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What do I even do now?

lacey

By lacey
in Coping with Celiac Disease

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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

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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

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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! 

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