introduce myself

[harma]

Hello everybody, my harma, I live in the North of the Netherlands in a city called Groningen, I am 41 years old and only 5 days ago diagnosed with CC and of course I am Dutch. When the GI told my I have collagen colitis my first reaction was collagen what?? I had severe complaints (which by summarized as diarrhea diarrhea and diarrhea) for over 4 months. I have started seeing doctors from the middle of june, first of course the general physician, blood tests, stool tests, again blood tests and other stool tests, result nothing. On my request I was referred to a GI. I had to wait for 5 weeks (!!!!) for my app. thanks to the dutch system of waiting lists. That is my only complaint. My GI is great, he took my complaints serious and after a colonoscopy and got my diagnoses CC.

I have already started with entercort, only my pills have a different brand name. And is it working, almost within 12 hours. But I also experienced some side effect, dizzy nauseous bit of the world feeling. I am one on one pill a day now and that goes quit well. It is not cured 100% yet but I will give it some time. I do not like it at all to take this horrible pills ( that's how I call them my horrible pills in dutch "rot pillen").

But I really hope I can manage this disease with some life style changes and kind of diet. I already don't take lactose. One of the things that keeps bothering me is the gluten (did you all know that is a dutch word gluten). I was convinced before my diagnoses CC it was celiac disease. I have been tested for that, bloodtest (negative) and samples of the small intestine were taken (also negative, looking good).

But whatever I read on CC I keep on bumping into the link with Celiac disease and gluten intolerance. In my search the last months in 'what is wrong with me" I have been of gluten of about 4 days, just see what would happen and my complaints immediately got much better. So I tought gluten is the problem. But if you want to get diagnoses for Celiac disease you have to eat gluten. So I started again. And of course back to the normal diarrhea. After the samples of my small bowel were taken I started again gluten free eating but no results at all. And all the tests blood and samples from the small intestine where negative. So now I don't know it anymore if a gluten free diet will make any difference to my CC or not.

I am very very very happy with this forum really very happy. It was not easy to find, not many people have this disease. But it is so great to find all this information on this website and read about other people's experiences. Really great

[JLH]

Harma. We're very glad you found us. Keep reading on this site and keep gluten free a while longer. Make certain you are not ingesting any hidden gluten in your pills or food. I think if going gluten free helped, it will help again. JMHO.

[Gas Bag]

Welcome Harma, you have come to the right place for good information and people that can relate to your problem. Misery loves company.

Deb

[barbaranoela]

to welcome U ~~~~~your medical system sounds much like what the Canadians go thru---I had a wonderful friend living in Canada and it wasnt very pleasant to HEAR what she went thru to get medical attention--

So, lets hope that much of your questioning ,here, will be of more help for U~~~

We surely have our UNITED NATIONS represented in this room ---and as I always say grab a

--set yourself down and ask away!!!!!

Barbara--

[tex]

Hello Harma,

Welcome to our internet family. It's good that your GI doc was acquainted with the disease, so that he knew he needed to take biopsies, in order to make a diagnosis of CC or LC. Most of us have had the same experience of testing negative to celiac disease, while being very sensitive to gluten, (except for a few members who also have celiac disease). (No, we surely did not know that gluten was a Dutch word - thanks for pointing that out). Most of us are also sensitive to casein, (the primary protein in all dairy products), so we have to avoid all dairy products, also, and about half of us react to soy. Very few of us can attain remission by avoiding gluten, alone - most have to avoid all dairy products as well, (even traces), and many also have to avoid all traces of soy. Some have to avoid other foods, as well. These additional food intolerances are one of the main features that distinguish microscopic colitis from celiac disease. It usually takes a while for diet changes to bring remission with MC, however, so taking a corticosteroid will bring relief from the symptoms much sooner than diet alone, because the gut has to have time to heal from the damage caused by gluten, casein, soy, or any other intolerances that we might have. Everyone is different, but it can take 6 months to a year, for the diet to bring remission, and some cases require even more time.

I'm curious - what is the name of the rot pillen that you are taking? Entocort will not normally bring on remission, at a dosage rate of only one pill, (3 mg), per day. After the intestine has healed, one pill per day is often used to maintain remission, but initial treatment usually requires 3 pills, (9mg), per day.

You're the first member here from the Netherlands, so I'm glad you found us. I only know two words in the Dutch language, (rot pillen), so it's fortunate that you have a good understanding of the English language. Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[Polly]

Hi Harma and

How nice to have a member from the Netherlands! And also interesting to know the origin of "gluten". I visited your country many years ago and loved it! I recall having a lovely "rice table" meal among other fun experiences.

