2008 will be remembered by multiple trips to the bathroom, fatigue, abdominal bloating, cramping, "brain fog", etc.
Finally went to the Dr. in Dec. 2008 and the bloodwork confirmed I had Celiac Disease. I went GF relatively soon after and felt somewhat better, but understand my intestine is shot and I have a lot of healing to do.
Went in for an upper and lower scope in early March to confirm Celiac, and make sure there was nothing else going on. Celiac was in fact confirmed (scarring could be seen with the scope, didn't even need the biopsy to confirm, although he did). Also was diagnosed with lymphocytic colitis.
My follow-up with my Dr. isn't until next week and my head is spinning.....
He wanted me to start on Asacol right away (2 pills, twice a day). Honestly, I've had to go to the bathroom MORE since starting the Asacol. Not entirely sure what it is supposed to be doing anyway (I read their website - reduce inflammation to the colon.....).
Now I don't know what was/is making me feel sick. The Celiac, or the LC? Or both? Do they come as a "package"? If I get the Celiac under control, will the LC follow suit?
Can anyone help me make sense of this?
(Sorry if this has been asked before....I simply don't have the energy to search for it!)
Celiac and LC - Help me make sense of it!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Wendy,
Welcome to our online family. I'm sorry that you've been hit with all this at the same time, because either disease by itself is overwhelming enough.
Asacol is one of the older meds used for IBDs, (Inflammatory Bowel Diseases), and it is a member of a family of drugs known as 5-ASA meds. They are based on mesalazine, which is a derivative of salicylic acid. Since salicylic acid is the active ingredient in aspirin, and all of the NSAIDs, (including aspirin, have been documented to cause MC, for many patients), your observation may be correct - IOW, the Asacol could possibly be making your symptoms worse. Asacol also contains lactose, and many/most of us are intolerant of all dairy products.
A much better choice of meds would be Entocort EC, which is a corticosteroid, but it is encapsulated, so that it is not activated until it reaches the lower third of the small intestine, and the colon, so only 10 to 15 % of it ever enters the bloodstream. Therefore, it has far fewer side effects than conventional corticosteroids, and it is quite effective for treating MC. Many members here have had good results with it.
Actually, you don't have to take a med, unless you prefer to, because MC can be controlled by diet alone, (though I'll bet your GI doc didn't realize that when he wrote the prescription for Asacol).
MC and Celiac don't always come as a package, but they seem to be diagnosed together more often these days. More and more of our members here have dual diagnoses. Possibly GI docs are just beginning to do a better job of looking for both of them. The only way to diagnose MC is by analyzing biopsy samples from the colon, under a microscope. The reason why MC and celiac disease have so much in common, is because they both are connected with gluten-sensitivity, though many GI docs still have not figured out the gluten connection for MC.
Basically, MC is much more difficult to control than celiac disease, (because it usually involves more food intolerances, and the inflammation can be difficult to control). (Again, most GI docs are not aware of this connection with food intolerances, and most of them will argue that it has nothing to do with MC, but they are wrong). Therefore, controlling the MC will generally control the celiac sprue, also. Many/most of us are also intolerant of casein, (the primary protein in dairy products), and soya, (the protein in soy beans), in addition to gluten. Some of us are also intolerant to various other food proteins, as well.
Since a GF diet will be necessary to treat the sprue, anyway, in the long run, you might as well control your MC symptoms by diet alone, also, but in the short run, the Entocort will allow you to achieve remission faster, so that you will be much more comfortable while you are waiting for the diet to take effect, (and while you're fine-tuning your diet, in the event that you have other dietary intolerances).
Please feel free to ask anything. MC is a very humbling, and life-altering disease, until you can get the symptoms under control. We can help you work out the details of a treatment plan that will allow you to get your life back. We learn what works, and what doesn't work, by sharing experiences here.
Again, welcome aboard.
Tex (Wayne)
Welcome to our online family. I'm sorry that you've been hit with all this at the same time, because either disease by itself is overwhelming enough.
Asacol is one of the older meds used for IBDs, (Inflammatory Bowel Diseases), and it is a member of a family of drugs known as 5-ASA meds. They are based on mesalazine, which is a derivative of salicylic acid. Since salicylic acid is the active ingredient in aspirin, and all of the NSAIDs, (including aspirin, have been documented to cause MC, for many patients), your observation may be correct - IOW, the Asacol could possibly be making your symptoms worse. Asacol also contains lactose, and many/most of us are intolerant of all dairy products.
