Zoinks celiac , fibromyalgia, "big pill to swallow"

[Awol cast iron stomach]

After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain.

Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia.

I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case?

My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society.

Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released.

Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums.

Thanks

 

[RMJ]

I'm glad you have a diagnosis.  Fibromyalgia is recognized by western medicine, FDA has even approved several drugs for its treatment.  This article from the NIH is interesting, saying that not all doctors are familiar with it ( those are probably the ones who minimize it).   I hope your health improves now that you know what you have and can begin to do something for it.

Open Original Shared Link

[ravenwoodglass]

Now you know and can continue on the path to healing. I did acupuncture before I was finally diagnosed. It helped  a bit even still eating gluten. I have liverdo reticularis that was very pronounced prediagnosis. I was basically purple. It amazed me that when I would get done with an acupuncture session my skin would be a normal color. Natually when I went home and ate I would again turn purple.  I would also get a small amount of relief from pain. Keep at your sessions and you may want to look for a book on acupressure.  I found that to be helpful and easy to do.

I was also considered to have fibro but mine was relieved after I had been gluten and soy free for a few months. I hope that is the case for you also.

Stay strong things will get better.

[Awol cast iron stomach]

Thank you RMJ. It is helpful to hear kind/ encouraging words.

From my symptoms I likely have had (undiagnosed) fibromyalgia for over 20 years, my celiac (misdiagnosed as IBS I likely had longer) 

Additionally, in 2016 I was diagnosed with Barrett s esophagus and multiple food intolerance s as well as gluten being an issue.

Thanks for the link for the info, although for this stage of my life I'm hoping to manage it non pharmaceutical, but it is good to get the details. 

Thanks again

Awol

[Awol cast iron stomach]

6 hours ago, ravenwoodglass said:

Now you know and can continue on the path to healing. I did acupuncture before I was finally diagnosed. It helped  a bit even still eating gluten. I have liverdo reticularis that was very pronounced prediagnosis. I was basically purple. It amazed me that when I would get done with an acupuncture session my skin would be a normal color. Natually when I went home and ate I would again turn purple.  I would also get a small amount of relief from pain. Keep at your sessions and you may want to look for a book on acupressure.  I found that to be helpful and easy to do.

I was also considered to have fibro but mine was relieved after I had been gluten and soy free for a few months. I hope that is the case for you also.

Stay strong things will get better.

Thanks Ravenswood. I need the strength and encouragement to keep going. The last sessions fall out was 4 days of my body revolting on a nervous system level. 

I'll look into your acupressure book suggestion. I have done sinus acupressure for myself and my daughter for years but did not explore more. 

In the past when gluten-free my fibromyalgia symptoms improved but since they come back the concern is it might be actual fibromyalgia. 

After 2016 I found out I have Barrett s esophagus, fibromyalgia, additional food intolerance plus the gluten. I had in my head I was ncgs and it was all related to  that and leaky gut that occurred after my challenge., So I wasn't prepared to digest all the above. Pun intended.

Thanks for the encouragement

Awol

[knitty kitty]

Awol, 

Be encouraged!  There are things that will help! 

I found this article about nutrition and Berrett's esophagus.  

Open Original Shared Link

"The existing epidemiological evidence is strongest for an inverse relationship between intake of vitamin C, β-carotene, fruits and vegetables, particularly raw fruits and vegetables and dark-green, leafy and cruciferous vegetables, carbohydrates, fiber and iron and the risk of esophageal adenocarcinoma, and to a lesser degree, Barrett’s esophagus."

An inverse relationship is like a seesaw.  The more of one thing (the heavy end of the seesaw on the ground) means less of the other (the end of the seesaw in the air).  So, more fresh veggies means less symptoms.   

After a lifetime of a hodgepodge of problems, I found I benefited greatly by eating unprocessed foods and correcting vitamin deficiencies.  Celiac Disease causes malabsorption which results in malnutrition.  Celiacs often have low vitamins A, D, E and B Complex vitamins.  Sometimes the deficiencies are overlooked by physicians.  They don't recognize deficiency symptoms.  They don't value the importance of vitamins to one's health.

Here's another article about a B vitamin, a form called P5P, that helped me.  

Open Original Shared Link

Hope this helps on our journey to health.

 

 

 

[Awol cast iron stomach]

On 5/30/2017 at 11:57 AM, knitty kitty said:

Awol, 

Be encouraged!  There are things that will help! 

I found this article about nutrition and Berrett's esophagus.  

Open Original Shared Link

"The existing epidemiological evidence is strongest for an inverse relationship between intake of vitamin C, β-carotene, fruits and vegetables, particularly raw fruits and vegetables and dark-green, leafy and cruciferous vegetables, carbohydrates, fiber and iron and the risk of esophageal adenocarcinoma, and to a lesser degree, Barrett’s esophagus."

An inverse relationship is like a seesaw.  The more of one thing (the heavy end of the seesaw on the ground) means less of the other (the end of the seesaw in the air).  So, more fresh veggies means less symptoms.   

After a lifetime of a hodgepodge of problems, I found I benefited greatly by eating unprocessed foods and correcting vitamin deficiencies.  Celiac Disease causes malabsorption which results in malnutrition.  Celiacs often have low vitamins A, D, E and B Complex vitamins.  Sometimes the deficiencies are overlooked by physicians.  They don't recognize deficiency symptoms.  They don't value the importance of vitamins to one's health.

Here's another article about a B vitamin, a form called P5P, that helped me.  

Open Original Shared Link

Hope this helps on our journey to health.

Hi knitty kitty,

Thanks for the info. I completely shocked the Dr s from the Barrett s finding for I do not fit the profile nor had symptoms . It was only found during my endoscopy following gluten challenge. I will focus more on the nutritional areas you mentioned based on your link,  which is great come summer gardening wise  me luck . I bought many to grow from the group's you mentioned additionally I actually believe I crave them.

Thanks for the details on the common vitamin deficiencies my challenge unfortunately is finding products that are corn free. It's everywhere. Those darn fillers, binding agents etc. I am awaiting another response from my inquiry from a manufacturer  regarding sourcing they are quite as slow which does not appear promising. I was diagnosed with a vitamin d deficency 4 1/2 years ago but they have never tested the others you mentioned as you predicted. I do know that I know b' s seem important to  me particularly during my   m. cycle .

Thanks again.