'morning' sickness

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beckyp
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'morning' sickness

Post by beckyp »

I have recently been diagnosed with LC after an illness of only 2 mths so consider myself lucky. I also suffer from Hypothyroidism dx 2004, SVT dx 2009, Adenomyosis dx 2010. I have been taking Asacol 800 mcg x 3 daily which made me worse initially. My doc has now added Lansoprazole which is helping with the pain I was experiencing. Diarrhoea is still the same but I have only been on Asacol for 2.5 weeks so am unsure how long it takes to be effective. As I react badly to Ibuprofen I am concerned the Asacol isn't the best thing for me. I have tested negative for Coeliac Disease, but my mum has it. The question I have is that in the morning I feel really nauseous and hot for a couple of hours, sometimes so bad that I have to lay down for a while before I go to work. I have just started a new job and am really worried the effect the LC will have on my work. Is this sickness a symptom of the LC and is there anything I can take for it?
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tex
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Post by tex »

Hi Becky,

Welcome to the board. Yes, when I was still reacting, I had the same problems with nausea, and various other symptoms that were usually worse in the mornings, and somewhat better later in the day. Among many other symptoms, LC can cause extreme fatigue and brain fog for some people who have the disease.

Please be aware that the blood tests are worthless for detecting the type of gluten-sensitivity that we have - except for those of us who also have celiac disease, we always test negative to those blood tests, and yet almost all of us are very, very sensitive to gluten. The antibodies to gluten are produced in the intestines, not in the blood. Stool tests can detect those antibodies several years before enough of them show up in the blood to yield a positive test for celiac disease.The blood tests will only detect mature celiac disease. The only lab that offers stool tests for food-sensitivities that are accurate and reliable, is in Dallas, TX - they hold the patents on those tests, so no one else can use them. Here's a link, if you are interested:

http://www.enterolab.com/StaticPages/TestInfo.aspx

Please be aware that many gastroenterologists actually know very little about successfully treating LC. For example, it has been known for almost 10 years now, that Lansoprazole can cause LC or CC for many people.
During 1997, approximately 850 veterans at our institution had their proton pump inhibitor converted from omeprazole to lansoprazole because of a formulary change. A number of patients subsequently developed chronic watery diarrhea. While evaluating six of these patients, we discovered microscopic colitis that resolved with discontinuation of lansoprazole.
http://www.ncbi.nlm.nih.gov/pubmed/1242 ... t=Abstract

To make matters worse, for anyone who is sensitive to salicylic acid-based medications, commonly known as non-steroidal anti-inflammatory drugs, (NSAIDs), any of the drugs based on mesalamine, (5-aminosalicylic acid, 5-ASA), will probably cause them to react in the same way that they react to NSAIDs. IOW, the drugs will make the inflammation, (and the symptoms), worse. Asacol is included in that group of drugs, of course.
Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.
http://www.nejm.org/doi/full/10.1056/NE ... 3263381320

A doctor should never prescribe Asacol for someone who reacts adversely to any NSAID.

The right medications can help, but we have found that the proper diet changes are the best way to treat the disease, (and the safest way, as well). For some people, the medications won't relieve their symptoms unless they make the diet changes, because as long as we eat foods that cause inflammation, the production of additional inflammation is always one step ahead of the drugs.

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

Tex
:cowboy:

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.
beckyp
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Post by beckyp »

Hi

Thanks for the quick response

I have had a look at the link for Enterolab, but am unable to justify the expense at the moment. I was made redundant at the end of July and have only just got back into full time employment. I was considering the elimination diet but not sure I have the willpower to eat what's recommended for 2 weeks. Although I think I'd change my mind if my symptoms were still as bad as they were originally. I will try gluten free foods for a few weeks instead and see how I get on.

My consultant is referring me to another gastroentrologist for follow up so will speak to them about the effect of the Asacol.

Also I believe the majority of people are older than me when they are diagnosed (I'm 41) and I wondered how many of your members are below the average age and if that's significant at all?

