Hi Everyone I am New Here

brookevale · Post by **brookevale** » Mon Mar 03, 2014 12:41 pm

Hi,

I have not been diagnosed with MC, but am having a colonscopy on March 13 which will hopefully determine that once and for all. Thank you for allowing me to join this group. I have done a lot of reading on MC and have all the symptoms plus some weird ones. Here's how it started. In November 2013 I had strep twice which morphed into "mild" meningitis. I was on amoxicillin and omnicef--several rounds. On December 27, 2013 (I will never forget this day) I started having loose stools. Now I have had many digestion issues, including sphincter of oddi dysfunction, but have never been a diarrhea person. I ended up in the ER four days later with lower right side pain (worried it was appendix). Nothing came out of that other than a CT scan showed some thickening of my sigmoid colon. For the last two months I lost 20 lbs (went from 136 lbs down to 116 lbs), have had diarrhea so severe I should have been hospitalized for dehydration and abdominal pain has been awful. Worse, is that about 15-20 minutes after eating or drinking I feel a weird sensation in my gut which then triggers an all over panic attack. I also itch everywhere--but not on my skin--under my skin--as if I'm wearing a wool sweater under my skin. I've been put on antidepressants, anti-anxiety meds, and am taking pepto and imodium. Doctors thought I had SIBO so I did a long round of xifaxan which didn't help. I started doing the Specific Carbohydrate Diet which I think helped for a few days, but then I got brave and ate some sugary peanut butter and honey. Since then I am back to the elimination phase and feeling awful. I have already been gluten free, dairy free, and recently soy free. Basically, I am doing paleo I think. I keep trying to eat nuts and think they are making things worse.

I read the MC book by Wayne and it fits me to a tee. There is so much information to take in I don't know where to start. I am worried this colonoscopy won't pick up on MC if that is what I have. How can I be sure it does? My GI doc doesn't like being told what to do so I am afraid to tell him to do multiple biopsies. I want to be tested for both MC and the mast cell enteritis.

Sick of feeling sick,
Brooke

fatbuster205 · Post by **fatbuster205** » Mon Mar 03, 2014 1:16 pm

Hi Brooke! Welcome to this site which will change your life! I suggest you dig deep, find some courage and insist on multiple biopsies! After all it is your body and you have a right to know what is wrong! If you are insistent and they don't do it they would need to be providing a very good reason as to why they did not do what you are very legitimately allowed to request.
That RHS pain is a symptom I get when in flare - in fact it is my early warning indicator! I also itch when in flare so your symptoms are not so odd! I can't help re the anxiety but feeling as ill as you do, it is hardly a surprise that you are so anxious!
Take heart - you will get some brilliant advice and support here!
Anne

Post by **tex** » Mon Mar 03, 2014 2:17 pm

Hi Brooke,

Welcome to our internet family. Your symptoms certainly do seem to be a match for MC (probably collagenous colitis).

The pattern of itching that you are experiencing is probably due to mast cell activation disorder. I agree with you, you definitely want the pathologist to use a tryptase-based stain so that he can check the mast cell count of your biopsy samples, to rule out mastocytic enterocolitis. But even if your mast cell count is within the normal range, your symptoms clearly indicate that you have a mast cell disorder, so histamine control will surely need to be a part of your treatment program if you are to successfully achieve remission from all your symptoms.

If I were in your situation (in addition to avoiding gluten, dairy, soy, high-fiber foods, and artificial sweeteners), I would try to minimize sugar and high-histamine foods in my diet, and I would take an antihistamine. The internal itching indicates a fairly significant sensitivity, so you may need to take an antihistamine in the morning, and another at bedtime, in order to gain control. Some members take a non-drowsy antihistamine in the morning, and benedryl at bedtime, for example. Sometimes an above-label dose is necessary in order to control the symptoms, especially when itching is a symptom. Most people can tolerate up to 4 times the labeled antihistamine dosage, without any significant risk of adverse effects, but it may not be safe to take more than that on a daily basis.

There's a slim possibility that the internal itching could be associated with a liver disorder, but that's not very likely. If your liver enzymes are normal, then that's probably not the cause. The most likely explanation is a mast cell reaction to foods in your diet, and a buildup of histamines in your system due to the depletion of diamine oxidase enzyme, a condition that's commonly associated with all IBDs, including MC).