The classic BLOOD test for celiac disease will NOT identify the kind of gluten intolerance that most of us with MC (LC or CC) have. Unfortunately, most physicians do not know this. At the present time, the only tests that can do this are STOOL tests done by Dr. Kenneth Fine's lab (Enterolab) in Texas. Many of us here have sent stool samples to Dr. Fine's lab, even from as far away as Spain and Hong Kong. He can also test for other intolerances that often go along with gluten intolerance - casein (dairy), soy, eggs, yeast, etc. Go to www.finerhealth.com for more information or directly to his lab at www.enterolab.com.

My blood test for celiac disease was negative, but my stool test is positive. In fact, I am highly sensitive to the tiniest bit of gluten, just as a celiac would be. I also have multiple food intolerances, but by eliminating them have been able to keep my MC in remission for 8 or more years now. I use diet alone - no medications...... although I wouldn't hesitate to use Entocort if I suffered a relapse.

Looking forward to further chats.

Love,

Polly

[shekoe]

Welcome Harma,

Sorry to hear you have been tormented by D. Even though you had to wait so long for a GI visit, I think you did better then most of us Americans. Because of your age (41), I doubt that many American GI specialists would have done biopsies on you. You would not have gotten an accurate diagnosis nor would you have been prescribed Entocort. I, too, have CC and responded very quickly to Entocort. Unfortunately, I had an allergic reaction and had to stop the drug. Currently, I am in remission by going gluten free. Recently I found a web site called Celiac chicks.com. One of its members visited Amsterdam last April and wrote a two part article on being gluten free in Amsterdam. You might want to visit the site in case you travel to Amsterdam. It's so exciting to see our internet family becoming international. Best of luck achieving and maintaining remission. Feel free to vent here, you are among friends. Sheila

[ant]

Dear Harma

Welcome from Hong Kong. You have found a wonderful international family !

Thank you for sharing your experiences. I am also curious to know the name of your "rot pillen". Is it perhaps called "Budenofalk Capsules"? (I read somewhere that it is similar to Entocort).

Since June this year I have been on Entocort 9gm per day, and while not a cure it has helped me lead a more normal life (except for the restricted diet). Finding out which foods you are intolerant or sensitive to is difficult. If you have not already started, it is useful to keep a diary of what you eat and how you react.

All best and good luck on your journey to remission, Ant

[MaggieRedwings]

Welcome to the Family Harma,

There is a wealth of knowledge here and take time to visit the different rooms and you will find answers to just about anything you can think of.

Maggie

[mbeezie]

Welcome Harma,

Welcome! So glad you found us - getting support is so important. Sorry to hear you have been ill but glad your doctor figured it out quickly.

Fine tuning the diet takes a bit of time and patience. Most of us react to gluten, dairy and soy, so if you are still symptomatic you may want to try eliminating some additional foods. As Polly mentioned, you could speed up the process by doing the stool test from Enterolab.

Looking forward to another Dutch lesson!

Take care,

Mary Beth

[harma]

thanks you all so much for your quick and so nice responses!! Everything I have heard and found here is of great help. I like the idea that there are actually things that I can do myself to cure of better said control this disease than just taking pills. For sure I will do the gluten sensitivity test and food allergy test at Enterolab. Writing this I just realized, asking my insurance company to pay for this cost will be a "mission impossible". In the end they may be willing to do it, but it will cost me so much energy to convince them of the use and the need. The funny part is, my pills (covered 100% no problem at all) are also not cheap. Those test probably will help me get of the medication. Getting the medication paid for even the rest of my life will no problem at all here in the system. But doing some tests, other than the routine standards one, will be a problem. Putting some money myself in my health is fine with me. Its just how strange systems sometimes can work.

My pill, the rotpillen (rot means horrible, bad) are budenofalk budesonide 3 mg. I started with two a day, but because of the side effect I lowered it to one (after consulting the GI doc of course). And the one pill seams to be working for me. I am quit happy with the result till now. I am only using for 6 days now and no more diarrhea, it is not back to totally normal. But it is much much better. I am still a bit afraid of the side effect, I am a very sensitive person, any misbalance in my body gives problems and these pills mess around with your hormone system. But till now it goes quit well.