Once again, thanks for your help

:smile:
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Post by sarkin »

Becky,

I think they used to diagnose only 'older' people because they only did the biopsies on people who fit the profile... so they only FOUND people who fit the profile.

I was also 41 when diagnosed, and we have many members much younger - including a little girl who just celebrated her 5th birthday!

It takes some planning (and yes, willpower) to drop all gluten and dairy, without some 'proof' - I agree with you, awful symptoms can be a powerful motivator. I inadvertently proved to myself how sick both gluten and dairy make me, so was persuaded. I later did the Enterolab testing, which confirmed it, but it is not necessary.

And since your mother has coeliac/celiac (as we call it over here), your chances of being gluten-intolerant are very high. If GF doesn't do it, you could drop all dairy as well (not just lactose - it's the protein, casein, that we react to as we do to gluten). I think it's easier to cut them out together (sometimes the hard road is the easier path - go figure). I was pretty desperate to feel better fast.

It's hard to say for sure what your triggers might have been - as you may know, many people go undiagnosed with celiac/coeliac disease for many years (10-11 years!), because they use tests that only come up positive when a great deal of damage is done to the small intestine. I have a celiac gene, as does Tex (and quite a few of us, but by no means all), and perhaps that increases the chances of LC being triggered younger, by some combination of a pathogen, or a medication, extra stress, or just plain luck. What seems clear is that once the gluten intolerance gets switched "on" it does not switch back "off" again, even with significant and lengthy healing.

Hope this is helpful. I was also told at the time that I was young for my diagnosis. It's possible your hypothyroidism also has a gluten connection... that is a big red flag. I don't know enough about your other diagnoses to understand whether they might have an autoimmune component.

Feel better, and let us know how we can help,
Sara

p.s. I took Asacol originally, many years ago - I think it neither helped nor hurt, in the end. It sounds as though it's really not agreeing with you - and I think anything that sets you back rather than helping you forward is to be questioned, as you are doing. Good for you.
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tex
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Post by tex »

Becky,

You can certainly treat your disease without ordering any tests. You simply have to do a careful elimination diet, and stick with it long enough to get results.

Until the last 2 or 3 years, most gastroenterologists considered this disease to be rare, so they never looked for it. You can't find MC if you don't look for it. The only way to diagnose it is to take biopsy samples from the colon, and analyze them under a microscope, to look for the markers of MC. They virtually never did that for anyone considered to be "young".

During the past couple of years or so, some GI docs have learned to take biopsies as a matter of routine, when scoping someone to locate the cause of diarrhea, regardless of the patient's age, (of course, a few doctors still haven't learned to do that, so they continue to miss a lot of cases of MC).

During the past year or so, I would estimate that roughly half our new members are younger than 50 years of age. Our youngest member was 2 and a half years of age, when she was diagnosed, (of course, actually, her mother joined the board on her behalf). The mother promptly changed her daughter's diet, to exclude gluten, dairy, and soy, and within a few weeks, she was in remission. She is now 5, I believe, and doing well, on her diet, with no more symptoms, (unless some adult makes a mistake, and gives her a food item that she shouldn't be eating). We have many members in their 20s and 30s. The diagnostic rate depends on how willing the gastroenterologists are to do colonoscopy exams, and take biopsy samples during the exam. If they do that, the diagnosis is almost always MC. If they fail to take biopsies, the diagnosis is almost always IBS. It's that simple.

You're most welcome,
Tex

P. S. I see that Sara has just posted some of the same information that I mentioned, but I don't have time to edit my post, so please pardon any redundancy.
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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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Post by Zizzle »

Tex is right. IBS is at epidemic proportions among the 45 and under crowd. Medical guidelines in the US say colonoscopies with biopsies are not warranted in many cases, so everyone suffers trying to figure out how to deal with their IBS. I was diagnosed with LC at age 35, and had "IBS" for 10 years prior. I could have prevented a lot of grief by starting the GF/DF diet much sooner.
beckyp
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Possible Misdiagnosis

Post by beckyp »

Hi again
:smile:

