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Puzzled by a change in my MC
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sunny
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PostPosted: Mon Sep 18, 2017 9:05 pm    Post subject: Reply with quote

He Rebecca,
Dr Carolyn Dean, who sells Re-Mag has come up with a high level magnesium lotion that contains a high amount of Magnesium.
www.mareset.com/products/remaglotion
200 msg ReMagSolution per tsp lotion
This might solve your problem...
Sunny
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sunny
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PostPosted: Mon Sep 18, 2017 9:07 pm    Post subject: Reply with quote

Rebecca...
Just thought to try that email addy...went to wrong site...
Change to http://mareset.com/products/remaglotion
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Rebecca2z
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PostPosted: Tue Sep 19, 2017 6:32 pm    Post subject: Reply with quote

Thank You Sunny for that info on a great mag lotion and for the link. I will be getting that for sure ! Wow that ancient mineral oil does sting and when you have lupus sores and that stuff gets on those . well wholly cow OUCH !!! LOL


My D & new C is better today, still lots of funky noise going on though - but being very careful what I eat !! Taking all you suggested in regards to supplements...

Thanks everyone !
fonkycat
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Deb
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Joined: 20 Nov 2010

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Food Intolerances : Gluten, still determining others
Location: Minnesota

PostPosted: Wed Sep 20, 2017 4:28 pm    Post subject: Reply with quote

Rebecca, I'm glad to see you posting again (not glad you're having more issues). I was just thinking of you the other day and wondering how you were doing. Continued prayers for healing. Deb
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ldubois7
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Food Intolerances : Gluten, dairy, eggs, soy
Location: Pennsylvania

PostPosted: Wed Sep 20, 2017 7:50 pm    Post subject: Reply with quote

Enterolab does get backed up with emails.
I would call tomorrow and talk to someone about your question.
You do need an answer asap.

Best of luck!
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Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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skp
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Joined: 12 Jan 2017
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2017 Oct 18 - 6:46 AM


Food Intolerances : Gluten, dairy, eggs, soy. Diagnosed LC Jan, 2017. Chronic Hives ,an AI, Jan 2014
Location: North Carolina

PostPosted: Thu Sep 21, 2017 7:33 am    Post subject: Reply with quote

While I don't have all of the same challenges that Rebecca does, I, too have been experiencing constipation for about six weeks now.

Story: A few years before MC, I had constipation, going about 2 times per week. My internist suggested magnesium and bingo, one mag oxide at night worked. Diagnosed with MC on 1/4/17, diarrhea was now my norm. After a few months of not eating gluten, dairy, soy or eggs I was finally having Normals again every morning. I increased my magnesium with Mo Maggi Mag lotion (1 tsp=250 mg) twice a day, Doctor's Best chelated 200 mg a day and my daily vitamin 100 mg per day. My mag level was at 5.2 in May and I wanted to get it to at least 6. Also took 5000 IU of D.

We took a road trip in July and all went well except that I my BMs were infrequent which has always been my travel norm. After a few days back, I began to have a sour taste in my mouth, gradual upper gastric pain and nausea. Long story short, I ended up in the hospital for a night and day. A barium x-ray showed what was called excessive GERD. I took a PPI for short time (10 days) and then stopped and took H2 blockers instead. I hadn't seen the GI doc who scoped and diagnosed me in Jan and was finally able to see him two weeks ago. Found out he was a good guy after all, more amenable to diet and MC than I had thought. Anyway, he said the H2 blockers are fine but can lose their effectiveness after 2-3 weeks and to try to wean off of them slowly. I have done that and haven't taken any for several days now. If needed, I take Gavescon or licorice root when needed, which is seldom. The doctor said that I may have had a virus that caused my symptoms. He said the barium x-ray is not the most reliable test for GERD.

Since being in the hospital, my issue is now C! I have no cramping or bloating. I had gradually increased my fiber to include a few vegetables that I could tolerate. Now I am eating fiber galore to try to end the constipation. It seems to make little difference. If I go, it is hard and small and at least semi-forced. I drink ample water. I began taking magnesium oxide, 500 mg/day and mag citrate 400 mg/day in addition to my other magnesium routine putting me at at least 1200 mg per day. That seems like a lot and hasn't made a big difference. Last night I caved and took a Colace. I did go today and it was easier and larger but still semi-forced and hardish.