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

Tex (Wayne)

brookevale · Post by **brookevale** » Mon Mar 03, 2014 4:18 pm

Thank you for the warm welcomes. I keep trying to upload a picture of me but can't find one as small as 6kb. Then I tried to link to a public Facebook photo and that didn't seem to take either. I will insist on the multiple biopsies and ask about the tryptase stain. The other symptoms I forget to mention that are bad are stomach gurgling, a feeling as though my intestines are flipping around, a thirst I cannot quench, and nausea. I get scared over the weight loss. It has been so dramatic. I am also anemic--have to get an iron infusion in two days. I really need more than one but doctor only ordered one. I can't stomach the iron. There are few foods I can tolerate. I have realized that my decaf coffee makes me flare. I thought it was the almond milk, but tried coconut milk and it did the same. It feels like it's burning apart my insides.

Grateful I found this forum.

Leah · Post by **Leah** » Mon Mar 03, 2014 5:51 pm

Welcome Brooke. Good for you for already having read Tex's book. Way to take action !
It does sound like MC to me, but whether you have an actual diagnosis is beside the point in the way that you will have to treat your symptoms either way with diet. The Dx will however get you a prescription for Budesonide if you want it. Since your symptoms are so severe and you have lost so much weight already, you might think about taking the drug for a while to help control the symptoms while you change your diet.

I got slammed with the D two years ago and was dx 2 months later. I went on Budesonide ( Entocort) for six months. During that time I completely over hauled my diet and titrated the dose down each month until I was off of it. Some go completely grain free, but I found that I could keep white rice and it's products and some corn products also in and still heal. I mostly ate meats, eggs, white rice, and rice cakes with almond butter ( peanut butter is a legume and a cousin of soy), broth soups with cooked carrots, cooked simple veggies, a little apple sauce, and Chex cereals with almond milk. We all a bit different in what we can and can not eat, but the good news is as I have healed my gut, I have been able to test and add back in many foods.

I also had to give up all coffee ( including decaf) and my morning tea. I was down to herbal tea with honey :( After two years, I am now able to drink decaf coffee with coconut milk and decaf black tea again! Things do get better, so keep that in mind on your journey.

I hate to tell you this, but many antidepressants make things worse and so do many supplements at first. Keep it simple.

I am one of those who take an OTC non-drowsy antihistamine in the am and a Benadryl at night. I didn't discover the histamine thing until about 6 months ago when I was pretty good at only having one BM a day, but it was soft or liquify and didn't understand why. I tried the antihistamine, and the next day… normal! Same with the following and so on. Last piece to the puzzle :)

Now, I am mostly symptom free, but I still am gluten, dairy, soy free and still have problems with raw fruits. It was a journey of ups and downs, but just know that you can get better and you do get use to cooking and eating like this. Feeling good is worth the work.

Remember we are all here to listen and help. Keep us posted
Leah

Post by **tex** » Mon Mar 03, 2014 8:02 pm

Brooke,

The loud digestive system noises are a common sympotom of MC that almost all of us are very familiar with. I also had many occasions when my intestines seemed to be writhing like a snake in my belly, during serious reactions.

If you would like to post a photo, feel free to email any image to me (larger is better, so that I can resize it without losing too much quality). I can easily crop it, resize it, or whatever is necessary in order to get the system to accept it, and I'll be happy to upload it for you.

Tex

ldubois7 · Post by **ldubois7** » Mon Mar 03, 2014 8:54 pm

Hello!
Keeping a journal is a big help, too. Write what you eat (including meds/ supplements) & any reactions & what your stools are like & frequency. It's very helpful as you figure it all out!
Best of luck....we've all been there & are always here to help!

CathyMe. · Post by **CathyMe.** » Tue Mar 04, 2014 6:21 am

brookevale wrote:Thank you for the warm welcomes. I keep trying to upload a picture of me but can't find one as small as 6kb. Then I tried to link to a public Facebook photo and that didn't seem to take either. I will insist on the multiple biopsies and ask about the tryptase stain. The other symptoms I forget to mention that are bad are stomach gurgling, a feeling as though my intestines are flipping around, a thirst I cannot quench, and nausea. I get scared over the weight loss. It has been so dramatic. I am also anemic--have to get an iron infusion in two days. I really need more than one but doctor only ordered one. I can't stomach the iron. There are few foods I can tolerate. I have realized that my decaf coffee makes me flare. I thought it was the almond milk, but tried coconut milk and it did the same. It feels like it's burning apart my insides.

