New to Forum and Have Questions

Monicad · Post by **Monicad** » Wed Apr 13, 2016 8:11 am

Hello Everyone!

My name is Monica and I just recently got diagnosed with MC. A little background and sorry its going to be long! All my problems started very suddenly last August. 4 of us went out to dinner and we all got sick. Two of us on the washroom (I was one) and two of us with overheating. By the next morning we were all fine but I continued to have bouts of D. My husband suggested I was lactose intolerant again (have been before). Ok I could deal, no lactose (lots of lactose free products on the market). Well it didn't help. Still suffered from tons of heartburn, indigestion, slight nausea and bouts of D (not constant). Back and forth to the dr with lots of tests (stool, blood, ultrasound). All negative except they discovered I had a kidney cyst. Ugh. Put on prescription heartburn meds, which only helped a little. Only odd thing back was high platelet count, high white blood count and vitamin B12 deficient. Blood panel done three times over 2 month period and same results. She figured it was some sort of infection or bacteria but had no idea what as the tests were all coming up negative! Referred me to GI.

GI thought it also was some bacteria or virus I got and was suffering from lingering reactions. Meantime months later my symptoms were getting progressively worse. Back and forth between D and constipation, feeling nauseous (not really bad but enough to feel like yuk), indigestion about 2 hours after I ate anything, ears plugged and popping, headaches again a couple hours after I ate (didnt matter what I ate) and rash on either eyelids or chin. Told me to stop taking the advil for my head and heartburn meds. Put me on Probiotics and Domperidone before Christmas and it was a God sent. ALL my symptoms went away!! For about 6 weeks

Slowly they came back. Back to the GI. He couldn't understand. Decided to put me on a general run of antibiotics just to try. WELL let me tell ya. I had the most vicious D ever! Couldn't even leave the house! He told me to stop taking them immediately (obviously I had a reaction) and scheduled me for a double scope that week.

Test results showed I have MC. After reading up on it though I was stumped. My symptoms are not nearly as severe as I read most folks have. My symptoms are slightly soft stool every morning (not D) and regular every morning (once a day), bits of nausea here and there (not severe), indigestion, gassy sometimes, headache (this is now constant and my worse symptom over everything), ears still popping/plugged and rash coming and going on my face. He put me on Endocort and it helped a bit. Also on digestive Enymes which I believe helps my stomach for sure. On a whim (as I still was maintaining I was allergic to something I was eating) I started taking an antihistamine (cetirizine hydrochloride). My stomach symptom almost completely went away! Unfortunately my headaches became unbearable. Every day dull throb with some severe stabbing pains here and there. Stopped smoking, drinking coffee, cut out caffeine, cut out gluten (nothing helped). Cut various foods in and out.

Went for skin prick test this week. All negative. Wow. Food intolerance? I'm thinking so. The only things I do know... Lactose intolerant for sure (different reaction though - gas and bloating). Pretty sure intolerant to sweet potato as well as I actually react to it with gurgling and not feeling well after eating. I am pretty sure I am NOT gluten intolerant. I went off it for two months with no change. It does not bother me. I feel crappy every day though. I do not get an immediate reaction to foods so I am totally at a loss to what is upsetting me.

My next course of action: After reading multiple posts here I am going to try Magnesium! I am really hopeful it will get rid of my headaches and terrible neck aches. I would like to try a food intolerance test of some sort. Many people where I live swear by a Naturopathy clinic here that does electrodermal screening for intolerances. Read up on it a bit and it seems like a gimmick. Any feedback on this?? Some choices I originally had were the ELISHA test (hair sample) that I need to send to the UK (Cant find anywhere else they do this), Electrodermal Screening and now as I read up on these forums, I can also do stool or blood. I do live in Canada, so it seems I have to send off these results off somewhere regardless.

Any input or suggestions would be really appreciated :) I feel only people living with this can solve this as the doctors are clueless. Trial and Error I guess. I am really happy I found this site. So many different symptoms yet all familiarly the same. Sorry this post was so long!!

Thanks.

Erica P-G · Post by **Erica P-G** » Wed Apr 13, 2016 10:22 am

Hi Monica,

Welcome...and so sorry you had to find us

I started a pretty informative post http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173 beginning last May 2015.

Please start here to get a general idea of where you may be going with your diagnosis, then let the questions and answers begin!

We are all different in the way this MC has affected us, yours appears to mimic my scenario that is why I suggest you read a bit at where I began, and perhaps it will help you find your baseline in this new life you are about to embark on.