A much better choice of meds would be Entocort EC, which is a corticosteroid, but it is encapsulated, so that it is not activated until it reaches the lower third of the small intestine, and the colon, so only 10 to 15 % of it ever enters the bloodstream. Therefore, it has far fewer side effects than conventional corticosteroids, and it is quite effective for treating MC. Many members here have had good results with it.
Actually, you don't have to take a med, unless you prefer to, because MC can be controlled by diet alone, (though I'll bet your GI doc didn't realize that when he wrote the prescription for Asacol).
MC and Celiac don't always come as a package, but they seem to be diagnosed together more often these days. More and more of our members here have dual diagnoses. Possibly GI docs are just beginning to do a better job of looking for both of them. The only way to diagnose MC is by analyzing biopsy samples from the colon, under a microscope. The reason why MC and celiac disease have so much in common, is because they both are connected with gluten-sensitivity, though many GI docs still have not figured out the gluten connection for MC.
Basically, MC is much more difficult to control than celiac disease, (because it usually involves more food intolerances, and the inflammation can be difficult to control). (Again, most GI docs are not aware of this connection with food intolerances, and most of them will argue that it has nothing to do with MC, but they are wrong). Therefore, controlling the MC will generally control the celiac sprue, also. Many/most of us are also intolerant of casein, (the primary protein in dairy products), and soya, (the protein in soy beans), in addition to gluten. Some of us are also intolerant to various other food proteins, as well.
Since a GF diet will be necessary to treat the sprue, anyway, in the long run, you might as well control your MC symptoms by diet alone, also, but in the short run, the Entocort will allow you to achieve remission faster, so that you will be much more comfortable while you are waiting for the diet to take effect, (and while you're fine-tuning your diet, in the event that you have other dietary intolerances).
Please feel free to ask anything. MC is a very humbling, and life-altering disease, until you can get the symptoms under control. We can help you work out the details of a treatment plan that will allow you to get your life back. We learn what works, and what doesn't work, by sharing experiences here.
Again, welcome aboard.
Tex (Wayne)
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 Wendy, and 
Tex has given you a pretty good overview of things, and hopefully now you know what is causing your problems you are on the road to mending.
MC and Celiac are both inconvenient and frustrating conditions. Feel free to ask lots of questions or just have a moan if that is what is needed. Remember everyone here has similar bathroom issues, and are pretty open in discussing topics that our other friends consider taboo.
Lyn
Tex has given you a pretty good overview of things, and hopefully now you know what is causing your problems you are on the road to mending.
MC and Celiac are both inconvenient and frustrating conditions. Feel free to ask lots of questions or just have a moan if that is what is needed. Remember everyone here has similar bathroom issues, and are pretty open in discussing topics that our other friends consider taboo.
Lyn
Wendy Although I'm really sorry you even needed to look for us. Sounds like you have really been through quite a lot already and I'm sure you feel like you are in the middle of a battle and losing right now. Things should improve soon. You do at least know what you are fighting now.
Hang in there and I do hope your Doctor will consider writing you a prescription for Entocort. I wouldn't hesitate to take that again if I needed it. Since you are Celiac you know you have no choice about the gluten free diet. It's not worth trying to play around with that.
I hope you realize you can talk about or ask anything on this site. We are pretty hard to shock here because we have already shocked ourselves. HaHa
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi, Wendy!
I also have LC and Celiac. I was diagnosed with both last summer. Tex is right on with everything he said about how your GI probably does not understand the relationship between MC and food intolerances. We who have experienced it know better.
If your GI is anything like mine, he will regard the celiac as the "major" problem and the MC as a "minor" issue. This is totally wrong. Most celiacs are able to control their disease with the GF diet alone, but as Tex said, MC is much more difficult to get under control.
I know that it is frustrating to get two diagnoses at once, but to tell the truth, I hardly ever think about the celiac anymore. The treatment for both (GF diet) is the same, so in treating the MC with a GF diet, I am also treating the celiac. Does that make sense?
Did your GI do a genetic test for celiac genes? If so, you may want to share your results on the board. I think some people have had an easier time figuring out intolerances by doing so.
Read as much as you can, and don't be afraid to ask questions!
Courtney
I also have LC and Celiac. I was diagnosed with both last summer. Tex is right on with everything he said about how your GI probably does not understand the relationship between MC and food intolerances. We who have experienced it know better.
If your GI is anything like mine, he will regard the celiac as the "major" problem and the MC as a "minor" issue. This is totally wrong. Most celiacs are able to control their disease with the GF diet alone, but as Tex said, MC is much more difficult to get under control.
