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Discouraged, and Hello (Take Two)

 
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AKLynx



Joined: 23 Sep 2017
Posts: 6
User's local time:
2017 Oct 21 - 11:18 PM


Food Intolerances : gluten, soy, coconut, milk

PostPosted: Sat Sep 23, 2017 7:59 pm    Post subject: Discouraged, and Hello (Take Two) Reply with quote

(The forum ate my original post I think).
Anyway, hello. I've been lurking for awhile now, but am working on getting over my qualms about posting about my health on the internet. :)
I've been partly gluten free since 2009--I say partly because I didn't want to admit cross contamination was an issue for me. Somewhere in there I realized that soy causes me great pain, though the lecithin and oil seemed ok, and coconut makes me nauseated. I was diagnosed with lymphocytic colitis in 2013 or 2014. My GI doctor got straight to the issue with a gastric emptying test and colonoscopy. He prescribed budesonide (generic Entocort), and it made the liquid stool stop. I did ok for the most part, the only side effect I noticed was burping and it may have slowly caused some weight gain. I still occasionally felt nauseated while eating or had crampy urgent need of the bathroom. My stool seemed more sticky than normal. After while I realized he intended for me to be on the budesionide forever. I asked about long term effects and he wasn't concerned. I asked about food and he only made a vague comment about how some adults become lactose intolerant as they get older. I did taper down to 3 mg a day, but it still concerned me.

Last year I was having some psoaz issues and my PT said my gut being in knots was half the problem, so I went to a nutritionist and she recommended a new GI also. The nutritionist put me on the Whole 30 for a month. It went ok, but I struggled with what to eat and got a bit tired of eggs and meat. I've stayed off of dairy since then, and been low gf grain--mostly rice and a little corn and an occasional gf treat. Too many sweets though I think. I saw the new GI and she approved of diet changes and said I had been on the budesonide too long--I should wean off and try pepto if I had issues. I weaned off and did ok until about February, when stress at work and at home for my fiancť started increasing, and the stress has not gone away since then, just waxed and waned. The pepto helped--it was nice that something helped with the nauseated discomfort. Stools weren't liquid but were sticky and of course black from all the pepto. At some point in April it magically got to be perfect--I hadn't had stools like that in a long time. I took one pepto a day and then had a two weeks off. I then made the mistake of feeling bad when someone tried food for me and failed and eating it with the cheese, and that broke me--it's been bad since then. I accidentally glutened myself two weeks later, and it's just been downhill. Late summer was especially bad at work, and after awhile the pepto didn't cut it and I was concerned I'd been taking it too long. I made an appointment with the GI doctor (a month out) and she prescribed Uceris in the meantime (holy cow expensive), but it's not working as well as the Entocort did.

I'm frustrated and at a loss of what to eat anymore--it's turned into a mental block and I hate cooking more than ever. The closest I've come to a diet that seems to work for me is Paleo, but using that as a frame my ideas for breakfast and lunch and snacks include a lot of eggs, nuts, and raw vegetables, which all seem to be no-nos for us. I'm also wishing I had something non-medicinal to drink or eat or take when I'm feeling crappy. Does anyone have any suggestions? A big problem is work--I tend to eat breakfast and lunch there. (Dealing with the social part of food at work is a whole other issue). Anyway, I'm sorry for the large post. Thank you for reading.
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tex
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Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:18 AM


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: Sat Sep 23, 2017 8:59 pm    Post subject: Reply with quote

Hi,

Welcome to our Internet family. Your first GI doc was realistic ó if you're going to treat this disease with meds, the only way that budesonide will work is to stay on it forever. Once you stop the treatment and then start it again, it doesn't work as well. Each stop/start cycle it becomes less effective until it will eventually stop helping. That's verified both by published research and by actual experience among the members here.

If 3 mg of budesonide per day works, you probably wouldn't have any long-term osteoporosis problems as long as you take enough vitamin D to absorb the calcium already in your diet and enough magnesium to assist insulin in transporting the calcium out of your bloodstream and into the cells of your bones, where it's needed. Vitamin D and magnesium are the key to maintaining good bone health and avoiding osteoporosis.

Pepto works, but not long-term. Stress is the Achilles heel of MC patients.