About the gluten, well I think it is a Dutch word, because of the way it is written. Of course many doctors and researchers played an important role in discovering celiac disease and what causes it. One of these doctors was a Dutch one and it quit a strange story how he discovered a relation between between wheat or grain and celiac disease. In the winter of 1944/45 the last year of the second world war here, in the west part of Holland a famine was going on. For sure people were eating very little or no bread or other wheat products. This doctor saw complete changes in the complaints of some of his patients (like diarrhea), mostly children. He maid the link than between the diarrhea (and maybe other symptoms) and the wheat products. That is was gluten, that is discovered later in the 50's I think (not sure). But who would have thought that the war and famine were useful for this discovering gluten and celiac disease.

Since you all know so much about this disease I have some questions, my complaints the diarrhea started just overnight. One moment I was okay, the other moment diarrhea until now after taking the medication. But before that I have had (mild) bowel problems for over 9 years, like IBS. Is that the first stage of CC? does anybody now. Or is CC something that is out of the blue just there?? Do you develop it in a couple of weeks or months or years? Or doctors just don't know? Another burning question what is a good replacement for the NAISD pain killers (like ibuprofen). I only use them during my period , but I really need them than. I tried paracetamol, but doesn't work at all. Any suggestions?

[tex]

Harma,

Here in the U.S., many insurance companies do not pay for tests at Enterolab, especially if the tests are not ordered by a doctor, so most of us end up paying for the tests out of our pockets. The lab can supply you with the proper numbers for insurance claims, though, it you wish to see if your insurance will cover it.

Its just how strange systems sometimes can work.

You're right! Insurance companies would rather pay a fortune to diagnose and treat a disease, than to pay a little to prevent it.

You're fortunate that the budesonide is effective at such a low dose. Quite a few members here have had to stop using Entocort, because of neurological side effects, (dizziness, blurred vision, etc.).

But who would have thought that the war and famine were useful for this discovering gluten and celiac disease.

I wasn't aware of the details of how the connection was made. Thanks for sharing that information. I guess it just goes to prove once again, that there's a silver lining to every cloud.

We are all different. Some begin having symptoms that slowly get worse, while others seem to get sick virtually overnight. Many things can cause CC. It can be caused by using certain medications, (such as NSAIDs, SSRIs, PPIs, etc.), it can be caused by various forms of enteritis, (such as influenza, parasites, bacterial infections, etc.), it can be caused by certain other diseases, (such as celiac disease), and it can be caused by seemingly unrelated events, such as stopping a long-term smoking habit. Gluten sensitivity, for example, is not known to cause CC, but typically, when a gene that causes CC is triggered, then a gene that causes gluten sensitivity, (and possibly other food sensitivities), is also triggered, at the same time.

Regarding your question of finding an effective painkiller, especially for dysmenorrhea, (menstrual pain), there aren't many effective alternatives, for people with MC. One thing to rule out, (assuming that you're already ruled out endometriosis, cysts, etc.), is a B vitamin deficiency. Vitamins B-12 and B-6 are commonly deficient, especially during a woman's menstrual cycles. The problem becomes worse, once CC is diagnosed, because when someone has CC, they also usually have a malabsorption problem, (because of inflammation in the small intestine), so they are unable to properly absorb nutrieints, vitamins, and minerals from their food. The B vitamins are especially vulnerable, because they are all fat-soluble, and we are unable to absorb fat, if we are malabsorbing. Therefore, most of us find that we can avoid, (or at least minimize), peripheral neuropathy problems, and various other issues, if we take at least B vitamin supplements. Since the cause of the deficiency is malabsorption, just taking oral vitamin supplements may not help much. The best source of B-12 is a sublingual lozenge, that also includes folic acid, (since folic acid is necessary for the utilization of B-12). Sublingual lozenges are designed to dissolve under the tongue, where they are absorbed directly into the bloodstream, without having to go through the GI tract. In many parts of the world, you can buy sublingual tablets that contain all three of these B vitamins, B-12, B-9, and B6. I'm not saying that a B vitamin deficiency is your problem, but it could be part of it.

http://www.associatedcontent.com/articl ... tml?cat=50

When you tried parametacol, did you try Pamprin Maximum Pain? It contains other ingredients, that can help with dysmenorrhea, (pamabrom, which is a diuretic, pyrilamine, which is an antihistamine - in addition to the acetaminophen, which, of course, is a pain reliever and fever reducer). Together, the combination is claimed to treat symptoms such as tension, bloating, water weight gain, headache, back pain, cramps, aches, and irritability.

http://www.drugs.com/mtm/pamprin-maximum-pain.html

Several nutritional supplements have been indicated as effective in treating dysmenorrhea, including omega-3 fatty acids, magnesium, vitamin E, zinc, and thiamine (vitamin B1).

