Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Things To Try...

luvrdeo

By luvrdeo
in Coping with Celiac Disease

Recommended Posts

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 :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

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

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.

luvrdeo Apprentice
luvrdeo
Posted
  • Author

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...

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.

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.

luvrdeo Apprentice
luvrdeo
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


luvrdeo Apprentice
luvrdeo
Posted
  • Author

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.

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.

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.

luvrdeo Apprentice
luvrdeo
Posted
  • Author

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

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.......

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.

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... =(

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.......

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers?
    2. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger...
    3. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...
    4. jenniber
      - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    5. RMJ
      - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means. However, the way the result is presented does look like it is below the limit of what their test can measure, so that is good.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,116
    • Most Online (within 30 mins)
      7,748
    rubyterrapin
    Newest Member
    rubyterrapin
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Blood Test for Celiac wheat type matters?

      By trents · Posted

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.