New diagnosis but no treatment offered. :(

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Kam
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New diagnosis but no treatment offered. :(

Post by Kam »

Hi there, so glad to have found this site. I am 30 and have suffered since my teens with "IBS". Things have really deteriorated over the last 18months, with many GI symptoms and gradual weight loss, so in desperation (as my GP had no suggestions) I consulted a naturopath/herbalist who recommended a wheat free and dairy free diet and felt I had chronic malabsorption issues. I felt some relief initially, and continued on my GF diet and reduced dairy diet(didn't eliminate it entirely). However this did not last long as after 3 months or so GF, I suddenly started experiencing watery diarrhea, anywhere from 4-10 times daily, with associated cramping pain, decreased appetite and occasional nausea and increased weight loss. (I'm very slim already and can't afford to lose anymore - I'm 5 foot 10 and now weigh only 110lbs)

Last week I went for a colonoscopy and gastroscopy, my sister has Ulcerative colitis, so they were checking for that and crohns. I began eating gluten again a week prior as per nurses suggestion so they could do a celiac test. GI said at the time that macroscopically everything was perfect, but he took a lot of biopsies. When the biopsies came back, all were normal except for those taken from the colon and ileum. This is what the report says:

TI and Colon Bx: Sections showed fragments of large bowel mucosa with increased numbers of mixed chronic inflammatory cells and eosinophils in the lamina propria together with occasional neutrophils. This is associated with increased lymphocyte transmigration across surface epithelium and crypt epithelium. The subepithelial collagen table is of normal thickness. No epithelial dysplasia or neoplasia. The ileal mucosa shows similar features with some mild villus blunting, increased lymphocyte transmigration across surface epithelium and increased mixed inflammatory cells in the lamina propria. No ulcers, granulomas, viral inclusions or parasites seen.

Comment: Differential diagnosis includes lymphocytic colitis, resolving infective disorder, early stage collagenous collitis and a drug reaction. Occasionally, idiopathic inflammatory bowel disease may show lymphocytosis. While similar features may be seen with coeliac disease it is noted the duodenal biopsy is within normal limits.


I was unable to discuss this report with the GI who performed the procedure, as he does not have an appointment available for me until October. The one thing he did say at the time of the procedure was I was wasting my time going GF and that I did not have any food intolerances and should not be excluding any food groups from my diet - indicating that this was the reason for my weight loss :( So I went back to my GP. He brushed off the microscopic colitis idea, saying it was of no importance, and said there was nothing specific to explain my symptoms. As things had temporarily settled down at this point after the colonoscopy, he sent me on my way with absolutely no treatment/management suggestions. However my symptoms are back in full force, including yellow foamy diarrheah amongst the watery movements, and the general feeling of unwellness and queasiness. My other concern is that 3 weeks prior to the sudden appearance of these symptoms, I started taking Zoloft for anxiety/depression. Since developing the chronic diarrhea I have read that Sertraline is linked to microscopic colitis (noone told me at the time) however my GP refuses to consider that the sertraline is responsible for or at least triggering my symptoms. He doesn't seem to feel my chronic diarrhea is of any importance, but I feel like I shouldn't be expected to just "live with it"!

So what do I do now? :sad: Would appreciate your input. Sorry for the long post.
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carolm
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Post by carolm »

Hi Kam,
I am not a veteran expert on this site but I can think of a few basic things to recommend. For one, I strongly urge you to get back to the gluten free and dairy free diet. As you can see by reading this site a very high percentage of us have gluten sensitivities (90%+) with dairy/casein being the next highest food sensitivity. The first step to getting better is to get rid of these irritants. I'm sorry that you've gotten such terrible advice from your doctors and nothing to help you reduce the inflammation. Certain meds are also known to be associated with the onset of microscopic colitis, such as SSRI antidepressants, NSAIDs like ibuprofen, and statin meds used to lower cholesterol levels. As you look at other posts from newbies and responses from our members you'll probably find more in depth advice. Many people (but not all) have had to take Entocort to reduce inflammation in order to allow them to at least start to function again, myself included. I know some members have been able to order Entocort from Canada and India, so that may be an option for you. I know there are posts that address how to do that. Lastly Imodium has helped many to get the diarrhea under control.

We have other members from Australia that I hope will chime in and may be able to steer you toward medical professionals in your area who can be of some help. It's a terrible feeling to feel like you are wasting away and no one will help you. I can assure you that you'll receive truly valuable help here from people who are very knowledgable. Keep reading and digging through this information. And trust your own instincts about what is good for you and what isnt'.

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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tex
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Post by tex »

Hi Kam,

Welcome to the board. I completely agree with what Carol has said.

