Another newbie with LC diagnosis

[carolm]

Hello to all,
Like all other newbies I am thankful for this website. There is a great deal of practical and research based info on MC here that I have not found at other sites. So thank you.

I received a diagnosis of LC about 4 weeks ago. My general practitioner prescribed Prednisone for 3 weeks, titrating down. I did well and in fact reached the point where I felt as well as I did before I had my first flare up, and was finally able to get off of the BRAT diet. But 48 hours off Prednisone and I had another flare up. The pattern for me is intense nausea in the morning, often as soon as I wake up, that lessens as the day goes on. I also have the gas, bloating, cramping, etc that others describe. The nausea is so intense it is absolutely debilitating. It's led to dehydration, eating only a few hundred calories a day, then I get dizzy as a result. As you know this can go on for days and greatly interferes with all aspects of life. My doc tried me on Sulfasalazine following the 2nd flare up but the side effects are worse than the colitis itself. Now I'm back on both Prednisone and Sulfasalazine, until I see the specialist next week.

My question to you is: what else would you recommend I do to tackle the LC and help myself and my doctors get this managed? I've read up on the elimination diet and decided this would definitely be worth doing. I do have other allergies, seasonal type, and a family history of autoimmune conditions so it's not inconceivable that I could have food sensitivities. What else would you suggest? The only thing consistent about my LC is it's inconsistency.

Also, I have a long list of questions for the specialist, but given your experience what do you think would be critical for me ask?

thanks so much,
Carol

[tex]

Hi Carol,

Welcome to the board. I had the same problem with nausea when I was reacting, and it would often improve, later in the day, especially if vomiting was part of the deal.

Here's the way MC works: For most of us, the inflammation is caused by either a drug we're taking, or certain foods, primarily gluten, dairy, and soy. Most of us are sensitive to gluten and dairy, and about half of us are sensitive to soy. Some of us have other sensitivities, such as eggs, yeast, corn, etc. Antiflammatory drugs help to suppress the inflammation, but they can't prevent it from redeveloping, so long as we continue to eat the foods that are causing the problem.

For those whose MC is drug-induced, discontinuing the drug that's causing the problem will usually bring remission, and avoiding it forever will often bring permanent remission. Drugs shown to be associated with triggering MC include, (but are not limited to), NSAIDs, PPIs, SSRIs, statins, bisphosphonates, beta blockers, etc. Not all of them trigger MC for everyone, of course, but they are documented to have caused the disease for some individuals.

For the rest of us, we have to figure out which foods to avoid, so that our gut can heal. If you're going to take a drug, Entocort is a much better choice than prednisone. It's not nearly as likely to cause side effects, and you can take it much longer, without undue health risks. It's just as effective as prednisone, for most of us. The downside is that it's much more expensive than prednisone, so if you don't have good insurance, it can be prohibitively expensive, (unless you order it from a foreign pharmacy, to avoid the exorbitant domestic prices). It takes a while for the diet to bring remission, so taking Entocort for several months will help to control your symptoms while your gut is healing due to the diet. Contrary to what most GI docs believe, antiflammatory drugs will not heal the gut, (in fact, corticosteroids are known to retard healing) - they can only suppress the symptoms, and no matter how long you take them, soon after you discontinue taking them, your symptoms will relapse, unless you are following the proper diet. That's it in a nutshell.

This a complex disease, and you're correct - it affects all of us somewhat differently. Some of us have debilitating pain, some have virtually no pain. Some have nausea, some don't. And we all respond to treatment differently. I really don't have any suggestions on what to ask your doctor, because most GI specialists don't understand this disease very well, and most of them don't have the foggiest idea how to properly treat it. Most of them will argue that diet has nothing to do with MC, which is obviously incorrect, since many of us here, (including myself), are in remission by diet changes alone. Most others use a combination of drugs and diet, and a few use drugs alone. Most of us, though, find it necessary to alter our diet, if we are to completely eliminate our symptoms.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[carolm]

Tex, Thank you for your quick response and the information on LC. I have a couple of other questions before I decide what to do next.

If I do the Elimination diet now, while I'm taking Prednisone, will the Prednisone mask my reaction/symptoms when I reintroduce foods?

Also, If I'm leaning toward getting the Enterolab testing for gluten intolerance (and maybe other things) would it make more sense to do that first then my diet changes can be more specific? I have not eaten any dairy since I became sick in June. I just have this weird "instinct' that if I do it will be problematic. Gluten I'm not sure about.

Again, thanks for your help and advice. My goal is to be like many others on this site--in remission and managing on diet alone. In fact, you've given me real hope that this is manageable and will not run my life the way it has for the past 2 months.

Carol

[tex]

If I do the Elimination diet now, while I'm taking Prednisone, will the Prednisone mask my reaction/symptoms when I reintroduce foods?

Yes, if you're still taking prednisone at the time, it's usually capable of masking symptoms for most people, though not necessarily everyone.