Yes, the paleo diet provides a starting place, but the fiber won't work. Raw vegetables or fruit especially, are out. Most people solve the what-to-eat dilemma by getting a stool test at Enterolab in order to verify exactly what they cannot eat. But if you prefer to bypass that step, safe meats include lamb, turkey, venison, rabbit, duck, goose, quail, antelope, etc. Pretty much any wild-type meat except bison ó almost all of them have evidence of crossing with domestic cattle in their DNA. Shrimp and shellfish are usually safe (unless you otherwise have an allergy to shellfish). Any vegetables must be peeled (to minimize fiber) and over cooked (to make them easier to digest). Nut butters may work, but the nuts themselves are usually too harsh (they're like shards of glass on our inflamed intestines). Eschew variety and concentrate on a few simple foods that you know are safe, in order to develop a recovery diet..

As for the forum eating your post, you probably clicked on the "Preview" button, rather than the "submit" button, or maybe you clicked the "Save as draft" button. If it was the "Save as draft" button, you can recover your post by clicking on one of the "View Drafts and..." buttons on the Index (login) page.

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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AKLynx



Joined: 23 Sep 2017
Posts: 6
User's local time:
2017 Oct 21 - 11:18 PM


Food Intolerances : gluten, soy, coconut, milk

PostPosted: Sat Sep 23, 2017 10:28 pm    Post subject: Reply with quote

Hi Tex--thank you for the welcome and information.
I'm a little dismayed to hear that the budesonide will stop working if I mess around with it. I had tried to make myself feel better about being back on it by telling myself I just needed a little help while I messed with diet a bit, and hopefully find some solutions to the various stressors. I'd hoped to go off it again and just use it a few months at a time when I need it. If noting else, stress is hard to control.

I've been considering the Enterolab tests, though I have to admit I'm skeptical. For one, my experience with the allergist showed that the non-anaphylactic allergies are hit or miss to pin down, and 2. I find it odd that only one lab would be able to provide accurate results--scientific method and all. Of course, you've all had good luck with it, and not much else is working for me at the moment, so it might be worth a try.

I've been having things like sweet potato and chicken sausage for breakfast--it sorta works. Lara bars seem to be one of the few things that don't bother me, but sometimes I just don't want sweet, or rice. We usually eat mostly moose, pork, and chicken, though this past year's moose wasn't very good. I'm not a fan of seafood or bananas. I'm really worried about a business trip I'm taking in two weeks. Eating while flying or driving is hard, much less the catered food at the conference and eating out.

I can only use vitamin D2 and a D3 I found recently that's made from lichen--I've tried tons of other D3 and it gives me a rash. What's the best form of magnesium to take? I had hoped to drink it. (I'd been mixing Natural calm with l-glutamine to drink in the evening, but that form of magnesium isn't gut friendly). I guess I'm tired of pills. It would be nice if I could get it someplace like Vitacost. There are so many offers on the internet it's hard to tell what's a scam and what works, not to mention the potential for outrageous shipping costs to where I live.

I've wondered--I avoid all wheat in anything including things like lip balm, shampoo, lotion, etc because it gives me a rash. Do people find they need to avoid all of their problem foods in body care products? Coconut free shampoo is really difficult to find, much less one that doesn't make my hair nasty. Not to mention toothpaste. Soy oil is in a lot of things too. I'd wondered also that if I don't notice a reaction to a form of something--soy oil for instance--if that means it's ok, or if I should avoid it altogether if a form of the food isn't ok.

I think the over all challenge is balancing fairly healthy with mild with easy with not so repetitive I feel sick with ignoring feeling left out. Anyway, I seem to be doing a brain dump here--my apologies.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:18 AM


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: Sun Sep 24, 2017 9:41 am    Post subject: Reply with quote

Everyone responds differently to budesonide. It may lose effectiveness for you slowly or quickly, but as long as you take a small amount, it should continue to retain effectiveness.

I won't bother to defend EnteroLab's integrity. Their record is impeccable. Unfortunately, allergists are only trained to use IgE and IgG-based blood tests, which can only detect classic allergies, not food sensitivities. Food sensitivities in the gut produce IgA antibodies which rarely show up in the blood. Only the EnteroLab IgA-based ELISA testing will reliably and accurately detect them. They are the only lab to do these tests because Dr. Fine holds a patent on the testing and he doesn't license any other labs to do the tests. The tests require human interpretation, so one individual (who holds a PhD in chemistry does all the testing at EnteroLab). If anyone else did the tests, they might interpret the results differently, and that would make them less accurate. It's certainly possible to recover without using the tests, they just make it much easier by removing any doubt about sensitivities.

Are you sure it isn't another ingredient in the vitamin D supplements causing the rash? Most people have to be selective about skin products when they have MC. With soy oil, reactions may depend on the luck of the draw. Some oils are purer than others. The amount used may make a difference, also. If you want to minimize the inflammation and maximize your chances of recovery, avoid soy oils and soy lecithin.

The safest form of magnesium is transdermal use by Epsom salt foot soaks or baths, or magnesium oils or lotions. Magnesium glycinate seems to be the best oral form of magnesium for most people. ReMag is effective, but more expensive and riskier.

If you're going to successfully control MC, a boring diet, eating the same foods that you know are safe, is virtually essential. We have to get over feeling sorry for ourselves and get on with our new lifestyle if we're ever going to be happy and healthy again. At least that's my opinion.

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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AKLynx



Joined: 23 Sep 2017
Posts: 6
User's local time:
2017 Oct 21 - 11:18 PM


Food Intolerances : gluten, soy, coconut, milk

PostPosted: Sun Sep 24, 2017 10:33 am    Post subject: Reply with quote

Thanks. Iíll need to save up a bit. It looks like a $1000 worth of tests.

I went through maybe 10 different brands of D3 with different ingredients. The brand with only two ingredients made the rash happen the fastest. My guess is itís the lanolin.

Yeah, Iím working on the feeling sorry for myself bit.

Thank you for the suggestions.
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tex
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Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:18 AM


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: Sun Sep 24, 2017 12:04 pm    Post subject: Reply with quote

The total cost of the test panels that most members order is $539.00 (for the A1 plus the C1 panels), when purchased as a package deal. Here's a link to what I'm talking about:

https://www.enterolab.com/StaticPages/TestInfo.aspx#PanelA1C1

It sounds like you might be right about the D3, because it seems possible that you might react to the lanolin. That's not common and it's unfortunate.

Once you get used to the routine (and the lowered expectations) MC is not so bad. It's certainly no fun to live with the disease because of the diet restrictions, but as diseases go, it could certainly be much worse. I hated it at first, but now I appreciate that it forced me to recognize some bad dietary habits and change my diet. I'm much healthier now because of that.

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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JFR
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Joined: 30 Mar 2012

Posts: 1279
User's local time:
2017 Oct 22 - 3:18 AM


Food Intolerances : gluten, dairy, soy, eggs

PostPosted: Sun Sep 24, 2017 4:00 pm    Post subject: Reply with quote

The money I spent on Enterolab testing was the best money I ever spent on health care. It is the information provided by the test results that started me on the road to recovery. It help create the incentive for me to stick to a limited diet, a diet that actually worked and allowed me to get my life back. Years later my diet is still limited but I still have my life back and my health is better than it has ever been.

Jean
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Gabes-Apg
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Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:18 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sun Sep 24, 2017 4:53 pm    Post subject: Reply with quote

welcome and sorry you are having a rough time

Quote:
I've wondered--I avoid all wheat in anything including things like lip balm, shampoo, lotion, etc because it gives me a rash. Do people find they need to avoid all of their problem foods in body care products? Coconut free shampoo is really difficult to find, much less one that doesn't make my hair nasty. Not to mention toothpaste. Soy oil is in a lot of things too. I'd wondered also that if I don't notice a reaction to a form of something--soy oil for instance--if that means it's ok, or if I should avoid it altogether if a form of the food isn't ok.


in the early stages of healing, where our bodies are super sensitive, yes, it is best to avoid contact with major triggers whether that be food based or skin contact based.
for me personally when I was super reactive, I had to avoid all moisterisers body products etc that have soy, wheat and oat.
now with a few years of healing I am not as reactive to occasional small amounts topically on my skin.

