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luvrdeo

By luvrdeo
in Coping with Celiac Disease

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luvrdeo Apprentice
luvrdeo
Posted

I am frustrated, and need to vent.  Let's start with that!  Here's why...in a short version - colitis is still giving me fits, so my gastro told me I'll be on pills for life.  This is unacceptable to me.  SO...I sought out a naturopath doctor, who put me on all kinds of new things...Metagenics UltraInfam shake stuff, a Theramedix digestive enzyme, and something else that I left at home dealing with Omega's.  Anyway, I've been on them all for almost a month now, and things have gotten worse with my constant D.  I'm not digesting anything.  To top it all off, I've gained some weight this year due to all the crap pills my gastro doctor had me on...and after a month of hard-core working out, my pants are STILL all too tight.  Anyone have any good advice for me?  I feel like I'm getting nowhere with all of this...why does it have to be so hard?  Ok, done feeling sorry for myself :)

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dilettantesteph Collaborator
dilettantesteph
Posted

That Natropath may have suggested something that contains gluten contamination.  I suggest a whole foods diet.  Good luck.

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user001 Contributor
user001
Posted

Well I have to say, I have tried to lose weight before being diagnosed and it was DARN NEAR IMPOSSIBLE! I have lost 60lbs for no reason over my life and gained 40 back for no reason. I have been having some digestion issues but have gotten the D under control pretty effectively. I take kyolic brand kyodophulis and I drink a protein shake that has some amino acids in it because it seems to be pretty gentle on my stomach. Eating in the morning still causes me pain but no D or C thankfully. Occasionally if i over do it like on my birthday, I will have a bout of D. I have been looking into enzymes for myself and It seems like some people don't necessarily need them and they seem to cause problems like D if you don't. My opinion is to contact all of the producers of those products to grill them about processing and shared equipment and see if you are possibly having some cross contamination issues. Discontinue the enzymes, take acidophulis or kyodophulis instead, keep the shake and omegas if they are ok to take and see if things improve in a week. Eat a whole foods diet and make sure to cook your vegetables a little bit because they can be hard for you to digest.

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luvrdeo Apprentice
luvrdeo
  • Author
Posted

When it comes to food...I've tried it all.  Doesn't seem to matter what I do or don't eat, I have constant D - the colitis is out of control.  All my veggies are either steamed or roasted, keeping them soft.  My meals consist of a shake/smoothie in the morning with fruit and some coconut or almond milk, lunch is turkey or chicken with veggies and maybe some sweet potato and a few almonds for crunch factor, and dinner is a salad with turkey or chicken and more veggies.  It can't get any cleaner.  Obviously none of what the naturopath gave me is working...even though they all state they are gluten-free products.  I've tried the acidophulis and got no results, maybe I'll try the kyoduophulis instead.  I was hoping to find a natural way to calm down the inflammation internally...

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user001 Contributor
user001
Posted

The inflammx is supposed to be good. I would keep it, try adding the kyo and removing the enzymes for a week.

 

edit to add- Have you ever used ginger? It helps with my arthritis and it is supposed to help with inflammation in general. I take about a 1 inch piece of fresh ginger put it in a blender with a cup of water and puree the whole thing. I simmer it on the stove for a few minutes, add tiny bit of honey or sugar and strain it over ice. I like to add a squeeze of lemon too because lemon is supposed to be alkaline which is good.

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SMRI Collaborator
SMRI
Posted

Many medications are plant based and basically the same thing as the "natural" stuff you get from your homeopath.  Just because they are "natural" doesn't mean they are better so you may be having the same issues on those pills because they contain the same ingredients or some of the same ingredients in the medicine from the GI doctor.  Not knowing your history, have you been tested for allergies?  I know my daughter can not eat beef or chicken so maybe that is what is causing your problems and not the medications?  She is young and should have no issues losing weight and could not lose a pound, even with a good diet and lots of exercise (she is a college athlete).  She stopped eating beef and chicken and has lost 10 lbs and is back to her ideal weight.  She still has some issues with D and is being tested for Celiacs though.  I'm pretty confident she has it since I now do and I have the genetic pairs and she has way more symptoms than I do.

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luvrdeo Apprentice
luvrdeo
  • Author
Posted

The inflammx is supposed to be good. I would keep it, try adding the kyo and removing the enzymes for a week.

 

edit to add- Have you ever used ginger? It helps with my arthritis and it is supposed to help with inflammation in general. I take about a 1 inch piece of fresh ginger put it in a blender with a cup of water and puree the whole thing. I simmer it on the stove for a few minutes, add tiny bit of honey or sugar and strain it over ice. I like to add a squeeze of lemon too because lemon is supposed to be alkaline which is good.

He told me to only be on the inflammx for a month...not sure why??  I haven't tried ginger, but know all about how it can help.  I wasn't ever sure how to include it into my day, so thank you SO much for the suggestion!  I will start on that right away.

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luvrdeo Apprentice
luvrdeo
  • Author
Posted

Many medications are plant based and basically the same thing as the "natural" stuff you get from your homeopath.  Just because they are "natural" doesn't mean they are better so you may be having the same issues on those pills because they contain the same ingredients or some of the same ingredients in the medicine from the GI doctor.  Not knowing your history, have you been tested for allergies?  I know my daughter can not eat beef or chicken so maybe that is what is causing your problems and not the medications?  She is young and should have no issues losing weight and could not lose a pound, even with a good diet and lots of exercise (she is a college athlete).  She stopped eating beef and chicken and has lost 10 lbs and is back to her ideal weight.  She still has some issues with D and is being tested for Celiacs though.  I'm pretty confident she has it since I now do and I have the genetic pairs and she has way more symptoms than I do.

