everything I eat gives me D so I hardly eat at all now. I also, thanks to reading posts from this group, feel that I probably have a mast cell issue. I started taking Claritin Redi-tabs 5 days ago and I think it is actually helping. The GI prescribed Asacol first, which I think made it worse so I have been on Entocort since June 21. I guess it’s working but I’m not sure. BTW, she is also of the school that diet doesn’t matter with MC. When I told her I had been off gluten since January but I wasn’t feeling any better, she said I should go back on it then… it’s easier! Luckily, I didn’t listen to her advice, but listened instead to my Nurse Practitioner who has been treating me. So I have eastern and western philosophies at odds in my treatment. I also see a nutritionist regularly (who herself is also gluten intolerant) but doesn’t really know much about MC. She has encouraged me to beef up the fiber, but that obviously did NOT work!
I had SIBO earlier in the year and got rid of it the first time with Augmentin, but it came back, so I recently finished another course of Augmentin. Around the same time, I had a UTI, so I was treated for that with Macrobid twice until a culture found it was the wrong antibiotic. I just finished 5 days of Ceftin and I am hoping that did the trick. I think that the UTI may be from the mast cell issue, since I haven’t had a UTI in many years. I am afraid that all the antibiotics may aggravate the CC or the SIBO, but I have to get rid of the UTI.
All of this seems to have come on at once, mostly all this year. I had always had “IBS” but never anything to this extent. It also seemed like whenever I travelled anywhere, I would spend at least one night after dinner in the bathroom, for some unknown food that I ate... or maybe it was nerves/stress. Now I live in fear that D will strike at any time, and like all of you, I know where all the bathrooms are wherever I go.
I guess this is a pretty lengthy introduction, but Tex has encouraged me to write in, so here I am! I am presently awaiting results from Enterolab, and waiting for the vials to be delivered to me by Oxford Biomedical Technologies. BTW, I contacted a NOWLEAP dietician in my area, and after waiting a week to hear back from her for a free 15 minute telephonic “meet and great”, she told me her cost for the tests and counseling was $1375. After I dismissed that option, I immediately called Oxford and they told me they would send out the vials and I could have the blood drawn at a lab near me ($20) and then they would send it back to them… for $595. I chose that option, and I am hoping that this group can help me with the diet once the results come back from Oxford… and from Enterolab.
In reading this over, I am shocked that this is my life! It’s so depressing. I am about to be 68 and have been in fairly decent health most of my life, except for a “sensitive stomach”. I do have osteoporosis, but that’s for another post. I’m sorry for the length of this post. I am so grateful for all of you! Thank you!
I'm sort of a Newbie/Lurker. My intro (it's long!)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Artluver22
- Posts: 19
- Joined: Wed May 15, 2013 8:35 am
- Location: Newbury Park, California, USA
Oh wow....this looks like I could have written your post. I have read alot of Tex's book and I am praying that I can turn this around with diet. I bought the book on Kindle but realized I may need a hard copy to mark up and carry with me!! I am on Endocort and it is not helping like it did in the past. The GI put me on 6mg a day - I may bump it up to 9 which is what I did when it first worked. I am thinking of getting the testing done at Enterlab but I think I need to find out about my IG-A first...or something like that. I need to email Tex and find out more about that. I am assuming my insurance won't cover the lab...I am almost afraid to ask the GI doctor as I think she may think I am crazy for doing that. I do know that I am miserable right now. Have pretty much cut back to cooked veg, meat, applesauce and dry GF cereal this week. Ginger tea and water. Bought some canned pears for a splurge this weekend. I am somewhat confused as to which test is the best....one is $500 something and there is one that is $250 or so which looks like it tests what most people have trouble with gluten, dairy etc. I am also thinking about trying the elimination diet...wonder if the info is as useful as lab results....what say you experts????
I also stalked this site for a while before I got brave and posted! Aren't we funny!!!
I also stalked this site for a while before I got brave and posted! Aren't we funny!!!
Everything will be ok in the end, if it's not ok, it's not the end.
Hi,
Welcome to our internet family. It's good to see you posting your story on the board. I hope that the Ceftin does the job.
Other members in California have complained of the high cost of services by nutritionists. Apparently they must think that anyone who lives in California is a movie star, so they price their services accordingly. LOL. Unfortunately, most dietitians aren't familiar with MC anyway, so their suggested testing program usually recommends introducing too many new foods into the diet, too quickly. Most of us tend to do much better if we slow down the testing procedure significantly. There are enough members here who have experience with the LEAP program that we should be able to offer some guidance to help you design your dietary testing program, based on your test results.
The main thing to remember is that the results that you will get from EnteroLab are much more reliable than the results that you will get from the blood test. So anytime there is a conflict, you can safely assume that the EnteroLab result is the safest choice.
This disease definitely imposes a major detour into the road of life, but with some detective work to figure out which foods we need to avoid, and the perseverance and attention to detail needed to make the proper diet changes, we can get our life back. That's not to say that our life will be identical to what it was before the disease developed, but it can certainly be close enough in most cases, for all practical purposes.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. It's good to see you posting your story on the board. I hope that the Ceftin does the job.
Other members in California have complained of the high cost of services by nutritionists. Apparently they must think that anyone who lives in California is a movie star, so they price their services accordingly. LOL. Unfortunately, most dietitians aren't familiar with MC anyway, so their suggested testing program usually recommends introducing too many new foods into the diet, too quickly. Most of us tend to do much better if we slow down the testing procedure significantly. There are enough members here who have experience with the LEAP program that we should be able to offer some guidance to help you design your dietary testing program, based on your test results.
The main thing to remember is that the results that you will get from EnteroLab are much more reliable than the results that you will get from the blood test. So anytime there is a conflict, you can safely assume that the EnteroLab result is the safest choice.
This disease definitely imposes a major detour into the road of life, but with some detective work to figure out which foods we need to avoid, and the perseverance and attention to detail needed to make the proper diet changes, we can get our life back. That's not to say that our life will be identical to what it was before the disease developed, but it can certainly be close enough in most cases, for all practical purposes.
Again, welcome aboard, and please feel free to ask anything.
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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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Welcome to you both! I just wanted to speak to the IgA issue. When I got my Enterolab tests done, they showed I was intolerant of nothing and the lab suggested that because of my genetic results showing gluten intolerance that I might have selective IgA deficiency. I had it tested, and it was fine. Recently I had my whole genome deciphered and found out that I indeed have a gene for selective IgA deficiency.
Because the Enterolab tests didn't show anything, I did an elimination diet. Over the course of about 18 months I figured out pretty much everything. One of the things I figured out is that I have mast cell issues because sometimes I would (do) react and it turns out to be an allergy masquerading as another intolerance. Sigh...
Where I am going is this: If you are hesitant to spend the money on the Enterolab tests, an elimination diet is a perfectly fine way to discover what is going on.
I suspect that you may be intolerant of more grains than wheat, rye, and barley. I suspect you may be intolerant of rice, which is probably in that GF cereal. Is it labeled GF? Or are you assuming it's GF? A lot of cereals that you would think are GF have barley malt in them. Just an idea...
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Jeane,
The test you are referring to is a simple blood test to rule out selective IgA deficiency. Approximately 1 in 500 people in the general population have selective IgA deficiency, which means that they are not capable of producing normal amounts of immunoglobulin A. It appears that for celiacs (and probably others who are sensitive to gluten) the statistics show that roughly 1 in 300 have selective IgA deficiency. Anyone who does not produce normal amounts of immunoglobulin A will tend to show false negative results on any tests that are based on the detection of IgA antibodies.
That means that the EnteroLab stool tests for food sensitivities are not reliable for anyone who has selective IgA deficiency. It also means that the blood tests used by doctors to screen for celiac disease are not reliable for anyone who has selective IgA deficiency, because those tests will also product a false negative result.
Your PCP (or any other doctor) can order that test for you, so you don't have to ask your GI specialist to do it (especially since she apparently doesn't realize that diet changes are very important for controlling the inflammation that causes MC).
And as Marliss points out, apparently that test is not foolproof, so even if it shows normal results, we should be very suspicious if all our EnteroLab results turn out to be negative, but we still seem to react to various foods. Unfortunately, medicine is not a perfect science.
And she is also right on target about the elimination diet. It can certainly be used instead of lab tests. Many of us have used it successfully to help figure out our food sensitivities. It typically takes more dedication than is normally required for following lab test results, and the process can take longer, but it will get the job done if it is used properly.
Tex
The test you are referring to is a simple blood test to rule out selective IgA deficiency. Approximately 1 in 500 people in the general population have selective IgA deficiency, which means that they are not capable of producing normal amounts of immunoglobulin A. It appears that for celiacs (and probably others who are sensitive to gluten) the statistics show that roughly 1 in 300 have selective IgA deficiency. Anyone who does not produce normal amounts of immunoglobulin A will tend to show false negative results on any tests that are based on the detection of IgA antibodies.
That means that the EnteroLab stool tests for food sensitivities are not reliable for anyone who has selective IgA deficiency. It also means that the blood tests used by doctors to screen for celiac disease are not reliable for anyone who has selective IgA deficiency, because those tests will also product a false negative result.
Your PCP (or any other doctor) can order that test for you, so you don't have to ask your GI specialist to do it (especially since she apparently doesn't realize that diet changes are very important for controlling the inflammation that causes MC).
And as Marliss points out, apparently that test is not foolproof, so even if it shows normal results, we should be very suspicious if all our EnteroLab results turn out to be negative, but we still seem to react to various foods. Unfortunately, medicine is not a perfect science.
And she is also right on target about the elimination diet. It can certainly be used instead of lab tests. Many of us have used it successfully to help figure out our food sensitivities. It typically takes more dedication than is normally required for following lab test results, and the process can take longer, but it will get the job done if it is used properly.
I did the same thing back when I stumbled across the original discussion board, back in 2004. I followed it for a couple of weeks before I got up the nerve to join and write my first post. LOL.Jeane wrote:I also stalked this site for a while before I got brave and posted! Aren't we funny!!!
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 AM NOW TRYING TO ELIMINATE CLUTEN AND DIARY FROM MY DIET, SMALL STEPS IS THE WAY TO GO FOR MYSELF.I WAS ON ASOCOL BUT NOW I AM DOWN TO 1 PER DAY. THEY ARE NO GOOD AT ALL.
BUT, I HAVE HAD SOME SUCCESS WITH (YOU WILL BE AMAZED AT THIS) SILOUETTE DIAPERS THEY COVER THE FRONT AND HIGH UP THE BACK. I TESTED ONE CLEAN ONE TODAY IN MY SINK TO SEE IF THEY COULD HOLD A LOT, AND THEY DID. I WAS PLEASED WITH THAT RESULT. NOW I ALWAYS FELT THAT I WOULD HATE TO KNOW I WAS REDUSED TO WEARING THEM. I WEAR THEM IF I GO OUT. AND FOUND THAT WHEN I WEAR THEM, MY MIND IS AT REST, AND, I DONT WANT TO BATHROOM SO URGENT. SO I THINK STRESS AND NERVOUSNESS HAS A LOT TO DO WITH IT. EVEN THOUGH I HAVE GOOD HUMOUR AND AM AN OPTIMIST AT HEART.
THEY ARE A GREAT BAND OF LIKE SPIRITS HERE. SOMEONE ALWAYS READY TO HELP. I FEEL HONOURED TO BE PART OF IT.
SEE SOME GOOD COMES OUT OFF ALL THIS EMBARRISMENT.
KIND REGARDS
MARIE
BUT, I HAVE HAD SOME SUCCESS WITH (YOU WILL BE AMAZED AT THIS) SILOUETTE DIAPERS THEY COVER THE FRONT AND HIGH UP THE BACK. I TESTED ONE CLEAN ONE TODAY IN MY SINK TO SEE IF THEY COULD HOLD A LOT, AND THEY DID. I WAS PLEASED WITH THAT RESULT. NOW I ALWAYS FELT THAT I WOULD HATE TO KNOW I WAS REDUSED TO WEARING THEM. I WEAR THEM IF I GO OUT. AND FOUND THAT WHEN I WEAR THEM, MY MIND IS AT REST, AND, I DONT WANT TO BATHROOM SO URGENT. SO I THINK STRESS AND NERVOUSNESS HAS A LOT TO DO WITH IT. EVEN THOUGH I HAVE GOOD HUMOUR AND AM AN OPTIMIST AT HEART.
THEY ARE A GREAT BAND OF LIKE SPIRITS HERE. SOMEONE ALWAYS READY TO HELP. I FEEL HONOURED TO BE PART OF IT.
SEE SOME GOOD COMES OUT OFF ALL THIS EMBARRISMENT.