Cheers
Erica

Post by **tex** » Wed Apr 13, 2016 11:29 am

Hi Monica,

Welcome to our Internet family. You're right on target with your observation that one has to have this disease in order to actually understand it. The only gastroenterologist I am aware of who actually has MC is Dr. Kenneth Fine, the founder of EnteroLab. And that's probably why that lab's stool tests are the most reliable tests available for detecting food sensitivities, and why most of us use those tests to verify our food sensitivities. Actually, those are the only tests available anywhere in the world that we have found to be reliable (and accurate) for determining food sensitivities.

FWIW, most newly-diagnosed MC patients would swear under oath that they are not gluten-sensitive, because gluten is a very insidious and deceptive allergen, and for many of us, relatively brief GF diet trials provide misleading evidence. It took me roughly 6 months on a GF diet before I could tell when I was reacting to any particular food. Before that I seemed to react to anything and everything at random. I seemed to react to everything except gluten, and gluten was the main problem. Part of the problem is the fact that gluten (anti-gliadin) IgA antibodies have a 120-day half-life, and this tends to dominate our immune system's attention. IgA antibodies to most other foods have only about a 6-day half-life.

I too had alternating diarrhea and constipation before I figured out what was wrong with my digestive system, but that's not a common reaction mode — most patients have unrelenting diarrhea, as you have learned. All of your symptoms though, are associated with the disease. You were fortunate to recognize that antihistamines can be very beneficial in treating MC. Few people (outside of this discussion forum) are aware of that connection. Though none of this has been officially researched or documented in the medical literature, apparently most of us have varying degrees of mast cell issues associated with MC, so for multiple reasons, high histamine levels are a problem for many of us. IOW, mast cell activation disorder (MCAD) is commonly associated with MC.

There is a very good chance that if you can absorb enough magnesium (over time) to correct a likely deficiency, your headaches and neck pains should fade away.

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

Tex

Monicad · Post by **Monicad** » Thu Apr 14, 2016 7:35 am

Thank you so much for the info! Erica, I'm about half way through your thread :) lol Its great to hear someone else's journey! Tex, thank you for that info. I am really praying the magnesium will help with the headaches. As for the gluten, I was on the fence to this as despite cutting gluten out for 2 months with no results I was thinking it was quite possible it wasn't only one food I was intolerant to hence reacting still.

I believe my next course of action will be sending off some samples to EnteroLab. Also today I started a food diary. I am going to see what foods my gut may react too. My reactions are very, very hard sometimes to tell though. It could be a mild as gurgling to the feeling of fullness or indigestion or nausea. No one reaction. There are times I will not react to a food one day and the next react to the same food! Sometimes a severe headache and no gut reaction. It is so hard to tell! I do not run to the washroom so its just not clear cut.

This disease is definitely slowing me down but I refuse to let it. I will get it under control and hopefully soon :) I don't mind making sacrifices, I just need to know what they are!

crervin · Post by **crervin** » Thu Apr 14, 2016 11:05 am

Monica, so sorry you are dealing with this, hope you can get relief soon!

Monicad · Post by **Monicad** » Thu Apr 21, 2016 8:48 am

Good Morning All! Thought I would post an update.

In the last week I have changed the following with great success:
Starting taking B12 twice a day
Started taking magnesium (pill and a few sprays of oil a day)
Going off Endocort - down to 2 pills a day

What has happened :)
I have stopped feeling slightly nauseous all day. Instead I am getting a more severe reaction to foods after I eat them. This may sound worse but in fact it is much better as now I can pinpoint some reactions I am getting to certain foods! Either I react or I don't. I have discovered I get an IBS type bloating when I eat any Gluten (so yes Gluten intolerant). I get a severe reaction to eggs (damn!) I am A OK with oats and granola! Yippee. So my do not eat list is: Dairy, Gluten, Eggs, and sweet potato so far.

My headaches as now a dull pressure instead of a stabbing pain all day. This is amazing progress.
My neck stiffness has diminished greatly (this may also be due to physio once a week).
I have a ton more energy!

I am quite happy with all this. This week I am going to see if I can get into a naturopath for allergy screening. Im going to give it a try. I am also going to see if I can get a referral from my doctor for Enterolab. I want to cross reference the results. I also have an appointment with my GI next week. He would like to try me on a different med. Any suggestions on what might have helped for most? There seemed to be a lot of different options out there.