I haven't been tested for allergies, it was something the naturopath and I discussed.  I too am young, athletic, healthy, and have these 10 lbs that will not go away...so, I guess I better get tested for more foods than just the gluten!  This is so helpful, I've often wondered if one of the "healthy" foods I'm eating might be what the real issue is.  What does your daughter eat for protein now?  I'm not a big pork fan, so I'd be stuck with just turkey I suppose!  :)  I hope you get some answers with her, it sure has been a frustrating journey for me getting diagnosed.

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user001 Contributor
user001
Posted

He told me to only be on the inflammx for a month...not sure why??  I haven't tried ginger, but know all about how it can help.  I wasn't ever sure how to include it into my day, so thank you SO much for the suggestion!  I will start on that right away.

The ginger drink I told you how to make it actually pretty delicious if you like ginger! Even before knowing I had celiac disease or knowing it was helpful I used to make pitchers of it for bbq's in the summer.

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SMRI Collaborator
SMRI
Posted

I haven't been tested for allergies, it was something the naturopath and I discussed.  I too am young, athletic, healthy, and have these 10 lbs that will not go away...so, I guess I better get tested for more foods than just the gluten!  This is so helpful, I've often wondered if one of the "healthy" foods I'm eating might be what the real issue is.  What does your daughter eat for protein now?  I'm not a big pork fan, so I'd be stuck with just turkey I suppose!  :)  I hope you get some answers with her, it sure has been a frustrating journey for me getting diagnosed.

She eats a lot of peanut butter, yogurt and cheese :D.  Unfortunately that doesn't help you.  Beans are good sources of protein.  She certainly has an interesting medical history and for the most part is healthy but still has some lingering issues, mostly D and migraines now so I'm thinking that Celiacs might be the last piece to the puzzle.  I'm actually really surprised she has not been tested already with everything else she has going on.

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luvrdeo Apprentice
luvrdeo
  • Author
Posted

She eats a lot of peanut butter, yogurt and cheese :D.  Unfortunately that doesn't help you.  Beans are good sources of protein.  She certainly has an interesting medical history and for the most part is healthy but still has some lingering issues, mostly D and migraines now so I'm thinking that Celiacs might be the last piece to the puzzle.  I'm actually really surprised she has not been tested already with everything else she has going on.

It took me 20 years to get them to test for celiac...so, I get that one!  I used to have major issues with headaches as well, and they have gone away 100%.  The D though...that's the battle!  I love yogurt and cheese...could totally live on that!!!  :D

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cyclinglady Grand Master
cyclinglady
Posted

If I consumed coconut or almond milk, I would have D every single day (that includes all milk products too). Perhaps you have an intolerance to either of them. Something to consider.......

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Celiac Ninja Enthusiast
Celiac Ninja
Posted

The ginger drink suggested above is a must :D Reeds ginger soda is a quickie for nausea, diarrhea, vomiting, motion sickness....yadda yadda. Probiotics like greek yogurt, which you might like, is great for gut relief. I get the Wallaby Organic low fat Greek Yogurt that's certified gluten-free.

 

We have similar gut swelling issues, mines after being glutened. Are you possibly being glutened? Cross contamination? Even spices can have gluten in them, stuff with white vinegar is iffy as well. Maybe check everything thoroughly.

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ezgoindude Explorer
ezgoindude
Posted

Sup guys,

 

I don't have much advice, as I'm a newbie in this realm of chronic inflammatory diseases, but I have one question for luvrdeo...

 

How did you doctor discover you had lymphocytic colitis?  Would you mind saying what tests provided evidence of it?

 

I ask because one thing that stood out for my new GI is my biopsy showed mild eosinophil count in a few patchy areas.  Visually I had a perfect colon.  Its frustrating since my eosinophil blood count is normal,  no pathological evidence was seen of intestinal damage but my fecal calprotection came back showing mild inflammation,  which they say could be anything, including celiac or NCGI.....

 

its crazy as I can't seem to gain any weight, stuck at 140lbs... =(

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Gemini Experienced
Gemini
Posted

If I consumed coconut or almond milk, I would have D every single day (that includes all milk products too). Perhaps you have an intolerance to either of them. Something to consider.......

This is what I was thinking too. Too much milky stuff does me in.......

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user001 Contributor
user001
Posted

The ginger drink suggested above is a must :D Reeds ginger soda is a quickie for nausea, diarrhea, vomiting, motion sickness....yadda yadda. Probiotics like greek yogurt, which you might like, is great for gut relief. I get the Wallaby Organic low fat Greek Yogurt that's certified gluten-free.

 

We have similar gut swelling issues, mines after being glutened. Are you possibly being glutened? Cross contamination? Even spices can have gluten in them, stuff with white vinegar is iffy as well. Maybe check everything thoroughly.

Reeds is amazing!!! I am so glad that I discovered ginger and that I like the taste. Its seriously helps more than NSAID's with the pain from arthritis.

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    • trents
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      By trents · Posted

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