Wow, you have some ignorant doctors! There is little question that any doctor who disputes a pathology report that clearly defines the histological markers of microscopic colitis is not only ignorant, but flirting with malpractice. How on earth did he ever get through medical school? He probably thinks that you are too young to have MC, but our youngest member was 2 and a half years old when she was diagnosed. After reading about how most of us here on the board control our own symptoms, her mother changed her baby's diet, and she has been doing fine, ever since.

In addition, the villus blunting in your terminal ileum is clear evidence of serious gluten sensitivity. That nurse also has no working knowledge of celiac disease, because eating gluten for only a week prior a medical test is not going to make any difference in the lab results -- it takes several months of eating gluten to cause any significant changes to the villi of the small intestine, or to make any difference in the outcome of a celiac blood test. The villus damage noted in the terminal ileum is almost surely residual damage left over from before you started the GF diet (it takes several years for all the damage from gluten to heal).

The eosinophils are almost certainly an indication of an adverse reaction to a drug, (IOW, drug-induced microscopic colitis), especially if they are most prominent in biopsy samples from your left-side colon. The drug in question is probably the zoloft, as you suspect.

Doctors almost always automatically deny that the drugs that they prescribe can cause patients to become sicker than they already are. We have quite a few members whose MC was triggered by sertraline. Unintentional disease or illness that results from improper treatment by a doctor is known as an "iatrogenic" illness.

Almost everyone who has MC is sensitive to gluten and all dairy products, and about half of us are sensitive to soy and all legumes. The reason why you began to have symptoms several months after you started the GF diet is probably because you were still eating traces of gluten, or dairy products, or because you are sensitive to soy, or some other protein, (some of us are sensitive to eggs, and various other foods). In order to control your MC symptoms, you have to avoid all of your food sensitivities, 100%, and that includes avoiding any drugs that can trigger MC.

I realize that you are stuck with a government controlled health system, but if you want to get your life back, you're going to have to avoid those doctors' advice, and take control of your own health (the way that most of us here are doing). Claiming that diet has nothing to do with MC is like trying to argue that breathing polluted air has nothing to do with asthma, black lung disease, or lung cancer.

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.
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For your docs

Post by JLH »

:BSFlag:


:welcome: to the family.

Did you see Tex's tag line?
"A little known "fact": The hardest material known to modern science can be found in the skulls of gastroenterologists who believe that diet has nothing to do with digestive system diseases, such as microscopic colitis."
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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Gabes-Apg
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Post by Gabes-Apg »

Hi there Kam
:gday:
where in Aus are you based??


on this forum we have a theory, if GP's/gastro specialists spent a week with MC type Diarrhea, they would definately take it more seriously.

I was diagnosed (Dx) 2.5 years ago (age 40) had IBS my whole life, and had definately MC symptoms for 2+ years prior to Dx

long story short based on majority findings of this site....
- Zoloft can be a major trigger for MC - I have managed to find a MC friendly AD med that works quite well
(some of the ones that others on this site take that work well for MC are not available in Aus)

- there are about 70% - 85% of us that are highly reactive to gluten, but come up negative on the celiac blood test. (even when we are made to eat gluten before hand)

- MC is slightly different to the other IBD's. some treatment regimes (meds/natural therapy) that work for other IBD's may give some short term results but for some reason (and we dont know why) it doesnt provide symptom management for the long term.

- there is no one guaranteed solution or quick solution, no magic pill, what works for one may not work for another. this applies to meds, diet, natural therapy, everything. my tag line for mc is, there is no right way or wrong way, there is your way.

-Diet Management is a very very good option. It optimises the reduction/elimination of symptoms whether you take meds or not (for about 95% of people here)


when Dx my symptoms were not too bad, and I confirmed that Soy, Gluten, Yeast and Lactose were major triggers. based on what has been learnt by the majority of people here, since diganosis I have not had salad, tomatos, green vegestables (beans broccoli), raw fruit.

A colonscopy less than a year ago confirmed the MC was in remission, but i still have inflammation of the gut and immune system issues.

This forum is quite unique, there is a group of wonderful people willing to answer your questions(no matter what the topic, talk about poop and gas is normal....) and help you through the MC maze. there are many that have done the 'hard yards' and willing to share their learnings.
we are very proactive about research results and articles relating to IBD's, inflammation etc

Self management becomes part of the success of living with MC. Listening to your body, figuring out what works for you, not relying on GP or GI specialists.

Hope this answers some of your questions.... it can be ALOT to digest at first (pun intended!)

