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

I'm So Excited!

thleensd

By thleensd
in Coping with Celiac Disease

Recommended Posts

thleensd Enthusiast
thleensd
Posted

Especially for those who have had a long recovery:

I've been strictly gluten-free for two years and five months. When I went gluten-free I went from mostly bed-ridden to sort of being able to function. For the next two years I got a little better, but still had debilitating fatigue. I had to stop working and have family members care for me. We all have been eating a very healthy diet (gluten-free house), and started to drink more fresh juice and veggie smoothies. Tried a few elimination diets and settled on corn-free as well. I stopped eating *most* processed foods, but still was cooking with Bob's Red Mill flours and a few other products like tinkyada pasta. I still wasn't improving. It was as it there was a ceiling on my getting better. I have been in physical therapy (since my body was pretty wrecked from the whole ordeal), but not able to make process since my fatigue was so persistent. I've looked into MANY of the healing diets so many here speak of, and....

...I found something that seems to be working for me! I have been completely grain-free (and pseudo-grain-free...ie buckwheat, etc) now for 44 days. I also go easy on beans and potatoes, though I still eat those at times. In this time my stamina has already increased dramatically. I've been able to cook, load and unload the car, concentrate to do errands and pay bills, play frisbee and even dance. Not all the time, but more often. I went on a hike yesterday long enough to get sunburned (duh! skin hasn't seen that much sun for a while). I still need to be careful with my activities since my muscles haven't caught up to my energy level and my back and hips are pretty messed up (read: painfully slips out of place) I will be increasing my physical therapy dramatically starting in about two weeks, and am hopeful that my muscles will actually build now! Fingers are crossed, wish me luck!

I just wanted to share my excitement and give some encouragement to those who are still trying to find their personal magic combination of what to eat and what to avoid. I've gotten a lot of inspiration and recipes from the raw diet people and the paleo (caveman) diet people.

=) =) =) =)

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

Celiac.com Sponsor (A8-M):


Harpgirl Explorer
Harpgirl
Posted

That is so cool! :D I'm so glad that you have found something that works for you! I can only imagine how frustrated you have felt till now. Fortunately, I haven't had quite so severe a reaction to gluten that you and some of the other posters here have had. But it sure feels good to start going toward 100% doesn't it? Congrats and keep it up!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Congrats! You may already know this but i had to comment that Bob's Red Mill products give several others on this board trouble. We have concluded that it is because we are also sensitive to all oats (even certified gluten-free oats) and since BRM gluten-free products are made in the same facility as gluten-free oats we get sick from all Bob's Red Mill gluten-free products. Might just be somehtign for you to think about. You may just be super sensitive to cc. Keep up the good work of eating clean and healthy though! It's great to feel good again isn't it?

thleensd Enthusiast
thleensd
Posted
  • Author

Congrats! You may already know this but i had to comment that Bob's Red Mill products give several others on this board trouble. We have concluded that it is because we are also sensitive to all oats (even certified gluten-free oats) and since BRM gluten-free products are made in the same facility as gluten-free oats we get sick from all Bob's Red Mill gluten-free products. Might just be somehtign for you to think about. You may just be super sensitive to cc. Keep up the good work of eating clean and healthy though! It's great to feel good again isn't it?

Yeah... I saw my GI doc a couple weeks in and the possibility of it being oats was her comment too... though I'm not 100% sure she gets it. I wished she would've suggested it a year ago. =b

Whatever it is, this is working. I just don't know if I'll be able to start introducing things back in to see or if I'm going to be life-long grain free. I of course can live without them, I just wouldn't want to miss out on rice and buckwheat for the rest of my life if I don't have to!

I definitely think I'm one of the super-sensitives, though.

Skylark Collaborator
Skylark
Posted

Congrats! I'm so happy to hear you have found what works!

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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.