Research indicates that one mechanism underlying dysmenorrhea is a disturbed balance between anti-inflammatory, vasodilator eicosanoids derived from omega-3 fatty acids, and proinflammatory, vasoconstrictor eicosanoids derived from omega-6 fatty acids.[6] Several studies have indicated that intake of omega-3 fatty acids can reverse the symptoms of dysmenorrhea, by decreasing the amount of omega-6 FA in cell membranes.[7] [8][9] The richest dietary source of omega-3 fatty acids is found in flax oil.[10]

Oral intake of magnesium has also been indicated in providing relief: two double-blind, placebo-controlled studies demonstrated a positive therapeutic effect of magnesium on dysmenorrhea.[11] [12] A randomized, double-blind, controlled trial demonstrated that oral intake of vitamin E relieves the pain of primary dysmenorrhea and reduces blood loss.[13] A review of case histories indicated that zinc, in 1 to 3 30-milligram doses given daily for one to four days prior to onset of menses, prevents essentially all to all warning of menses and all menstrual cramping.[14] Intake of thiamine (vitamin B1) was demonstrated to provide "curative" relief in 87% of females experiencing dysmenorrhea, in a controlled study.[15]

http://en.wikipedia.org/wiki/Dysmenorrhea

There are also a few natural painkillers that might help, such as Boswellia serrata extract, (commonly available as a concentrated product known as 5-Loxin), for example. I've tried this for backaches, headaches, etc., and while it seems to help, it takes quite a bit of it to be effective, which makes it kind of expensive.

Some of the narcotic-based combinations with acetaminophen, which are available in various parts of the world, can also be used, if you don't mind using a narcotic-based product, but these would have to be used with caution, of course, because of the possibility of dependence/addiction.

Maybe someone else will have some good suggestions, but there aren't many alternatives, in the form of conventional painkillers.

Tex

[adelie]

For dysmenorrhea, two items come to mind. One is hyoscyamine (aka levsin, hyomax, levbid, nulev ...). It relaxes smooth muscles. In the GI world, it's used for intestinal cramping. The uterus is also a smooth muscle, so it's also been used for dysmenorrhea. Hyoscyamine is an extract from the belladonna plant, so if you google it, you'll probably find some belladonna-based herbal products. If you want to try hyoscyamine, I'd recommend getting the prescription and not the herbal supplements. The heart is a smooth muscle too and with the prescription, you know the concentration of hyoscyamine you're getting. I try to use herbs when I can (especially tea forms - I often have trouble with pills), but this is one that I won't mess with. It's known as deadly nightshade for a reason:
http://en.wikipedia.org/wiki/Atropa_belladonna

If you do want to try an herb, crampbark can also help with dysmenorrhea. It's another one that helps with the pain by reducing cramping. It's not the tastiest if you make a tea of it (not as bad as some though), but I know several people who have had good results with it. I used to use it from time to time and it helped some. I take hyoscyamine partly to get my heart rate up and I don't remember increased heart rate as being as much of a concern with crampbark. I've been pretty happy with herbs I've purchased from Mountain Rose Herbs (http://www.mountainroseherbs.com/bulkherb/bulkherb.html). On their product listing pages, there are links to "contemporary info" and "folklore info" which give a brief summary of new and old uses. It's not the most comprehensive, but a good start.

Karen

Karen

[harma]

About three weeks ago when I just was diagnosed with CC and also just started with my "rotpillen" budenofalk, today life already looks totally different and much better. I am still on one pill a day, it may sound like a low doses but it works very well for me. I just see and feel the recovery of my gut. From day one no D anymore. I almost call them my miracle pills, because they work so well and I have (thank god) no side effects of the med.

And in my first introduction message, I was a bit grumble about everything, about the doctors here and the whole health care system in NL. But reading some messages on this board, it put my feet back on the ground,counting my blessings. I have a very good GI doc, if I have any problem what so ever, if I call, he always calls back the same day. I don't have to pay a penny for my meds. Thinking all this over I thought I could be a bit more grateful for all that.

Of course finding this support group is also great. It have helped me to get to know more about CC and besides taking my pills what more I can do to control it.

I am also going out more. It was not the D that kept me inside for months, more a mental fatigue. Slightly I am getting more energy, meeting friends again, see a movie, have a drink.

I just hope this whole positive line will keep on going up and again thank you all for your support I really appreciate it. It is just great this on line support group.

[Gloria]

Harma,

I'm so glad to read that you're much better. I hope you continue to do well.

Gloria