:emptytoiletpaperroll:

we are pretty lucky here in Aus, the availability of fresh affordable ingredients, and the wide range of Gluten free products that are readily available make the diet management quite easy.....

take care
talk soon

Gabes
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Post by Zizzle »

Wow! Grrrr! Your doctors are nutzo!! I am no doctor, but your pathology report read to me like a clear-cut case of Lymphocytic Colitis AND celiac disease!! You can help yourself, with 100% gluten avoidance of primary importance, and figuring out your other sensitivities. I'm glad you found us!
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Post by Beth »

Welcome, Kam. You've finally found a place of sanity here. I'm so sorry that things have been so difficult for you and that your doctors are so incompetent. Many of us make our way here after very similar experiences. I'm still struggling myself to find answers, after 10 years of off and on colitis flares. But I can promise you that if I hadn't found this site 10 years ago, I would be deathly ill by now. At least I can function, though I still have to keep hunting for answers. Read as much as you can here, ask as many questions as you want, and rest assured that you are going to get better sooner rather than later now that you're about to be armed with knowledge.

And take everyone's advice - get off the gluten, dairy, soy, corn, legumes and the drugs for awhile and see how you feel. You can slowly add back in one thing at a time once you're certain you know what's causing such gastric distress.

Good luck - and we're here to support you!
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Post by Leah »

Welcome Kam. I'm so sorry you have the doctors that you do but my doctor didn'y have much to say baout food either. This forum has saved me. Tex is an absolute expert, so listen to everything he has to say. The rest of us are all going through the trials along with you.

You MUST be diligent about the diet. All gluten and dairy must go. You may want to eliminate soy also for now. After my doctor gave me a drug that didn't work, I asked for the drug that most people on this forum had the best luck with :Entocort (budesonide). After three days, the WD got much more solid and after a week, I was only going once a day. The drugs help get the inflammation under control, but the diet is what heals. It takes months to heal, but after about four months, I was able to step down the dose of the drug and start "testing" small doses of food I have given up ( salad, fruit). Instead of focusing on what you CAN'T eat, it's a good idea to find things you CAN and build a diet around those foods. Chicken,most meats, rice, very cooked veggies,apple sauce, avocados,rice cereals (Chex) with almond or coconut milk...etc. READ ALL LABLES CAREFULLY. It takes some work at the beginning, but once you have a known group of foods you can tolerate, it gets easier. Don't eat in restaurants for now either. Remember: butter is dairy and soy sauce is made from wheat. If you do all of this, YOU WILL START TO FEEL BETTER. It takes time and patience.

Good luck and please ask anything and let us know how you are doing

PS Tomato products bother me, but some people are okay with them.

Leah
Kam
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Post by Kam »

Thank you so much for all the replies! I have been doing a lot of reading and think I'm gradually getting a few things clear in my mind.

I am going back to the doc again this week with printed articles from the Mayo Institute and others on the link between microscopic colitis and Zoloft, and will insist on weaning off of Zoloft for starters to see if the symptoms resolve. If my LC is drug-induced, perhaps I will be one of the lucky ones whose symptoms disappear once off the drug and don't bother me again!

He will probably offer me steroids when I tell him it has flared up again, I'm not sure whether to take these at the same time as coming off Zoloft or wait and see whether my symptoms improve first? Also, I'm thinking I will remain on my eating everything regime until a little time has passed after stopping zoloft - I don't want to stop everything at once and then not be sure which course of action was responsible for the improvement, and seeing as getting off Zoloft is going to be a big deal,:shock: I don't want anything else to interfere with it. One change at a time.

Regarding food intolerances, here in Australia we don't have Enterolab, so I was thinking about gettting an IgG screening panel done(blood test). However it seems the medical community views IgG testing as "alternative" and tantamount to reading tea leaves, so I was wondering what you all think. In particular, fellow MC sufferers in Australia - did you get any food allergy/intolerance testing done and if so was it helpful? I want to be balanced - I don't want to go needlessly restricting my diet to the extreme, but at the same time I DO believe there is good reason to believe that food intolerances play a big role, regardless of what the medical community at large thinks. I'm struggling to know where to start, and would love to avoid the whole elimination diet thing :roll: - if I can cheat and just be told what I can and can't eat I'll take that route! But I am sceptical by nature and always like to know the exact science and proof behind a diagnosis and it's treatment etc. I'm not one to believe everything the local quack or naturopath tells me.

Once again, your input is greatly appreciated.

