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

What do I even do now?

lacey

By lacey
in Coping with Celiac Disease

Recommended Posts

lacey Contributor
lacey
Posted

So I'm beyond confused/frustrated/sad.

I've worked with a naturopathic doc, two acupuncturists, and an herbalist/psycotherapist. Though they have tried to help, they have only made things worse. Heck the psycotherapist said I feel ill because of my great great grandmother who passed down her stressful life experiences to me through the womb...wtf

I of course follow a gluten free diet ALWAYS as I do have Celiac. I've tried Gaps diet, Paleo diet, aip diet, and the list goes on. I've even tried an Indian Kitchari cleanse. I've had blood work done too. Apparently everything is normal according to my md. 

Everything I eat makes me feel sick and gain weight. Anxiety and depression are constant struggles and my food is not digesting properly. My only conclusion is leaky gut maybe? I'm trying so hard but don't know what to do anymore. I'm in Colorado folks...I'm even considering medical marijuana. So tired of swelling up like a darn ballon!

What do you folks eat? What should I stay away from? How am I going to handle this for the rest of my life?! Grrr 

I read the other day that if a Celiac is exposed to gluten a mere 12 times per year their chance of early death increases by 600%. I'm terrified. Can this be true???

Thanks for reading my rant/call for help. Any advice is appreciated :) xo

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

Celiac.com Sponsor (A8-M):


PDawkins Newbie
PDawkins
Posted

What worked for me was ensure. I've been battling it for about 3 months, and if it wasn't for Ensure, I'd be dead or in a hospital. 

cristiana Veteran
cristiana
Posted

Hello Lacey

I am so sorry you are going through all of this.    

Have you had an endoscopy/colonoscopy more recently?  

 

 

 

 

icelandgirl Proficient
icelandgirl
Posted

Hi Lacey,

I'm so sorry to hear of your struggle.  (((Hugs)))

Have you had your celiac antibodies tested recently to make sure that you aren't getting hidden gluten somewhere?  If you haven't, I'd start there.

If you've done that and all has checked out my next question would be if you've had your thyroid fully checked.  A lot of celiacs also have thyroid issues. 

I hope you get some answers soon.

etbtbfs Rookie
etbtbfs
Posted
On April 19, 2016 at 6:55 PM, lacey said:

So I'm beyond confused/frustrated/sad.

I've worked with a naturopathic doc, two acupuncturists, and an herbalist/psycotherapist. Though they have tried to help, they have only made things worse. Heck the psycotherapist said I feel ill because of my great great grandmother who passed down her stressful life experiences to me through the womb...wtf

I of course follow a gluten free diet ALWAYS as I do have Celiac. I've tried Gaps diet, Paleo diet, aip diet, and the list goes on. I've even tried an Indian Kitchari cleanse. I've had blood work done too. Apparently everything is normal according to my md. 

Everything I eat makes me feel sick and gain weight. Anxiety and depression are constant struggles and my food is not digesting properly. My only conclusion is leaky gut maybe? I'm trying so hard but don't know what to do anymore. I'm in Colorado folks...I'm even considering medical marijuana. So tired of swelling up like a darn ballon!

What do you folks eat? What should I stay away from? How am I going to handle this for the rest of my life?! Grrr 

I read the other day that if a Celiac is exposed to gluten a mere 12 times per year their chance of early death increases by 600%. I'm terrified. Can this be true???

Thanks for reading my rant/call for help. Any advice is appreciated :) xo

Don't trust an answer of "normal" from an MD.  Get copies of all your tests and get a book like the Lavalle book that explains what they mean.  I have no use for psychotherapists; none of them understand the biology of health problems, and the effect of health on brain function.  I can understand  your impatience; from the time I got my gluten diagnosis, it took 9 years of experimentation to get rid of nutritional problems, get hormones fixed, and get enteropathy/leaky gut healed.  I'm also in Colorado ... if your endocannabinoid system is out of whack, a low dose of MMJ can provide you respites from feeling like hell ... Just what the doctor DIDN'T (and WON'T) order!

 

lacey Contributor
lacey
Posted
  • Author

Thanks everyone! I appreciate your help so much! Has anyone here heard of Dr Axe? If not google him! I started incorporating some of his advice the last couple of days and really feel like it's helping! Fingers crossed. XO

Hobbes Rookie
Hobbes
Posted

Hi Lacey,

I sympathize with your situation, as I myself have long struggled with finding the right foods to eat. Even eating extremely clean foods like brown rice and chicken upset my system. However, I eventually did find something that works: raw foods, in their natural state. Primarily based around fresh fruits and tender leafy greens, these are very easy to digest and are high in vitamins. I have experienced a level of health that I never thought I would experience again.

Now, I don't know about the long-term viability of this diet, but in the short term it has provided me with an immense amount of relief, and has allowed my system to heal quite a bit.

Best of luck,

Hobbes

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

try food journal/elimination diet.  i have just recently had to cut out eggs (yay what a difference!!)  but it took the food journal to figure it out.  i was blaming, like, twenty other foods!  it's tricky mixing food allergies/intolerances with celiac.   a food journal will help you pinpoint the culprit.  don't panic :)

Celiac Nutritionist Newbie
Celiac Nutritionist
Posted

Hi, Lacey.   

Sounds like you have tried  a lot.   I just read the post that you have tried some of Dr. Axe's suggestions - that is great to see that they are helping!  

Have you done any specific work before with any of the other practitioners to specifically heal the gut?   

Keep us posted on the Dr. Axe protocol and don't hesitate to reach out if you have any Q's! 

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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      You're right, doctors usually only test Vitamin D and B12. Both are really important, but they're not good indicators of deficiencies in the other B vitamins. Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer. The other B vitamins can only be stored for much shorter periods of time. Pyridoxine B 6 can...
    2. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron. I wondered how it was possible that I had celiac disease...
    3. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance...
    4. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the...
    5. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,369
    • Most Online (within 30 mins)
      7,748
    Carole Eva
    Newest Member
    Carole Eva
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.