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What do I even do now?


lacey

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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


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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


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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! 

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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