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

Recommended Posts

lacey Contributor

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

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

Hello Lacey

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

Have you had an endoscopy/colonoscopy more recently?  

 

 

 

 

icelandgirl Proficient

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
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

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

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

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

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.

  • 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 replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Celiac disease symptoms

    2. - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Celiac disease symptoms

    3. - trents replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Celiac disease symptoms

    4. - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Celiac disease symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,058
    • Most Online (within 30 mins)
      7,748

    Maggie Berger
    Newest Member
    Maggie Berger
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Churro
      Thanks for your input. 
    • trents
      If you have hemorrhoids 1x weekly I don't see how you have time to heal from one episode before you experience another one, unless each one is a very minor event. Have you consulted a physician about your hemorrhoid issue? It's not normal to be having an episode every week unless it is really one episode that is not completely healing between weekly flareups.
    • Churro
      No I haven't had one since 2021. I rarely have more than 1 per week. 
    • trents
      Sorry, I see that now as I reread your original post. You say you have hemorrhoids "only once a week" now. When I develop hemorrhoids, which is once every few years now, it generally takes 3-4 days for healing to take place. So, it doesn't seem like you could have much relief time between episodes if you have them weekly. Have you had a lower GI scoping done recently?
    • Churro
      Everyday I eat a medium to large apple in the morning and a large banana at night. I eat a cup of oatmeal in the evening. The ezekiel wheat bread I eat has a good amount of fiber. I haven't dealt with constipation for at least a year. Most of the time my feces are soft. 
×
×
  • 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.