Re the entoralab tests - sorting out your safe eating plan is worth the investment, as this will be the foundation of safe eating for the rest of your life.
the alternative is to do the elimination diet, and this can take 6-9 months to do. the $650 or so investment to get onto the right eating plan and allow the body to start healing is another good reason to do it.

my suggestion is that you spend some time reading posts in the member success stories area - this will show you what others have done, what worked, (and in some posts what didn't) and how long it took etc.

Quote:
What's the best form of magnesium to take? I had hoped to drink it.

best options are
orally - Doctors Best Magnesium Glycinate or the Dr Dean ReMag liquid product
Topically - Epsom salt foot soaks /baths or magnesium oil/lotion

doing magnesium topically is well absorbed and meets your preference for minimising pills

hope this helps
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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AKLynx



Joined: 23 Sep 2017
Posts: 6
User's local time:
2017 Oct 21 - 11:18 PM


Food Intolerances : gluten, soy, coconut, milk

PostPosted: Sun Sep 24, 2017 7:11 pm    Post subject: Reply with quote

Thank you Gabes. I know I react to things like wheat germ oil in items and just avoid gluten in everything. I've not noticed reaction to touching coconut, but am not absolutely certain. I don't relish trying to find coconut free shampoo, toothpaste and laundry soap--I've looked in the past and there isn't much (I think I found a shampoo but the conditioner is bleh). I had given up after messing around with it because I had done a patch test with some coconut oil and not noticed a rash, and I wasn't seeing a clear connection otherwise.

I looked on Amazon for magnesium glyconate and ordered a bottle. I've also been taking epsom salt baths off and on for awhile, mainly for muscles, so it's nice to hear I've been doing myself some good. :)
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Gabes-Apg
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Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:18 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sun Sep 24, 2017 7:17 pm    Post subject: Reply with quote

one thing I found, as I reduced toxin load on my body, reactions to topical triggers that you have mentioned have reduced.
a good motivator to get onto the right eating plan.

1 cup of Epsom salts, 20 minute soak will give you up to 200mg elemental magnesium
ideally we need at least 400mg elemental magnesium per day.
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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AKLynx



Joined: 23 Sep 2017
Posts: 6
User's local time:
2017 Oct 21 - 11:18 PM


Food Intolerances : gluten, soy, coconut, milk

PostPosted: Fri Sep 29, 2017 3:38 pm    Post subject: Reply with quote

Will Entero lab results show for foods I'm already cutting out? Right now it's gluten, soy, milk, and coconut. I'm still not 100% sure if avoiding milk is helping. Also, will I need to quit certain medications for it? How does it work if everything is liquid? Thank you.
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tex
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Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:18 AM


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: Fri Sep 29, 2017 7:06 pm    Post subject: Reply with quote

The tests will detect sensitivity to gluten at least a year and usually 2 years after you have removed it from your diet. Sensitivities to the other foods will be detected for at least several months after removing them from your diet. It depends on how long you have been reacting. The longer you have been reacting, the easier they are to detect and the longer they can be detected. If you have been on budesonide for over 6 months, the tests might not work. You might get false negative results because corticosteroids tend to suppress the immune system. If you have selective IgA deficiency (about 1 in 500 has it), the tests won't work. They don't have a test for coconut, because that's not a common allergen. Diarrhea is OK, but dirty water is a little thin.
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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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Erica P-G
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Joined: 08 Mar 2015

Posts: 1232
User's local time:
2017 Oct 22 - 12:18 AM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Mon Oct 02, 2017 3:21 pm    Post subject: Reply with quote

Hi....here is a toothpaste that you may be ok with, and I'm sure it is at more places than Amazon - the price is correct though....I have been using it for 6 months now and find I like it, doesn't have anything icky in it including flouride (which I keep reading is not good for us regardless of what dentists say).

https://www.amazon.com/Jason-Fresh-Toothpaste-Sp...00FGDIRQ&th=1

https://www.walgreens.com/store/c/free-&-cle...od6055613-product This may be a good shampoo to consider, I have not tried it yet because I can use coconut smelling shampoos.

I read your story and feel for you, I hope you are finding some answers here.
Erica
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To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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