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Newbie- lymphocytic colitis

 
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Dexter's grandma

United States

Joined: 04 Oct 2017
Posts: 3
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : g/f, d/f, low sugar/carb, limited soy

PostPosted: Wed Oct 04, 2017 4:13 pm    Post subject: Newbie- lymphocytic colitis Reply with quote

Hello,
Thank you for this valuable resource. There is so little information out there on this topic.
I did buy the book and I am in the process of reading it.

I was diagnosed last month with Lymphocytic colitis. I have been struggling since April. A little frustrating, since I have been working so hard to live a healthy lifestyle. Eating right, exercising, etc. To my surprise I have also been told I have osteopenia despite eating properly, taking supplements and weight training. I am not yet in menopause. (age 53)

Since LC has an autoimmune component and I have osteopenia as well as OA and am lactose intolerant, my doctor wants me tested for celiac.
The thing is I have been gluten free for 3-4 years. So I am on week 4 of a gluten challenge. I don't have a lot of confidence that even if I do have celiac that the test will not give a false negative since I have been GF so long. Hopefully I am eating the proper amount for this test. So thanks to that I've added many symptoms that I didn't have before. Yay.

I noticed that gluten and dairy are listed as the top two food culprits. I don't eat those two, I limit my soy to lethecin and other minor amounts. I am low sugar/low carb (well not since the gluten challenge) So not sure where to go with the foods.

The doctor is starting me on the corticosteroid, don't have the name in front of me, that starts with a B. That is her first step. She claims it will get rid of it and I'll be done with it. That doesn't seem to back up what I've read. I don't want to start with that because I am not a person to take meds at all, except as a last resort. Besides I already have low bone density. I said I wanted to try diet and lifestyle changes first. She was a little frustrated with me.

Anyway, I look forward to learning as much as I can. Any advice is appreciated.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

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


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

PostPosted: Wed Oct 04, 2017 5:35 pm    Post subject: Reply with quote

Welcome
(and sympathies for your diagnosis and having to find us)

you are taking the right steps, reading and making your own informed decisions doctors/specialists forget that it is our bodies, our lives and we have a right to make decisions about that.

please read the forum areas/posts aimed at new people. you will see lots of good discussion points in these threads.
we have a guidelines to recovery section that brings together the 'key things' that work for the majority
also - read some of the posts in the member success stories area, this will show you what others have done, how long it took etc.

and ask questions, many here are happy to help
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

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


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

PostPosted: Wed Oct 04, 2017 5:49 pm    Post subject: Reply with quote

Meant to mention, as you read through posts/discussions you will see Magnesium and Vit D mentioned ALOT - you will pleased to know that Vit D3 and magnesium will help with osteopenia.

and not meaning to 'overwhelm' you on your first day/ first post but doing the gluten challenge for the celiac blood test is not most reliable way to confirm celiac, this post with article will explain why
http://perskyfarms.com/phpBB2/viewtopic.php?t=2...light=gluten+test
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 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: Wed Oct 04, 2017 6:01 pm    Post subject: Reply with quote

Hi,

Welcome to our Internet family. To be honest, I believe that your suspicions are correct as long as you've been GF (provided you've been 100.00 % GF), it may take a year or more of gluten challenge for you to accrue enough damage to the villi of your small intestine to qualify for an official diagnosis of Celiac disease. The requirements are ridiculously severe. Why do you want to know if you have celiac disease anyway? Celiac disease is subordinate to MC, so if you resolve the MC, the celiac disease will be automatically resolved.

Gabes is right about the poor accuracy of the celiac tests. The biggest challenge that MC patients currently face is incompetent gastroenterologists who don't understand the disease or how to treat it. You probably have non-celiac gluten sensitivity, anyway, which makes the gluten challenge a waste of time and cruel and unnecessary punishment, because your doctor doesn't have any way to diagnose non-celiac gluten sensitivity, anyway. Only the stool tests at EnteroLab can to that, and your doctor probably doesn't use or recognize those tests.

If you are soy-sensitive and you just limit soy to lecithin, that may be your problem. Soy has to be avoided 100 %, including soy lecithin and legumes. But you may have other sensitivities instead of or in addition to soy.

The osteopenia is a side effect of a chronic magnesium deficiency (which is caused by malabsorption issues due to gluten sensitivity).

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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Dexter's grandma

United States

Joined: 04 Oct 2017
Posts: 3
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : g/f, d/f, low sugar/carb, limited soy

PostPosted: Thu Oct 05, 2017 3:52 am    Post subject: Reply with quote

Thank you for your reply.

I'm not sure the osteopenia is from magnesium deficiency. My holistic doctor checks my levels regularly as well as a whole bunch of other levels. My vitamin D, magnesium and calcium are all at optimal levels, not just acceptable, using the supplements.
I have been taking vitamin D, K2 and a quality magnesium for several years now. Since my bone scan I have added the supplement Bone Up.

It was my doctor that wanted to check regarding celiac, because I have so much going on that fits. I agree, the likelihood of a false negative is very high. While I don't think I have it, I should at least check. I didn't think I had MC either, but she was spot on regarding that diagnosis. Knowing if I have it or not is important to me because it may impact my children as well. It also will put me at higher risk for several diseases including cancer. So if I need to take extra precautions I want to know. The likelihood of cross contamination in our home is probably high.

I appreciate your insights. I will work on getting the soy out completely as well. I know I react to eggs, but mainly just terrible gas.

Here we go, a new adventure awaits...
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Vanessa
Rockhopper Penguin
Rockhopper Penguin


Joined: 05 Mar 2014

Posts: 634
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, Dairy, Soy, Eggs, Nuts, night shades, Garlic, SIgA deficient
Location: Des Moines, IA

PostPosted: Thu Oct 05, 2017 6:54 am    Post subject: Reply with quote

Hi there,

Welcome to the forum. Just a note on the mag test. Unless it was a Magnesium RBC test (which also has its limitations) and you stopped mag usage for 24 hours before the test, its a moot point. I too had a naturopath testing all my minerals (mega bucks spent) and everything was o.k. The amount of symptomology I had due to mag deficiency, you would have thought I was nuts! Long story short, I was on all the primo stuff for mag supplementation but wasn't absorbing it properly nor taking near enough for all of the loss of mineral and inflammation I had going on.

Most here do well with a chelated mag glycinate but I found ReMag to be most beneficial to me. It changed my world. There is a sticky about mag at the top of the page. I require 600-750mg daily depending on symptoms of this high potency stuff. I thought I was taking enough at 400mg in pills and also using mag lotion on top of that. Just food for thought. I hope I'm not overwhelming the issue! mallet pounding head

I still have some tummy issues 2 days out of the month around ovulation and period. Hormones can do a number and the solution to this still eludes me. So if you are entering that next phase, that can also be the culprit....

Take things slow, ask us questions. But you are way ahead of the game with your diet and Vit D intake. And remember, diagnosis or not of Celiac, you are already doing what is required to decrease your risk of CA from it.......
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Vanessa
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 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: Thu Oct 05, 2017 10:45 am    Post subject: Reply with quote

The easiest way to rule out celiac disease is to check your DNA. Unless you have an HLA-DQ2 or HLA-DQ8 gene, your chances of ever being diagnosed with celiac disease are virtually zero. This is a far more accurate test for assessing your potential for developing celiac disease. If you have one of the genes, that doesn't guarantee that you will develop celiac disease, but if you don't have one of the genes it does guarantee that you can never officially develop celiac disease. Most of us don't have one of these genes, but we are highly gluten sensitive nevertheless.

I agree with Vanessa the mag test that all doctors use is virtually worthless. I had a serious magnesium deficiency that even caused heart issues, but my GP and even the ER doctors overlooked my magnesium deficiency issue that was causing all the symptoms.

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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Dexter's grandma

United States

Joined: 04 Oct 2017
Posts: 3
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : g/f, d/f, low sugar/carb, limited soy

PostPosted: Thu Oct 05, 2017 4:57 pm    Post subject: Reply with quote

Interesting...

Yes it was an RBC test, but I did not stop taking it before hand. She only had me stop the iodine before.

Actually, hormones were what I thought of first, I started tracking symptoms but found no pattern. But I still think hormones have something to do with it.

I guess I have to do a lot more reading.
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