I know that it is frustrating to get two diagnoses at once, but to tell the truth, I hardly ever think about the celiac anymore. The treatment for both (GF diet) is the same, so in treating the MC with a GF diet, I am also treating the celiac. Does that make sense?
Did your GI do a genetic test for celiac genes? If so, you may want to share your results on the board. I think some people have had an easier time figuring out intolerances by doing so.
Read as much as you can, and don't be afraid to ask questions!
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Thanks all for the warm welcome! 
Thanks for all of your responses. I don't totally understand the MC yet, except to know that the Asacol seems to be making me feel worse. By going GF (about mid-January I started doing a respectable job), I was slowly feeling better - I'd say about 50-60% better. Now, since I've started the Asacol I feel like I've taken a step back. I put a call into the GI today, waiting for a call back.
As far as test results, the bloodwork was:
TIS TRANSGLUT AB,IgA: 89.9 (Taken when on Gluten, first test that confirmed Celiac)
ENDOMYSIAL ABS, IgA: Titer 1:160 (Positive) (This was tested after being GF for 6 weeks)
DEAM.GLIADIN AB,IgA: 16.1 (Also tested after being GF for 6 weeks)
DEAM.GLIADIN AB,IgG: 17.8 (Also tested after being GF for 6 weeks)
With the EGD, the Dr. could see scarring in my small intestine with the scope. Biopsy confirmed celiac.
With the colonoscopy, Dr. reported everything looked OK, but he took samples for biopsy. Biopsy confirmed LC.
Also said that my stomach was red and irritated; he put me on Prilosec.
I did not have the genetic test for Celiac.
To complicate matters, I have a 4 year old and a 2 year old.....so my energies are very split these days! Yes - they will be tested soon....
I guess the biggest thing I don't understand right now is if the Celiac and the LC have anything to do with each other. Did the Celiac cause the LC, or vice versa? By going GF I should be able to handle both? If I countinue to have bouts with the big D, I need to start looking at other foods as irritants?
So many questions.... I wish my follow-up with my GI was a little sooner!
Thanks for all of your responses. I don't totally understand the MC yet, except to know that the Asacol seems to be making me feel worse. By going GF (about mid-January I started doing a respectable job), I was slowly feeling better - I'd say about 50-60% better. Now, since I've started the Asacol I feel like I've taken a step back. I put a call into the GI today, waiting for a call back.
As far as test results, the bloodwork was:
TIS TRANSGLUT AB,IgA: 89.9 (Taken when on Gluten, first test that confirmed Celiac)
ENDOMYSIAL ABS, IgA: Titer 1:160 (Positive) (This was tested after being GF for 6 weeks)
DEAM.GLIADIN AB,IgA: 16.1 (Also tested after being GF for 6 weeks)
DEAM.GLIADIN AB,IgG: 17.8 (Also tested after being GF for 6 weeks)
With the EGD, the Dr. could see scarring in my small intestine with the scope. Biopsy confirmed celiac.
With the colonoscopy, Dr. reported everything looked OK, but he took samples for biopsy. Biopsy confirmed LC.
Also said that my stomach was red and irritated; he put me on Prilosec.
I did not have the genetic test for Celiac.
To complicate matters, I have a 4 year old and a 2 year old.....so my energies are very split these days! Yes - they will be tested soon....
I guess the biggest thing I don't understand right now is if the Celiac and the LC have anything to do with each other. Did the Celiac cause the LC, or vice versa? By going GF I should be able to handle both? If I countinue to have bouts with the big D, I need to start looking at other foods as irritants?
So many questions.... I wish my follow-up with my GI was a little sooner!
DX - Celiac 12/08
DX - MC 3/09
DX - MC 3/09
Both diseases can be initiated individually, so it's difficult to say which occurred first in your case. Untreated MC can lead to celiac disease, (IOW, as the gluten sensitivity increases, due to continuing to eat gluten, celiac disease can be triggered), and untreated celiac disease can lead to MC, (due to the inflammatory nature of the fecal stream, when digestion becomes corrupted).Wendy wrote:I guess the biggest thing I don't understand right now is if the Celiac and the LC have anything to do with each other. Did the Celiac cause the LC, or vice versa? By going GF I should be able to handle both? If I countinue to have bouts with the big D, I need to start looking at other foods as irritants?
Totally avoiding gluten is indicated for both diseases, though with MC, additional food intolerances often have to also be eliminated from the diet. If you read any of the celiac forums, you will note that many celiacs also claim to have other food intolerances. IMO, (and Dr. Fine's research verifies this), those celiacs are very likely to also have undiagnosed microscopic colitis, which is causing those other food intolerances.