I have been thinking about the diagnosis of IBS I was given 18 yrs ago. I have suffered with chronic D and bloating in all that time, but assumed that as my recent illness was so much worse that it was a different thing altogether. It seems now that maybe it wasn't. Is it possible that I had a mild form of LC all that time? Can LC suddenly take on a much worse form? The first sign I had that all was not well in June was a seriously embarrassing and humiliating bowel accident at work

I also have episodes of extreme V&D (every 10 mins or so) approximately twice a year that last for around 18 hours that can't even be stopped with an injectable anti-emetic. They are labelled Gastroenteritis but nobody else in my house ever gets it, and I don't know anyone else who gets it that regularly. Is there anyone else here who has a similar problem?

Lastly, (sorry to go on :oops:) I am still taking the Asacol and things seem to have calmed down slightly now, but I have read that it can suppress your white blood cell count. Has anyone else experienced this? Is probably just a coincidence, but I had Laryngitis for 10 days about a month after starting the Asacol.

Think I'm obsessing a bit over this!!!

Thanks for all your help :smile:
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Post by Gabes-Apg »

hi there
welcome to the group

I was diagnosed aged 40 (almost 2 years ago) i have had digestion issues my whole life, IBS medically diagnosed aged 24, in this group there are people of all ages, (toddlers included)

to answer some of your thoughts/questions;

there are quite a few people that had mild IBS, and then chronic symptoms occured which lead to the MC diagnosis (some got Dx within a couple of months, some went through years of mis Dx)
I am aware of having symptoms that were not IBS, but I now know to be MC related that were occuring for at least 2 years before my Dx

Across the group are a few varying reasons as to why chronic symtoms started
- Events such as drastic hormone changes, or other illness/conditions
- highly stressful event (death of partner, close family member, loss of job etc etc)
- Certain medications

Your questions about meds / Elimination Diet etc

my tag line for mc is - "there is no right way or wrong way, there is your way"
a med that works for one person, may not work for another
a food item that is a major trigger for one person, may not cause issues for another
figuring out what works best for you, may take a bit of time, unfortunately there is no short cuts or guaranteed solution

this site is full of wonderful people that will answer your questions, and share their experiences that will help you to solve the puzzle of MC management

take care
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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draperygoddess
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Post by draperygoddess »

Hi Becky,
Welcome to the forum! This is better than any doctor, in my opinion, for finding out how to treat MC.

I am 40 and have had symptoms since I was 13 (that I remember). However, I would describe my condition as rather mild up until a few years ago. First thing in the morning has always been the worst for me. In high school I would be in the bathroom before I left for school, then be fine the rest of the day. My symptoms (abdominal pain, bloating, D) were occasional, but chronic, nuisances. About 6 years ago I was prescribed Zoloft for anxiety. Over the past 5 years my symptoms have become more frequent and progressively harder to control. I was scared to death that I would end up with D that wouldn't stop, so I went to a GI. The only reason he did a colonoscopy was my family history of colon cancer--I am too young to fit the typical MC profile. I don't have a definitive diagnosis yet, but I strongly suspect LC.

I would say your previous "IBS" and your current symptoms are definitely part of the same animal. The longer your body is under attack, the more damaged your intestines get, and it stands to reason that your symptoms would get worse too. As far as the gastroenteritis, I would suspect a trigger rather than a stomach bug. Though a virus can certainly send you down that path, the duration and severity might be due to food intolerances and/or existing damage. The last thing an already-upset system needs is a little GI bug to further irritate it! :ant:

Like virtually everyone else on the forum, I concur that figuring out any food intolerances you might have will help you get better. I'm still working on mine, but already I can see a big difference after eliminating gluten and dairy.

Best of luck to you in your quest for healthiness!
Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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tex
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Post by tex »

Hi Becky,

For some people, MC seems to start almost overnight, and for some of us, it seems to slowly develop over a period of years. In my case, for several years, I kept getting sick, over and over again. At first, it happened about once a month, and I thought that I was just having relapses of the flu. Eventually, I started getting sick more often, so I thought maybe I was just unlucky, and I was getting food poisoning, from eating at various fast-food places while making deliveries at work. But finally, one day the D started, and wouldn't stop, and it finally dawned on me that something else was going on. :roll: I had a lot of problems with nausea back in those days,also. Sometimes it led to vomiting, and sometimes it didn't.