Grateful I found this forum.

Welcome Brooke! When I was at my worst it felt like there was an alien in my belly.

brookevale · Post by **brookevale** » Tue Mar 04, 2014 7:34 am

Thank you again everyone. I am losing my mind over this. Fortunately I am on disability (for sphincter of oddi dysfunction, pancreas issues, neuropathy--yeah I'm a mess). I can barely care for myself let alone the kids and household. I have a detailed diary of symptoms, foods, drinks, meds, supplements, other notes since January 1. It is hard to pinpoint why I started feeling better for four straight days last week, then yesterday and today feel like I'm on my deathbed with nausea, stomach pains/gurgling, headache, the itchy all over feeling, and the anxiety is by far the worst symptom. I do not have anxiety until food hits my small intestine. I know the enteric nerves are in the crypts and villi and something is wrong there. I am so good with my diet. My greatest fear is that I have MC but the biopsy misses it. Like I said, after reading Wayne's book, I know this is MC of some sort.

I am reading some of the success stories to give me hope. I feel like I'll never be well again.

Jeanemcl · Post by **Jeanemcl** » Tue Mar 04, 2014 1:55 pm

Hi Brooke,
I can so relate to your feelings. Just recently I said if I didn't have to eat or poop I would have a great life! Ha! I just came off of 3 bad evenings after a couple of weeks of near normal days/nights. Annoying, but I am beginning to think I need to monitor my quantity of food as when I feel good I start eating more and not paying attention to how much. I have lost 20 lbs so it's not a weight issue...I think I put my gut on overload and it rebels...Maybe... who knows...I keep trying to figure it out and somedays I am just at a loss. People on this site tell me to just keep plodding along with the diet - I am SF, GF and Cassein Free. I get really anxious on my bad days as I am still worklng and I live in Florida so everyone is visiting this time of year. I am trying some meditation and even looked into "tapping" (of meditation kind of thing)as there was a free seminar on the internet about it. I do know stress plays a part in this so I am working at controlling that the best I can. Hang in there and know that we all have felt like we are losing our minds over this at one time or another....so in that dept. you are normal!!! It gets pretty confusing, but I know more what to do and what not to do now than I did in September...and I try to keep it manageable by just looking at what I can do today to take a step towards better health. I am heading to Texas next week to visit my grandbaby and I want to be in tip top shape so I can have fun with her. I will do the best I can and leave the rest up to something more powerful than me.
Keep us posted on your journey.
Jean

Gabes-Apg · Post by **Gabes-Apg** » Tue Mar 04, 2014 2:36 pm

Brooke. Welcome!!
Quite a few people here have multiple conditions, I am pretty confident that once you get the gut settled, and you know your mc management plan, life will be way better.

Regardless of the outcome of the scope etc, all the discussions here apply to any IBD.
Any symptom is an indication of inflammation, ongoing inflammation causes damage.
Everyone here is working on eliminating, minimising triggers of inflammation..
Take a deep breathe, relax. You can figure this puzzle out.
I won't lie and say it is easy.
It will take some time, dedicated focus, discipline/being organised, lifestyle changes, a bit of an adjustment with beliefs about nutrition and eating, patience.
The wonderful support and guidance of these people can make the puzzle easier.

Jean,
one thing I found was that I couldn't have tooo many ingredients in the one meal, and I couldn't have big meal late in the day.
Via keeping the journal I figured out I couldn't have some ingredients in the same meal. It is carrot and cauliflower. If I have one at breakfast, the other at lunch, it was fine. Both at the same time caused issues...
Enjoy your trip and being with your grand daughter. Xo

brookevale · Post by **brookevale** » Wed Mar 05, 2014 8:18 am

Another problem I've had ever since I was "poisoned" by Levaquin (it's called fluoroquinolone toxicity) 16 months ago is severe small fiber peripheral neuropathy. My feet burn and it's worse after I eat anything. I am gluten free and the weird thing is my vitamin b levels (all of them) have consistently been over the maximum and I don't even take b complex or multiple vitamins w b in them. Could this be from MC? Any research on this? Should I post this question to the main forum?

Also I never had headaches in my life until a month before the severe diarrhea came on. They are awful and range from forehead to lower back of head.