Many medications can cause MC. NSAIDs are probably the worst, but certain protein pump inhibitors, (PPIs), selective seratonin reuptake inhibitors, (SSRIs), some of the H-2 blockers, (such as Zantac), and various other meds, have been shown to trigger MC. Prilosec is a PPI, of course, so if I were in your shoes, I would stop taking both the Asacol and the Prilosec. There's certainly no way of knowing whether or not Prilosec might trigger MC for you - you simply have to determine that by discontinuing all those meds for maybe a week, and watching to see if your symptoms get better, or worse. Eliminating one or both of those meds might put you in remission. If not, then you may need to start eliminating other foods, such as dairy products, and products containing soy.
Gastritis, (the cause of your stomach inflammation), is quite common with MC, and it will usually resolve, when the other symptoms of MC are eliminated. Be aware that your GI doc will probably insist that it is safe for you to take the Asacol, and/or the Prilosec. If he does, then you will have to decide whether you prefer to follow his advice, or you would rather get your life back. All of us here have had to make that decision, though we are usually able to compromise, and follow some of our GI doc's acvice, while ignoring other parts. Knowing which is which, is the trick, of course, and hopefully, you will be able to learn that by reading here, and asking questions.
The thing to remember is that once you have LC, the celiac sprue becomes secondary, because it will resolve on a GF diet, (IOW, refractory cases of celiac sprue, where the diet doesn't control the symptoms, are almost always due to the undiagnosed presence of MC). The LC may require more than just a GF diet, and it takes longer to resolve, but it can definitely be controlled, with the proper treatment.
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.
Update on your update:
Do yourself a favor and stop taking the Asacol. It is not only redundant, if you are going to take Entocort, but it may be what is causing your D at the moment. The Entocort can do anything the Asacol can do, and so much more, but if you are reacting to the Asacol, then it can prevent the Entocort from controlling your symptoms.
It's always a good idea to check for C. diff, if your symptoms are especially bad. Since you appear to have Gastritis, they should have checked for H. phlori, when they did the "upper" endoscopy exam. I'm guessing, though, that the doctor failed to take biopsy samples from the stomach. A breath test can be used to look for H. pylori, but the most reliable method is the examination of biopsy samples, (from the stomach, not the small intestine).
Regardless of what you choose to do, please remember that we will support your decisions, and try to help you in any way we can.
Tex
Do yourself a favor and stop taking the Asacol. It is not only redundant, if you are going to take Entocort, but it may be what is causing your D at the moment. The Entocort can do anything the Asacol can do, and so much more, but if you are reacting to the Asacol, then it can prevent the Entocort from controlling your symptoms.
It's always a good idea to check for C. diff, if your symptoms are especially bad. Since you appear to have Gastritis, they should have checked for H. phlori, when they did the "upper" endoscopy exam. I'm guessing, though, that the doctor failed to take biopsy samples from the stomach. A breath test can be used to look for H. pylori, but the most reliable method is the examination of biopsy samples, (from the stomach, not the small intestine).
Regardless of what you choose to do, please remember that we will support your decisions, and try to help you in any way we can.
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.
Thank you so much, Tex. Your most recent comments have really helped me to make heads and tails of this. Sort of a "chicken or egg" question, isn't it. I have contemplated stopping the Prilosec - throughout all of this mess, my stomach hasn't really been treating me too badly!
Can anyone explain to me in layman's term what the LC is? I understand it is a concentration of lymphocytic cells (a specialized type of white blood cells) in the lining of the colon. I don't know what put them there?
Can anyone explain to me in layman's term what the LC is? I understand it is a concentration of lymphocytic cells (a specialized type of white blood cells) in the lining of the colon. I don't know what put them there?
DX - Celiac 12/08
DX - MC 3/09
DX - MC 3/09
OK, so one more question.....
I have terrible breath. Tongue is constantly coated with a yellow film.
I talked to my Dentist (pre- any of this stuff) and he said that coffee/soda/etc can stain the tongue. He gave me a tongue scraper, and told me to brush my tongue regularly.
I talked to my primary care Dr. and he admitted he didn't know (which I appreciate his honesty).
I talked to the GI and he said it was due to the malabsorption of vitamin's K and B (I think, maybe i got that wrong). He said it would get better as the Celiac got better.
I brush and scrape my tonge twice a day....I'm so self-concious of this.
Anyone know anything about this?
I have terrible breath. Tongue is constantly coated with a yellow film.