I take 1-2 Allegra a day for my chronic hives, a Xolair injection each month for the same. A probiotic which I have for a long time, Vit D, mag, multi vitamin, flax seed or fish oil, Vit K.

I know that C is a part of MC. I wonder if all of the fiber I am eating is going to back fire on me but I don't know how else to try and end the C. H2 blockers can cause constipation. Could they still be in my system? Any sage advice would be greatly appreciated. Rebecca, I have read all of your posts and think of you often, hoping that you have resolution in the very near future. What a road we travel!

Susan
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Sep 21, 2017 9:24 am    Post subject: Reply with quote

Susan,

That's a lot of magnesium. Enough to carry some health risks (possibly cardiac). If using that much magnesium and fiber doesn't do the trick, I suspect you may have intestinal motility issues. You might have to consider using low-dose amitriptyline to regulate your motility. You will need a prescription to get it I assume, but if I were in your situation, I would try 10 mg of amitriptyline daily. If that doesn't work, I would bump it up to 15 mg, but taking more that that is risky because the dose usually used to treat depression issues (75 mg and up) is very addictive. After your motility regulation becomes "reprogrammed", you may be able to stop using the amitriptyline, or use it only as needed.

I wouldn't go so far as to guarantee that this will work, but it's worth a try, because chronic constipation is very hard on your digestive system (as you are no doubt well aware).

Tex
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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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Rebecca2z
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PostPosted: Thu Sep 21, 2017 12:29 pm    Post subject: Reply with quote

Thank You so much Deb for your healing thoughts and prayers, it really means a lot at this time. pulsing hearts

Linda Thank You- that is good advice I think I will CALL Enterolab today. you rock I think dialing in some of my food allergies might help me a lot.

Susan I am sorry to hear you are having so many issues. flower smiley It is hard when the symptoms are conflicting isn't ! For myself I would be scared to try more fiber as in the past it seemed to foul me up even more and in your case it made no difference. I am glad you aren't having the cramping and bloating, which in my case is going on and I find most perplexing. It feels just like what we all feel with MC - like we need to have D but nothing comes out and its kind of scary. I don't take any of the meds for my GERD. I never had any success with them and after reading Tex's book I know that isn't the right way for me to treat my problem. When my MC was flaring the first time I had horrid GERD with it but this second round of MC the Gerd is not bad. I think that is where the Vit D, Mag and other supplements are truly helping.

It is interesting a lot of what you describe going on with your system ( having C now) is what is going on with me. Just knowing others can have both going on at the same time softens my fears. However I would welcome the D now, only because the cramping, noise and colicky feeling but being constipated is concerning.

I do agree with Tex that your magnesium routine of at least 1200 mg per day is whole lot. I hope you can get to the bottom of what is going on with your system.

About my GI appointment yesterday:

I saw my GI team at UCD yesterday, the appointment was centered on a feeding tube, a G-J tube. I have huge concerns about feeding me through my
small intestine but this is exactly what they want to do. I am out of options and they feel I should do it and treat the MC as best as we can. My weight is dangerously low and I am losing ground. They said I can have a formula that is gluten & soy free. The fat will be MCT oil and I can supplement with what ever I want or I can change what I put in the feeding tube. I looked at the ingredients in what they want to put in my feeding tube and I see some stuff that is concerning. For one there is Carrageen, now why would they put that crap in someone who has GI issues ? B S Flag There is also whey protein in it and Sodium Caseinate. The dairy is very very concerning to me so I am looking at something called Liquid Hope, which has better ingredients but also has things not nice for a MCer.

Did I say how much I hate this ? LOL - well anyway right now they want me to focus on weight gaining. If I get sick in any way I will never survive it so I know I have to get stronger and put on some weight. They put the order in for a urgent feeding tube. It will be done by interventional radiology. (Not sure when- waiting for them to call ) Of course I have second & 3rd thoughts on doing this. But I can't seem to help myself and find this all too complex.

My immune issues with APECED are the major factors with my GI system failing and the Ehlers Danlos has some part in it too. This would all be easier if MC had never come into play. But that is the case for all of us.

I have tried to help myself with going as natural as I can and it has all failed -but then again maybe it hasn't failed maybe and probably I would be in worse shape.

The GI doctor did say that with MC we shouldn't eat gluten and that the tests they do for celiac don't prove you don't have it. So they are on board with that and they felt the Enterolab test would be helpful. They do support watching diet but also attacking the MC with Budesonide and maybe using naltrexone ( to be discussed later) . They felt I was on too low of a dose of Budesonide but in light of fungal issues they said the just take 2 pills each morning for 8 weeks. I am only 89 pounds so I think I am on plenty.