Post by **tex** » Wed Mar 05, 2014 11:40 am

Brooke,

Normally, MC causes the depletion of the B vitamins, because of a malabsorption problem in the small intestine, so that symptom is probably not connected with MC. Virtually all of the other issues that you have named, though, are commonly associated with MC, including the pancreatic issues.

I wonder if your adverse fluoroquinolone event might have possibly triggered some sort of issue whereby the tests used to measure those vitamin levels may no longer be valid for you. IOW, it might have triggered a gene response that somehow confounds the tests, resulting in false high results. I'm not even sure that's possible (and your doctors will surely claim that it's impossible), but I'm not sure that it can be ruled out.

Headaches (along with all sorts of other aches and pains) and migraines are very common symptoms of MC. I never had migraines in my life until my GI symptoms began, and after that, migraines were a major problem. Fortunately, after my gut healed, the headaches and migraines faded away, and I haven't had either one of those problems in roughly 8 or 9 years now.

I have peripheral neuropathy in my feet and legs, but it's due to gluten damage to my brain and central nervous system, as a result of years of reacting before I realized that gluten was the problem. Normally, peripheral neuropathy is caused by a vitamin B-12 deficiency (or a folic acid deficiency, since folic acid is essential for the proper utilization of vitamin B-12). The fact that peripheral neuropathy is caused by a B-12 deficiency (not by an excessive level) is the main reason why I suspect that the B vitamin tests you mentioned are no longer valid for you.

You might be able to get much more accurate results by using tissue tests rather than blood tests to detect vitamin or mineral levels. For example, the blood tests for magnesium are worthless, because the body will pull magnesium from all the cells of the body in order to maintain a normal blood level (since magnesium is an electrolyte). By the time a blood test shows magnesium to be low, the cells are so low in magnesium that a a patient may be in a life-threatening situation. Anyway, the point is, when accurate results are needed, tissue tests are typically far superior to blood tests.

Tex

Lesley · Post by **Lesley** » Wed Mar 05, 2014 11:41 am

Hi Brooke, welcome to the forum that, without a doubt saved my life. I am 2 1/2 years into this "adventure", at least since the dx. I know I had it for a few years prior to the dx, but the attacks were sporadic, and I had always had problems with my bowel, and was dx'ed with "spastic bowel" at 19.

I am C dominant, and have not had N for these 2 1/2 years (barely ever before that), but have had long periods where I have been able to overcome the C every few days, and have had formed BMs, although the neither the color nor the consistency were N.

I struggle with diet because I cannot figure out whether the addition of a certain food is causing more C? It's not cut and dried as it is with D. And I can go 3 weeks without a BM if I don't use stool softeners etc. I have gastroparesis, esophagitis and severely decreased motility in my gut. Altogether a mess. And that's only the gut problems, so I REALLY understand multiple dx's.
And C Dominant MC is the one that confuses the docs the most.

As a child adorer I don't think you are crazy. I often feel a nostalgic wish I could have that moment of birth again, and have a baby to take care of (though I know I couldn't!)
The wonderful feelings of love and joy children bring are probably what get you through the day.

People here will help you and encourage you, and will show you you are NOT crazy, though the docs make you feel maybe you are. Everything is "kosher" here, and every question valid.

brookevale · Post by **brookevale** » Wed Mar 05, 2014 12:53 pm

Thanks, Tex and Lesley. I wonder how I could get a tissue test. These doctors are worthless. I do see a naturopath now and then. I have more faith in her than any of the Western medicine docs. She thought the high b levels were due to a combo of malabsorption of my small intestine along with defective processing in my liver, which leaves the b vitamins free floating in my blood and not actually stored and absorbed properly. I wonder if MC affects the liver as well? I will need another surgery to re-route my bile duct as duodenal contents are refluxing up into my bile duct and liver (my biliary and pancreatic sphincters were sewn permanently open to treat severe sphincter of oddi dysfunction). I had an upper GI a few weeks ago and watched it all happening live on the xray. It is major surgery and the surgeon wants this potential MC stabilized prior to having that done.

Lesley, it is so hard being a sick mommy. I love my kids but pray for the day I can be the mom I used to be. I also had gastroparesis and domperidone was a wonder drug for me. I took it for 9 months last year and it resolved all the symptoms. I weaned off it and don't feel like I need it now. I do get the full feeling and nausea, but it's different. I know it's from my intestines.

:bigbighug: