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Age of onset?
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How old were you when first diagnosed?
<10
0%
 0%  [ 0 ]
10 - 20
1%
 1%  [ 1 ]
10 - 20 (but symptoms appeared more than a year earlier)
3%
 3%  [ 3 ]
20 - 30
2%
 2%  [ 2 ]
20 - 30 (but symptoms appeared more than a year earlier)
3%
 3%  [ 3 ]
30 - 40
7%
 7%  [ 7 ]
30 - 40 (but symptoms appeared more than a year earlier)
8%
 8%  [ 8 ]
40 - 50
11%
 11%  [ 11 ]
40 - 50 (but symptoms appeared more than a year earlier)
7%
 7%  [ 7 ]
50 - 60
18%
 18%  [ 18 ]
50 - 60 (but symptoms appeared more than a year earlier)
13%
 13%  [ 13 ]
60 - 70
13%
 13%  [ 13 ]
60 - 70 (but symptoms appeared more than a year earlier)
10%
 10%  [ 10 ]
70 - 80
2%
 2%  [ 2 ]
70 - 80 (but symptoms appeared more than a year earlier)
0%
 0%  [ 0 ]
80 - 90
0%
 0%  [ 0 ]
80 - 90 (but symptoms appeared more than a year earlier)
0%
 0%  [ 0 ]
>90
0%
 0%  [ 0 ]
Total Votes : 98

Author Message
Lucy_B
Adélie Penguin
Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Sep 24 - 3:33 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Sat Dec 26, 2015 10:36 pm    Post subject: Reply with quote

Hi, Kim! Welcome! If opioid medication eased your symptoms, you may do well with low-dose naltrexone (LDN) in addition to your diet plan. Keep in mind, though, that it definitely can NOT be taken with with any opiate medications. I've been using it for a couple of months now. Started out with capsules but didn't notice a tremendous amount of improvement because I think I was reacting to something in the filler. Finally switched to transdermal cream about a week ago and am doing much better. For the first time in forever, almost every bathroom trip is a norman. Whoo hoo! (and knock on wood...) I know it's probably too soon to know for sure if this is a long term remedy but it certainly seems to be helping thus far. Anyway, just a thought. Glad you found this group!
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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Alchemy1
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 16 Dec 2015

Posts: 55
User's local time:
2017 Sep 24 - 2:33 AM


Food Intolerances : Gluten, oats, eggs, beef, walnuts, tomatoes, beans, cabbage, coffee, alcohol

PostPosted: Wed Feb 10, 2016 2:44 pm    Post subject: Reply with quote

Oh my, Lucy!

I was just reading your food intolerance list and was wondering just what the heck you eat!! My results from EnteroLab will soon be ready, and I'll have a good starting point for my food elimination diet. I've been sick for a very long time and am afraid the tests will show multiple food intolerances. When I noticed one food wasn't agreeing with me, I'd avoid it and eat other things. Instead of wheat, I switched to eating rice and oats. I also gave up legumes, tomatoes, broccoli, cauliflower, iceberg lettuce, cabbage, alcohol, coffee...the list goes on and on. I feel like homemade $hit and can't wait until I can get this mess under control! For the past two days I've had the worst bloat, and excruciating stomach pain, that I've ever experienced. I don't even want to eat anymore because I'm always nauseated and food makes it much worse.

My niece uses LDN for her AI disease and is doing really well with it. I'm debating about my pain meds but man...I really don't want to go back to how I was before I started using them. I was in absolute agony and was afraid that between the pain, and my CC, I'd have to quit my job. I'm on a very low dose and they monitor EVERYTHING about your medical history at every visit for refills. I have to go in once a month, pee in a cup and pay for it out of my own pocket because my insurance doesn't cover the urinalysis. I'm very, very careful with those meds and only take the ones for breakthrough pain if I'm really hurting. Still though...if I could take Advil, I'd probably tell them all to go straight to hell! I detest the whole medical community and have little use for their B.S. these days. If they would have operated on my neck seven years ago, I wouldn't have lost over 30% of the use of my right hand, and my nerves wouldn't have been crushed to the point where there's horrible, permanent damage.

There I go on my soapbox again! I sound like a broken record when I get going. I obviously have some issues I need to work on with my resentment and anger about what's happened to me. Thanks for the welcome and the advice. If I do quit the pain meds, I'll try LDN. I couldn't believe how quickly the D stopped when I started on the opioids. It was like a miracle! But when my first pain management doctor passed away, and I had a gap in my meds before I found the one I have now, I was right back to crapping a hundred times a day. It's an illusion. I'm not better, my symptoms are just masked. It's time to try a new diet cuz I'm starting to have bad symptoms again. I'll have to keep what Tex said in mind as I start to heal.
_________________
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Nancy
Adélie Penguin
Adélie Penguin
United States

Joined: 07 Jun 2011

Posts: 121
User's local time:
2017 Sep 24 - 2:33 AM


Food Intolerances : gluten, lactose

PostPosted: Wed Feb 10, 2016 3:58 pm    Post subject: Reply with quote

Alchemy 1, I was wondering the same. I am just starting to eat gluten, dairy, egg and soy free and that's hard enough :)
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7070
User's local time:
2017 Sep 24 - 6:33 PM


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

PostPosted: Thu Feb 11, 2016 1:01 pm    Post subject: Reply with quote

Kim and Nancy,
it does seem 'full on' at first to make the eating plan changes and go down to small amount of basics.

Please keep in mind that this approach to eating is ok and quite normal, current day there are many people in remote areas of third world type countries that their eating plan is based on small base of local grown seasonal items.
these people do not have health issues like heart disease, IBD's, diabetes, skin issues.

Yes it is a big change, and takes a bit of work mentally and emotionally to adapt. but once you have your safe eating plan and having days of minimal symptoms you see the changes are worth it and it is easy to stick with it.
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Alchemy1
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 16 Dec 2015

Posts: 55
User's local time:
2017 Sep 24 - 2:33 AM


Food Intolerances : Gluten, oats, eggs, beef, walnuts, tomatoes, beans, cabbage, coffee, alcohol

PostPosted: Thu Feb 11, 2016 1:55 pm    Post subject: Reply with quote

So far all I've given up is gluten. It's been really hard and I don't even know what else I'm going to have to give up yet! I have no idea how to eat this way and am winging it as I go along. My husband isn't much help, either. He doesn't understand the gluten thing and made chicken fettuccini the other night. I just pulled out a chicken breast and he was staring at my plate saying "aren't you gonna have any pasta". Oh dear. This is NOT going to be easy cuz he's a great cook!
_________________
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7070
User's local time:
2017 Sep 24 - 6:33 PM


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

PostPosted: Thu Feb 11, 2016 2:05 pm    Post subject: Reply with quote

Kim
a suggestion would be to ask your hubby to read Tex's book.

having support of loved ones/family with the the eating plan approach is fairly important
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Alchemy1
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 16 Dec 2015

Posts: 55
User's local time:
2017 Sep 24 - 2:33 AM


Food Intolerances : Gluten, oats, eggs, beef, walnuts, tomatoes, beans, cabbage, coffee, alcohol

PostPosted: Thu Feb 11, 2016 2:09 pm    Post subject: Reply with quote

Gabes,

Thanks for the encouragement!! This seems really impossible right now but I'm sure it will be worth it when I start to heal. I'm so tired and bloated this week and it's discouraging. Tex said that gluten has a fairly long half life, so I'm sure I haven't even gotten close to purging my system of it. I have the patience of Job with almost everything life hands me, but this is one thing where I'd really like some instant gratification! I just want to be well. Luckily I am a very strong person with a lot of willpower. I know I can do this but it's definitely going to involve a learning curve.
_________________
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Alchemy1
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 16 Dec 2015

Posts: 55
User's local time:
2017 Sep 24 - 2:33 AM


Food Intolerances : Gluten, oats, eggs, beef, walnuts, tomatoes, beans, cabbage, coffee, alcohol

PostPosted: Thu Feb 11, 2016 2:17 pm    Post subject: Reply with quote

Unfortunately, my husband isn't a reader so I'm going to have to educate him myself. He is listening to me but didn't make the connection between pasta and gluten. He asked me to write a list of things that have gluten in them so he'd understand what NOT to buy at the store. I'm still working on that list...
_________________
Kim "The Outhouse Polka Queen"

Raynaud's Disease, 1982
Thyroid Disease, 2007
Collagenous Colitis, 2010
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7070
User's local time:
2017 Sep 24 - 6:33 PM


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

PostPosted: Thu Feb 11, 2016 2:22 pm    Post subject: Reply with quote

there are lots of meal ideas in the Dee's kitchen area and the Meal Suggestions area

what we recommend meal wise is minimal processed foods (that is a great way to avoid gluten and other troublesome grains)
Meat and vegetables. either Roasts, or Stews, or soups or meat and well cooked vegetables. there are lots of good paleo type recipes that fall into this category, loads of meal ideas on the internet.

The ideal situation would be not to have any gluten in the house, this way there is minimal risk of contamination.
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Lucy_B
Adélie Penguin
Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Sep 24 - 3:33 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Fri Feb 19, 2016 10:29 am    Post subject: Reply with quote

Just seeing this thread! I feel your pain, Kim. It's been tough trying to get my family to understand the gluten thing, too. They just haven't the slightest clue where that pesky little substance resides, lol. It's been an extensive educational process for sure. I also fully understand the anger and resentment. That was definitely me about 6 months ago. Hang in there! It DOES get better with time and effort. As an update: The LDN cream is still working very well for me. I've had zero WD since I started using it and mostly normans. As for my diet, I'll be honest...the only thing I've been super strict with recently is gluten. I've been eating most other foods (though I do try to avoid the items on that list as much as possible). According to my Enterolab results, my gluten sensitivity was head and shoulders above the others (though they were all high), which makes me wonder if years of untreated gluten intolerance caused additional ones to develop. My hope is that by fully eliminating gluten, I will eventually kick the other sensitivities. My digestion has been great recently...hope it sticks. Best of luck to you! It takes patience and dedication, but you will find a diet/solution that works for you.
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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