More update later.

Thanks everyone for your help !

Hugs !
big big hug
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sunny
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PostPosted: Thu Sep 21, 2017 12:42 pm    Post subject: Reply with quote

Rebecca, I have no words of wisdom but just wanted to send you a hug ! I feel overwhelmed just reading about what you are going through.....6 months ago, the doc was considering ordering special liquid formula for me but I hesitated due to ingredients ....finally gave up and said I'd try Budesonide, but then I became reactive to it....you are dealing with issues so much worse than mine and knowing how difficult it was to manage my fear as I continued losing weight and seeing the impact on my heart and kidneys from all the diarrhea, I can't help but wish you health and answers! Answers!
Sunny
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Rebecca2z
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PostPosted: Thu Sep 21, 2017 1:12 pm    Post subject: Reply with quote

Aww thank You Sunny, sounds like you have felt exactly how I feel - which is OVERWHELMED !! newshocked I get that in these kinds of cases you have to over look some stuff and treat others.

I hope you have gained some weight and it is surprising how you read on line that MC causes D but its not a big deal. I have read that over and over, I think 'REALLY' not a big deal, its that weight loss that is killing me and it's from the D. When I don't have D I maintain my weight ok, granted I don't weight the 130 pounds I used to but if I could stay at 100 pounds I wouldn't need this horrid feeding tube. The MC D is a huge problem and I sure don't appreciate all the sites who make light of this weight loss due to MC.

I hope you found something that is helping you with your MC and weight loos. You said you became reactive to the Budesonide, are you trying something else? Also how are you managing your weight ?

Thank You for letting me ask some questions !
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Rebecca2z
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PostPosted: Thu Sep 21, 2017 1:23 pm    Post subject: Reply with quote

Hey Linda guess what ??? Enterolab CALLED ME !! They said as long as I am not missing IgA antibodies their tests would be valid. They are are running a special right now so I am going to be tested, I feel this is a step in the right direction. Of course this isn't a fix all, it's just another tool in my toolbox.

We all need tools right ! mallet pounding head < I could use that mallet on my own head right about now !!

You guys may have to help me interpret the results !
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Rebecca2z
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PostPosted: Thu Sep 21, 2017 3:46 pm    Post subject: Reply with quote

Look Erica I got my patches today... Wow can you believe how fast this company is !! Thank you for telling me about them !

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tex
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Joined: 24 May 2005

Posts: 30583
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Sep 21, 2017 4:43 pm    Post subject: Reply with quote

Rebecca wrote:
The GI doctor did say that with MC we shouldn't eat gluten and that the tests they do for celiac don't prove you don't have it. So they are on board with that and they felt the Enterolab test would be helpful.


There is definitely a bright future for that doctor. He or she rocks.

I agree with you that 6 mg of budesonide should be adequate. Veterinarians regulate the dose of medications by the body weight of their patients. Why can't human doctors? Maybe they can't comprehend the math. Laughing

Great news that you'll be able to do the EnteroLab tests and your doctor recognizes their value. I'm optimistic that this will bring some real progress.

Tex
_________________
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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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Rebecca2z
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PostPosted: Thu Sep 21, 2017 6:02 pm    Post subject: Reply with quote

Thank You Tex for your valuable post. I am crazy in love with this GI doctor, SHE is from Padova, Italy and very much agrees with nutrition in regards to MC, but at the same time believes in treating with the steroids until the diet can kick in. ( less suffering she says) So I am very happy I made the switch from Stanford to UC Davis, California. She even wrote to me while in Italy a couple of weeks ago as she heard I was going down hill, so I feel I have a good supporting doctor. (Also she is down to earth and sweet.)

I am anxious to the have the tests done at Enterolabs, which I will order next week.

Thank you for being optimistic for me because with all your knowledge if your optimistic I feel there could be light at the end of this dark tunnel I find myself in. iagree

Hugs,
Rebecca
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sunny
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PostPosted: Thu Sep 21, 2017 8:46 pm    Post subject: Reply with quote

Rebecca.... one of my reactions to the Budesonide is weight gain! Hah! I've gained 15 pounds...but as I tapered off, the weight is slowly coming off.
As far as what to do now? No clue! I'm scheduled to see a GI doc next week, but don't have much hope for help....fingers crossed....😇
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