Kind Regards,
Kam
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Beth
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Post by Beth »

Hi Kam,

I know it's tough to hear that you need to take out food, but your labs indicate that you have significant damage to your gut right now, which means it's going to take remaining on a gf, df diet — at the minimum. Trust me, if you don't do this, you're going to continue to have problems, even if you get off the medication. It takes a LONG time for the gut to heal from this kind of damage - i.e. 18 months to 2 years. I'm so sorry to have to tell you that, but it's so important to know this; otherwise you'll be in for a much longer haul.

Tex can weigh in here, but my recommendation would be to wean off the zoloft, stay on a gf, df diet (plus eliminate anything else that appears to be problematic, especially raw foods; salads can be a nightmare for some of us because it's too much roughage), and then after a year or so, test one food at a time. And you may want to find yourself a different doctor. Your GP sounds like he's not much on your team.

Best of luck to you . . . I wish you speedy healing and much patience as you figure this out.
Elizabeth
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tex
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Post by tex »

Hi Kam,

Unfortunately, we have found that the blood tests are pretty much worthless for detecting IgA, IgG, and IgE antibodies that are generated in the intestines. The only tests that seem to be reliable, accurate and repeatable are the EnteroLab tests. The antibodies simply are not picked up by the blood in sufficient numbers to provide any reliable results. One of our members (Ant) in Hong Kong sent a sample to EnteroLab (in Dallas, TX) and other than a slight delay in Customs in Alaska, it worked fine, so I would think that you could probably send a sample from Australia. You might e-mail or phone the lab, to get their opinion on it.

We have found that any other test that you might use will not provide reliable results, unfortunately. No test is 100% reliable, 100% of the time, for every person, but the Enterolab tests are the best available, by far. They have a proven track record among many, many thousands of satisfied clients. Of course, almost all the doctors have a lot of irrational faith in those worthless blood tests, and they have no confidence at all in EnteroLab's stool tests, simply because that is the way that they have been trained. Their training is out of step with reality. The wheels of progress seem to turn slowly in the medical industry.

If the Zoloft is your sole problem, you should see improvement almost immediately after discontinuing it's use -- certainly within a few days after it clears your body. If the symptoms continue, however, that's pretty strong evidence that food sensitivities have been triggered when your genes that predispose to MC were triggered.

The main thing about the diet as a treatment is that it is 100% safe, with no side effects, except maybe a craving for food ingredients that you have become addicted to, such as the gliadorphin (or gluteomorphin) in gluten, and the caseomorphin in dairy products, which have opiate-like effects. Once you have reached remission, then you can try to reintroduce any foods that you feel that you might not actually be sensitive to. Once you have avoided those foods 100% for a few months, if you try to reintroduce them, your body will tell you very quickly whether or not you are sensitive to them. It's the surest test of all.

Please be aware that most doctors resent patients who seem to know more about their issues than the doctors do, and many of them resent patients who try to educate them -- specialists are especially resentful, since they consider themselves "experts". They feel very insecure when dealing with someone who knows more about treating a disease than they do, especially someone without a medical degree.

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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Post by carolm »

HI Kam,
Leah wrote: You MUST be diligent about the diet. All gluten and dairy must go. The drugs help get the inflammation under control, but the diet is what heals. Leah
Leah sums it all up well. We all know this to be true.

Hang in there.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Leah
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Post by Leah »

Hi Kam. I totally get how your thinking about this. I was in the same place when I first got the dx. I putt off giving things up for about a month before I realized that if i really wanted to heal, I would need to get serious. But I understand how your mind is working. You are "wishing" that the Zoloft is the problem ( And I hope it is) but just be mentally prepared to make some tough choices down the road.

Good luck
Leah
Kam
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Post by Kam »

Well, unfortunately I got the blood test done before reading your replies, lol, but never mind, it will be interesting to see what it says and I will take it with a grain of salt....or a cup if need be :lol:

I went back to the GP today, he didn't look at my printed articles but agreed immediately that I should come off the Zoloft, which is a change from last week! Perhaps he's done a little bit of research since then! So starting tomorrow I drop down to half dose for a week or two, then half every alternate day for another week before cutting it out completely. Hopefully I won't go to pieces :shock: He said give it a couple of weeks on nothing, then go on a different SSRI - he suggested cymbalta or pristique, I don't know anything about them yet. He didn't offer any steroids or other treatments. In fact, he still doesn't say I have a diagnosis of LC, the best he could manage was that I "might have had a little bit of colitis". I suprised he didn't choke as he said that! :smile:

So I guess we'll soon see if it is the drug causing the inflammation. If the symptoms persist I will knuckle down and do the official elimination diet set out by our leading hospital for food intolerances.
Kam
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Post by Kam »

P.S Continued thanks for all the input, suggestions and support. It's much appreciated.
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