Also, If I'm leaning toward getting the Enterolab testing for gluten intolerance (and maybe other things) would it make more sense to do that first then my diet changes can be more specific? I have not eaten any dairy since I became sick in June. I just have this weird "instinct' that if I do it will be problematic. Gluten I'm not sure about.

Virtually everyone who has enteritis, (intestinal inflammation of any kind), will be lactose intolerant, until the inflammation subsides, so that the small intestine can resume production of lactase enzyme. This happens even with the flu, parasites, bacterial infection, or whatever. That's not an autoimmune reaction, however - that's simply poor digestion due to the temporary loss of the lactase enzyme. Most of us who are sensitive to gluten, are also sensitive to casein, the primary protein in all dairy products, and casein-sensitivity will not go away - it's virtually always permanent, similar to gluten-sensitivity.

Under normal circumstances, the Enterolab tests yield very reliable results, and their gliadin test is capable of reliably detecting anti-gliadin antibodies for at least a year after gluten is totally withdrawn from the diet, because anti-gliadin antibodies have a very long half-life, compared with other food antibodies, (roughly 20 times as long). However, an immune system suppressant, such as prednisone, has the potential to adversely affect the Eterolab tests, because it can suppress the production of antibodies. Entocort rarely affects their test results, (unless it has been taken over a year, at a full dosage rate, for example), because Entocort has a much lower systemic effect, when compared with the other corticosteroids, (only about 10 to 15% of the active ingredient in Entocort is absorbed into the bloodstream, due to the enteric encapsulation mechanism used by the manufacturer).

Most food sensitivities, (other than gluten), such as dairy, soy, yeast, eggs, etc., can be detected up to roughly 6 weeks, (more or less), after being withdrawn from the diet, because those antibodies have a much shorter half-life, (approximately 6 days). Therefore, a casein test would probably fail to detect a dairy sensitivity, if you've been totally avoiding it for over 2 months. There's an outside chance that the test might be able to detect it, if you had very high antibody levels before you cut it out of your diet, but you've been avoiding dairy for a relatively long time.

These are just my opinions, of course, but I believe that they are in line with what the experts at Enterolab would tell you, regarding these issues.

You're most welcome,
Tex

[carolm]

Tex,
there is no doubt in my mind that I will be angling for Entocort when I see the gastroenterologist on the 14th of this month. Everything I'm reading says it's the way to go and when I told the GI's nurse that I was currently on Prednisone (she called to get some history) she said to me "you can't be on that for very long". My GP didn't know much about Entocort when I asked her so obviously I need to be talking to someone who's seen LC. Right now I don't have a lot of confidence I can get this arrested without the help of meds. Hopefully someday....but for now I need to be able to function, work, etc.

Sounds like I need hold off on getting the Enterolab tests until the Prednisone is gone. But I can be working on getting gluten free even now. Anything to aid healing.

BTW-- I was prescribed Zocor and had been taking plenty of NSAIDs (ibuprofen) due to many sinus headaches I had this spring. Spring was an active allergy season here in Ks. So I'm taking that into consideration as a possible irritant too. After I brought up the connection my GP suggested I stop the Zocor until we can get this controlled. And I'm not taking NSAIDs anymore. I'm can't say I've seen much improvement off of Zocor but I'd prefer to not get back on it either. Why take any chances?

I'm sure I'll have more questions later but again, your advice and experience is more appreciated than I can say. I've been scanning old posts and hope I'm not asking things that are already addressed elsewhere (I probably am). Thanks for your patience too.

Carol

[tex]

Carol,

That nurse is right - if you stay on prednisone long enough, trying to break away from it can literally turn into a nightmare. We've had a member or two in that situation, and it can become a living hell.

The statins are not a "biggie" in terms of causing MC - I suspect the correlation is rather low, making it a minor risk, rather than a major risk, (the NSAIDs would be considered a major risk factor).

After you make one more post, the system will grant you some additional privileges, such as being able to search the archives. That will make searching for information on this board much easier. Never hesitate to ask questions, though - it's always better to ask first, than to suffer later.

Tex

[Gloria]

The statins are not a "biggie" in terms of causing MC - I suspect the correlation is rather low, making it a minor risk, rather than a major risk, (the NSAIDs would be considered a major risk factor).

