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. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,800
    • Most Online (within 30 mins)
      7,748

    CPeck
    Newest Member
    CPeck
    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

    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • 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.