While many of the drugs designed to suppress the immune system are known to cause a reduction in white cell counts, as far as I'm aware, Asacol, and the other mesalamine-based medications don't significantly suppress the immune system, and normally they don't cause a lowered white cell count, so you shouldn't need to be concerned about that with Asacol. I would guess that the laryngitis was probably just a coincidece. Asacol normally shouldn't lower the ability of the immune system to perform properly.

Microscopic colitis and other inflammatory bowel diseases, tend to deplete our supply of vitamin D, so most of us take a substantial vitamin D supplement. A low level of vitamin D tends to make us much more susceptible to many diseases and infections, and that may have been the reason why you had laryngitis.

Based on your history, I would guess that you already had LC back when you were originally diagnosed with IBS. If your doctors had taken biopsy samples of your colon back then, they could have correctly diagnosed it. I'm glad you're feeling better, and I hope your progress continues.

Tex
:cowboy:

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.
beckyp
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Post by beckyp »

Thank you all for your help. It's very kind of you.

When I was given my original IBS diagnosis years ago, they only did blood tests, no colonoscopy. It was only because of the severity of my symptoms, my family history of bowel cancer and the fact that my GP found a dullness on percussion of my abdomen that I was referred under the fast track cancer referral system for colonoscopy this time. Thankfully the consultant was sensible enough to take biopsies at the time or I would be going round in circles now.

I'm having a bad day today. Its flared up and I'm not sure what I did but I'm paying for it now :sad:

Once again thank you
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wow

Post by beni »

we are very alike in our list of illnesses, I had adenomyosis, I have an underactive thiroid and L.C. how strange is that, Beni
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draperygoddess
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Post by draperygoddess »

Becky,

I'm so sorry you're feeling yucky today! Hope it gets better as the day goes on.

Are you keeping a food diary yet? It really helped me to see the correlation between what I ate and my symptoms (and helped me recognize some less obvious symptoms that I overlooked, since the D was what got my attention).

Tex, is there anything significant about a low white blood cell count when you're not on medication? Mine was a little low when they did my initial bloodwork, but the doctor didn't comment on it.
Cynthia

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Post by Zizzle »

Becky,
I'm experiencing one of those nausea, V & D flares you decribed. In my case, I think it's caused by something I ate this week--twice! So stupid!! It was slightly outdated vacuum sealed smoked salmon, and it made me violently sick on Saturday too. I thought it was gluten then, but now I've made the connection. I'm always prone to whatever stomach bug is going around, and I always get traveler's diarrhea in foreign countries, despite taking every precaution. I suspect our injured intestines don't have the same resilience as healthier people's, so we succumb to smaller amounts of pathogenic bacteria in our food.
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Post by tex »

Cynthia wrote:Tex, is there anything significant about a low white blood cell count when you're not on medication? Mine was a little low when they did my initial bloodwork, but the doctor didn't comment on it.
There are about a zillion possible causes, some of them innocent, some of them serious. As you pointed out, a lot of drugs can cause the condition, including antibiotics, and drugs one would never suspect, such as Wellbutrin. Even things such as parasites, or rheumatoid arthritis an cause it. Vitamin deficiencies, (especially a folate deficiency), and mineral deficiencies, such as copper and zinc, can cause the problem.

A common cause is pseudoleukopenia, in which even though the body is producing an increased supply of white cells to fight an infection, most of the leukocytes rush to the site of the infection, so a blood sample taken from core blood will show a low count. Even common viruses such a cold or flu, can have that effect. And if RA and other autoimmune conditions can cause it, I'm pretty sure that an IBD could have a similar effect, until the body has had time to stabilize. Anyway, that's probably why your doctor wasn't concerned.

Tex
:cowboy:

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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