Here's an study which compares the frequency of common drug use with MC:

Drug consumption was more frequent in lymphocytic colitis than in the control group (92.3%vs 76.3%, P < 0.05). The mean daily number of drugs by person was also higher in lymphocytic colitis (3.79 +/- 0.44 vs 2.13 +/- 0.22, P= 0.04). The following associations as compared with the control group were observed: Group 1-Consumption of NSAIDs (46.2%vs 23%, OR 2.9, 1.3-6.4), selective serotonin reuptake inhibitors (SSRIs) (18%vs 1%, OR 21, 2.5-177), specifically, sertraline (15.4%vs 0%, P < 0.0005); Group 2-SSRIs (28%vs 1%, OR 37.7, 4.7-304), beta-blockers (13 vs 3%, OR 4.79, 1.04-20), statins (13%vs 3%, OR 4.6, 1.04-20), biphosphonates (8%vs 0%, P= 0.022); Group 3-SSRIs (15%vs 1%, OR 16.2, 2-135), statins (11.5%vs 3%, OR 5.4, 1.2-24). As compared with the chronic diarrhea group, a significant association with the usage of sertraline in LC (P= 0.005) and a trend for NSAIDs in CC (P= 0.057) were found.

http://www.ncbi.nlm.nih.gov/pubmed/17100977

According to this study, NSAIDS have a pretty high correlation at 46.2%, statins are much lower at 13% and 11.5%, and biphosphonates (Fosamax) are lowest of all at 8%.

Gloria

[sarkin]

Carol,

I did test positive for dairy antibodies, via Enterolab testing, about 3 months after I stopped eating all dairy - probably that means that my levels were much higher previously than they were at the time of the test. I think you are right to suspect dairy and gluten, which are the most likely suspects and cause the worst symptoms for so many of us.

It sounds as though you have a good approach - the combination of diet and medication has been helpful for many, and even some of us who are working toward remission via diet alone have had some success starting out with a medication regimen. For me, dropping gluten and dairy brought rapid improvement, though I later discovered I needed also to eliminate eggs - those were my biggest food irritants, by far. I hope you're able to get your symptoms under control quickly - you will get a lot of help here, so please keep us posted.

--Sara

[tex]

I did test positive for dairy antibodies, via Enterolab testing, about 3 months after I stopped eating all dairy - probably that means that my levels were much higher previously than they were at the time of the test.

Now that's a perfect example of the extraordinary benefits of a discussion board such as this. That's something that we could never learn in a doctor's office, because it can only be learned by actual personal experience.

Thanks, Sara,

Love,
Tex

[sarkin]

Tex,

It occurred to me after I posted that - I should have added that I know I had untreated MC for a looong time, and though that time included a lengthy/mysterious remission, I think it's quite likely that I was a ticking bomb - someone else's dairy antibody level might be significantly lower, if their MC was triggered recently (as opposed to simmering along for years and then 'suddenly' boiling over).

So my experience may not be predictive for others - but it's probably not a unique situation, either. I am also avoiding soy, though I tested 'normal' for those antibodies, because I suspect my level of antibodies might have dropped too low to be detected at time of testing, so it might still be an issue for me; yeast, likewise - though since baked goods are out of my life, it's a pretty easy food to avoid.)

And I wholeheartedly agree, this is an extraordinary resource, with amazing benefits. I truly believe this forum saved me from months of suffering and wandering in circles. Carol - I couldn't bear the idea of starting down the elimination path, one food at a time, and not feeling better, so I cut all dairy, gluten, almost all grains, and legums all at once, and am so glad I did. (Eggs came later.)

I would here like to throw in my unsolicited opinion that very, very few women benefit from statin drugs, according to the research, and very few doctors realize this. Nice for the pharma companies - not so nice for our health... so of course you should not take medical advice from a stranger, but I am glad you're off the Zocor!

Love,
Sara

[carolm]

As Tex said, the personal experiences are what's relevant here. Sara I appreciate your post and Gloria thanks for the study. I had tried to find the actual study a few weeks ago but with no luck. The Zocor did work well, better than the 3 years I spent trying to lower it with diet and exercise alone. It would be nice if I didn't have to give it up. It worked and I had no side effects.

I have no other health problems and the LC has been a big jolt to me. The quality of my life diminished rapidly in July and I even had to question whether I could work full time- certainly some days I couldn't. I know partly what I'm dealing with is grief, frankly. It's tough not knowing there is a predictable course of treatment or a sense of how LC will progress. That's the hardest part for me at this point.

I will keep posting and reading...

thanks again,
wishing you well.
Carol

[carolm]

Sara, you posted while I was typing and I didn't see your message, My theory on why the Zocor did work was because I had spent 3 years eating no red meat and enough oatmeal to choke a horse and I did the Couch to 5k program. So once Zocor was introduced, i was already in shape. Maybe it just tipped the scales. Any way, maybe I won't need it. Sound like another question for me and the gastro doc to toss around. Or followup blood tests to see if my cholesterol rises. At any rate, at the moment it is the least of my worries.

thanks so much for your time and your input.
Carol

[JLH]

Link no longer working........

Signs & Symptoms of Magnesium Deficiency:
Poor immune function
Bone Loss
Muscle pain and muscle twitching
Depression
High Blood Pressure
Increase cholesterol
Hypoglycemia or other blood sugar problems
Fatigue
Thyroid Disease

WOW, I think I may have discovered why I am no longer in need of cholesterol meds after taking Lipitor and Pravastatin for years and years and years.