I talked to my Dentist (pre- any of this stuff) and he said that coffee/soda/etc can stain the tongue. He gave me a tongue scraper, and told me to brush my tongue regularly.
I talked to my primary care Dr. and he admitted he didn't know (which I appreciate his honesty).
I talked to the GI and he said it was due to the malabsorption of vitamin's K and B (I think, maybe i got that wrong). He said it would get better as the Celiac got better.
I brush and scrape my tonge twice a day....I'm so self-concious of this.
Anyone know anything about this?
DX - Celiac 12/08
DX - MC 3/09
DX - MC 3/09
Wendy,
The medical description of lymphocytic colitis, (in so many words), is an increased infiltration of lymphocytes, (IOW, an increased presence, because some are always there), between the cells of the mucosa, (the upper layer of the epithelia), of the colon. These are T-cells, which are inflammatory, and this is what makes LC an inflammatory bowel disease, (by definition).
Your tongue coating sounds like thrush, which is a sign of a possible yeast overgrowth, (candida albicans), in your GI system. Most doctors don't have a clue about yeast overgrowth, and many deny that it can even be a problem, but it can definitely cause serious problems, and may well be the reason why many of us developed the leaky gut syndrome which could have initially caused us to develop MC, (or LC, or CC), in the first place.
I've got to get back to work, but if you do some "googling", you should be able to find information, and a list of symptoms of yeast overgrowth, or candida overgrowth. If you need help finding a good reference, please bring it to my attention when I return tonight, or maybe someone else can help.
Tex
The medical description of lymphocytic colitis, (in so many words), is an increased infiltration of lymphocytes, (IOW, an increased presence, because some are always there), between the cells of the mucosa, (the upper layer of the epithelia), of the colon. These are T-cells, which are inflammatory, and this is what makes LC an inflammatory bowel disease, (by definition).
Your tongue coating sounds like thrush, which is a sign of a possible yeast overgrowth, (candida albicans), in your GI system. Most doctors don't have a clue about yeast overgrowth, and many deny that it can even be a problem, but it can definitely cause serious problems, and may well be the reason why many of us developed the leaky gut syndrome which could have initially caused us to develop MC, (or LC, or CC), in the first place.
I've got to get back to work, but if you do some "googling", you should be able to find information, and a list of symptoms of yeast overgrowth, or candida overgrowth. If you need help finding a good reference, please bring it to my attention when I return tonight, or maybe someone else can help.
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.
Coating comes off and leaves a regular tongue behind!
I just tried brushing my tongue with H2O2, and my tongue foamed up like crazy. Actually felt pretty good.... It has generally seemed a little better since going GF, but I suppose like everything else, I just need to have patience....
I just tried brushing my tongue with H2O2, and my tongue foamed up like crazy. Actually felt pretty good.... It has generally seemed a little better since going GF, but I suppose like everything else, I just need to have patience....
DX - Celiac 12/08
DX - MC 3/09
DX - MC 3/09
Wendy,
Many things can cause bad breath, but one of them is yeast. Here's a quote about the thrush part of a candida overgrowth:
http://www.naturalhealthforme.com/Candida.htm
The red emphasis is mine, of course, in the above quote. If your tongue is not painful, after removing the coating, it may be a minor issue, which may resolve on it's own, as the diet takes effect. Yeast thrives on white bread, sugar, and alcohol in the diet. If you use a minimum amount of sugar and alcohol, (and you have already removed wheat bread from your diet), then even if you do have a candida problem, it may slowly fade away, over time. Yeast is always present in the body, it's just when it overgrows, that it becomes a problem.
Tex
Many things can cause bad breath, but one of them is yeast. Here's a quote about the thrush part of a candida overgrowth:
Also, there is a spit test at this site, that you can try, if you're curious about yeast.In the mouth, it's overgrowth is called "thrush". It causes a heavy white coating on the tongue as well as white spots on the gums, the sides of the mouth or the corners of the mouth. It can look fuzzy or like cotton and is painful. A green, yellow or white coating on the tongue may also come from a sinus infection or allergy and that may involve Candida.
http://www.naturalhealthforme.com/Candida.htm
The red emphasis is mine, of course, in the above quote. If your tongue is not painful, after removing the coating, it may be a minor issue, which may resolve on it's own, as the diet takes effect. Yeast thrives on white bread, sugar, and alcohol in the diet. If you use a minimum amount of sugar and alcohol, (and you have already removed wheat bread from your diet), then even if you do have a candida problem, it may slowly fade away, over time. Yeast is always present in the body, it's just when it overgrows, that it becomes a problem.
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.