Keep you posted.

crervin · Post by **crervin** » Thu Apr 21, 2016 9:20 am

There are duck eggs or goose eggs that have a different protein from chicken eggs

.

So glad you are feeling better!

Post by **tex** » Thu Apr 21, 2016 12:19 pm

Very good progress.

To date, budesonide (Entocort) is by far the most effective medication for most MC patients. I would guess that the Pepto-Bismol treatment (8 or 9 tablets per day for 8 weeks) is probably the second most effective treatment.

Thanks for the update, and I hope that your progress continues.

Tex

Erica P-G · Post by **Erica P-G** » Thu Apr 21, 2016 12:55 pm

Tex...

Would the pepto treatment be useful in such a case as annual flares that can't seem to be gotten under control or any time a flare presents itself if one has been eating safe but other environment factors cause a disruption?

Is 8 weeks the "usual" protocol or is there a different set of guidelines one would use in those cases?

Thank you
Erica

Post by **tex** » Thu Apr 21, 2016 1:34 pm

As long as you tolerate bismuth subsalicylate well, it should be a valid option whenever needed.

The official treatment is 8 tablets (or the liquid equivalent) per day for 8 weeks (and this is how the published treatment trial was conducted), but as is the case with budesonide, if C develops then it's time to step down the dose. IOW yes, some patients find that they can get by with less, and a good rule of thumb with most medications is to use only the amount necessary in order to get the therapeutic effects desired.

8 weeks is a ballpark figure that works for most people. Some respond to treatment sooner than others. If it hasn't worked within 8 weeks, it's probably not going to be effective. Here's a link to an abstract of the original article describing the trial:

Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis.

Tex

Erica P-G · Post by **Erica P-G** » Thu Apr 21, 2016 1:54 pm

Thank you Tex,

I really feel if one can tolerate this protocol it may be a game changer during the times of year that seem to make the body more charged than usual when following their usual safe diet regarding each ones individual issues. I think this compared to budesonide I would want to try this first due to not getting 'hooked' on it by my system and therefore needing to go on the taper routine (or explain the situation to a Dr. who may not be very helpful).

I think it is time that I perhaps try this protocol....can't hurt, and I have responded to pepto in the past so perhaps this is another part of the puzzle that I add to my bag of goodies for better control and understanding during times when nothing seems work, and one starts to feel discouraged.

I feel like a continuous science experiment.....

Hugs
Erica

Post by **tex** » Thu Apr 21, 2016 2:04 pm

Yep, we have to be our own guinea pigs.

And a backup plan in reserve can do wonders for one's mood and general outlook on life.

Hugs,
Tex

Monicad · Post by **Monicad** » Thu Apr 21, 2016 3:31 pm

I have thought about other eggs and am going to look into where I may find goose eggs around here:)

As for the endocort unfortunately I have been on them my maximum time and have to come off. They were working but as soon as I reduced my dose the issues started back up. As for the pepto, I'm concerned that may not help as I don't suffer for D, just Indigestion and headaches. Sometimes C. I can always try. I will find out what my GI says. I have read several other meds have been helpful but everyone is so different.

Thanks again for input!

Gabes-Apg · Post by **Gabes-Apg** » Thu Apr 21, 2016 3:37 pm

hi there
welcome to the group
and glad to see that things are improving.

not sure how much reading you have done, what we have found is that medication and diet can have limited scope to work if you are deficient in things like Vit D - have you had your Vit D3 level checked recently? are you supplementing with Vit D3?

It is also 'early days' of you removing major triggers that you have found. and it can take time for the inflammation to settle down and for things to improve. good luck for your doctors appointment and hope the improvements keep happening

Monicad · Post by **Monicad** » Thu Apr 21, 2016 3:50 pm

Hi Gabes,

I have been taking vitamin D every day and now am taking Vitamin D3 with Calcium. I have never had my levels checked. How would one check your vitamin and mineral levels? I actually have no idea what I am deficient in except vitamin B12, which came back on blood work several months ago. I'm really just shooting in the dark with all these supplements.

My doctor I swear hates seeing me. I went to see her today to get a referral for Enterolab, which she did give me. I swear she was sleeping with her eyes open listening to me. The GP are so swamped they just dont care. She never gave me any opinions at all.

My GI is much better. He is a bit malleable though. He kinda runs with whatever I want done, lol He does listen though and finds my progress interesting. At least he is listening and puts thought into it.