KIND REGARDS
MARIE
jmg
OK - no more small steps for me! I am sick and tired of being sick and tired. I got super serious yesterday. I had my coffee black - eliminated stevia and coffee mate ( 21 days makes a habit so I hear). I met some friends for breakfast and the only thing I could find to eat was a banana - so they brought one out on a plate- pretty funny. Then I ate chicken, applesauce, and a sweet potato for lunch/dinner. Only put on salt and pepper - thought I would die when I started, but the day was just fine. I am hoping this works and maybe I will hold off on the lab testing and see if I get obvious answers from this.
Question- I have a drippy nose (not bad) - I am not really stuffy like people with colds or allergies; but I always have a Kleenex with me....reading your posts I have been thinking.....hmmmm. I live in Flordia so the chance of running into molds etc is pretty much going to happen unless I move into a bubble...any comments/suggestions?
To my new friend Marie....I put on a hat and sunglasses(just kidding) and went shopping for depends. I put them on when I have bad days or I am going out and want to feel safe. Funny thing is I have used 2 pkg. and never had a problem when I wear them.... Sometimes I think this is karma because when I was a young woman I worked in nursing homes - listened to the elderly talk of their bowel issues.....I would sigh and roll my eyes when they weren't looking!!!! Isn't life interesting!!??
Question- I have a drippy nose (not bad) - I am not really stuffy like people with colds or allergies; but I always have a Kleenex with me....reading your posts I have been thinking.....hmmmm. I live in Flordia so the chance of running into molds etc is pretty much going to happen unless I move into a bubble...any comments/suggestions?
To my new friend Marie....I put on a hat and sunglasses(just kidding) and went shopping for depends. I put them on when I have bad days or I am going out and want to feel safe. Funny thing is I have used 2 pkg. and never had a problem when I wear them.... Sometimes I think this is karma because when I was a young woman I worked in nursing homes - listened to the elderly talk of their bowel issues.....I would sigh and roll my eyes when they weren't looking!!!! Isn't life interesting!!??
Everything will be ok in the end, if it's not ok, it's not the end.
Good luck with your treatment program.An OTC antihistamine should resolve that problem (if the first brand you try doesn't work, try a different brand), and many members here who have mast cell problems, find that taking a daily antihistamine works almost as well as budesonide for helping to control D. If you are avoiding dairy products, be aware that Claritin contains a lactose-based ingredient. The Claritin Redi-tabs are free of dairy, though, so most members here who use Claritin use the Redi-tabs.Jeane wrote:Question- I have a drippy nose (not bad) - I am not really stuffy like people with colds or allergies; but I always have a Kleenex with me....reading your posts I have been thinking.....hmmmm. I live in Flordia so the chance of running into molds etc is pretty much going to happen unless I move into a bubble...any comments/suggestions?
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.
Jeane,
Not everyone has problems with the regular Claritin, because the amount of lactose is relatively small. Whether or not it's an issue depends on how sensitive we are to dairy.
Tex
Not everyone has problems with the regular Claritin, because the amount of lactose is relatively small. Whether or not it's an issue depends on how sensitive we are to dairy.
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.
Welcome to our family!
I am one of those people who sent away for the Enterolab tests and got ... nothing. Got my blood tested and , yup: selective IgA deficiency. Then I was tested for more and it turns out that some of my IgGs are also very very low.
I am also one of us who has mast cell/histamine issues. I am practically normal when I take an Allegra in the morning and a Benadryl at night. ... of course that is after 6 months of Entocort and an elimination diet.
This all takes time to figure out, but I truly believe that the diet is key. Stay away from fiber ( beans, legumes,raw fruits and veggies). NO gluten, dairy, or soy.
ANd give it time to work.It takes months. Be patient.
Good luck
leah
I am one of those people who sent away for the Enterolab tests and got ... nothing. Got my blood tested and , yup: selective IgA deficiency. Then I was tested for more and it turns out that some of my IgGs are also very very low.
I am also one of us who has mast cell/histamine issues. I am practically normal when I take an Allegra in the morning and a Benadryl at night. ... of course that is after 6 months of Entocort and an elimination diet.
This all takes time to figure out, but I truly believe that the diet is key. Stay away from fiber ( beans, legumes,raw fruits and veggies). NO gluten, dairy, or soy.
ANd give it time to work.It takes months. Be patient.
Good luck
leah