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  • Kansas Bowling

    After My Celiac Disease Diagnosis, I Turned to Reishi Mushrooms for Relief

    Kansas Bowling
    5 5
    Reviewed and edited by a celiac disease expert.

      After a month – I was my old self. I now have my energy mostly back. I've been able to work and concentrate.


    A reishi mushroom. Image: CC BY 2.0--Wendell Smith
    Caption: A reishi mushroom. Image: CC BY 2.0--Wendell Smith

    Celiac.com 10/07/2020 - It has been two years now since I developed symptoms of celiac disease, and it's been a very difficult thing to go through. My symptoms first developed in August of 2018, and at first I didn't know what was wrong with me. I was losing so much weight – I got down to 87 pounds as opposed to my regular 105. I had no appetite and would have to force every meal down, even though my body kept trying to reject it. I got five cavities in my teeth in the span of six months, when prior to celiac, I had only ever had two. I had to sleep at least 14 hours every night to at least make it out of bed, but the rest of my waking hours were lethargic. I thought getting more exercise would help so I signed up for yoga classes but would have to sit out most of them because of how dizzy I felt. I would easily collapse if the position was slightly strenuous. 

    When I discovered that my symptoms could be related to celiac disease, I was relieved at first. It wasn't cancer at least. And I didn't understand how severe the disease really was. I did not get a formal diagnosis, and just stopped eating gluten, and I thought that would be the answer. Sadly, it was not.



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    The elimination of gluten got rid of the aches and pains and helped me gain my appetite back, but my energy and cognitive functioning had not changed. Once you eliminate gluten after years of being sensitive to it, and especially in those with celiac disease, it can take time for your gut to heal the damage caused by the body's autoimmune reaction to gluten. I had read that it takes most people two years to heal that initial damage, but then of course I read of horror stories from people whose fatigue never went away. 

    I was not going to let that be me. I knew there would be a solution.

    Just by chance, I watched the documentary "Fantastic Fungi." The film talked about mushrooms having medicinal properties that have not fully been explored in the medical field, and where there are different mushrooms that have cured different illnesses, and some that people use to help treat cancer. After watching, I wanted to research if there were any mushrooms helpful in aiding auto-immune diseases. That is when I happened upon an essay about reishi mushrooms and how they are currently being studied as a potential cure for all auto-immune related disorders. I immediately bought a bag of red reishi powder to try it.

    When the mushrooms arrived, I took half a teaspoon of it in my tea. I felt instant results. Suddenly my mind was sharper, in a way it hadn't been in a long time. I feared it may have been the placebo effect, but I kept it up. Half a teaspoon of powder every day in tea or smoothies. After a week, I saw myself sleeping less hours. I was able to focus, and my mood shifted for the better. After a month – I was my old self. I now have my energy mostly back. I've been able to work and concentrate. I can function off of a normal eight hours of sleep. And I am slowly but surely gaining weight. 

    I have still had some gluten accidents since then. These mushrooms have in no way prevented my gut from further harm from gluten. But when I previously got glutened, it would be a week or two stuck in bed in pain. Now, it may only be a few days in bed, followed by a week or so of fatigue. So I am still extremely careful, and don't go to restaurants unless they are very strict about cross-contamination and and a fully gluten-free kitchen. Unfortunately the mushrooms aren't a cure and haven't allowed me to deviate from my gluten-free diet, but they have changed how I feel on an average day – which has been a life changer. 

    There is no research yet on why reishi mushrooms help some people with auto-immune related fatigue, and I cannot guarantee they will work for everyone, but they have worked so well for me and have given me my life back. So I thought it was only responsible to spread the word about this magical fungus! If you have celiac disease and have had trouble getting your energy going again, I recommend that you try out reishi mushrooms. 

    *Article edited on 10/19/2020 to clarify that the author is a self diagnosed celiac.

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    I was diagnosed with celiacs in 2005. I started the diet then with good results , not having colds 8 months the year ,cognitive functions , skin crusties and aces and pains slowly going away. Then in 2018 cognitive functions started to fail me again along with aces and pains. I will try the mushrooms  thanks for this post.

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    I started eating a lot of mushrooms after seeing they were a great source of selenium, crucial in bone formation/ replenishment, because of stress fractures that would take forever to heal. My doctor said the stress fractures were likely related to the Celiac disease.
    Any excuse to eat them works for me, I'll have to find a grocery that stocks these and give them a try.

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    10 hours ago, Big Hank said:

    Any excuse to eat them works for me, I'll have to find a grocery that stocks these and give them a try.

    Big Hank, you're not likely to find them in a supermarket.  If anywhere, a big-city Asian market. But even then, they will probably be stashed behind the counter, and you will pay buku bucks.  THEY ARE NOT CHEAP.  

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    On 10/17/2020 at 4:35 PM, Big Hank said:

    I started eating a lot of mushrooms after seeing they were a great source of selenium, crucial in bone formation/ replenishment, because of stress fractures that would take forever to heal. My doctor said the stress fractures were likely related to the Celiac disease.
    Any excuse to eat them works for me, I'll have to find a grocery that stocks these and give them a try.

    I think it best to heal from celiac disease so that you can absorb the nutrients to help improve your bones.  I have osteoporosis and had fractures 7 years ago just after my diagnosis.  I am good now.  No more fractures.  A gluten free diet and plenty of weight bearing exercise did the trick.  
     

    The author of this article was  not even formally diagnosed with celiac disease.  While the mushrooms may have helped her, it is strictly anecdotal.  Those mushrooms can also cause harm.  Please talk to your doctor first.  

    Edited by cyclinglady

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    Why do you say that the author wasn't diagnosed with celiac disease? The author does say that they found out that they had celiac disease, then went gluten-free, and the diet didn't make her fully recover.

    Or that the "mushrooms can also cause harm." They have been used commonly in Asia for centuries, and can be purchased on Amazon or in multiple stores with zero warnings that they can "cause harm":

    https://www.amazon.com/Terrasoul-Superfoods-Organic-Reishi-Mushroom/dp/B00QQTW1GA/ref=sr_1_19?dchild=1&keywords=reishi+mushrooms&qid=1602022723&sr=8-19#ace-9766277718

    WebMD explains the uses and risks, and makes clear that it isn't very likely that they would cause you any lasting harm unless you are allergic to them, but you can read all of that here:

    https://www.webmd.com/vitamins-and-supplements/reishi-mushroom-uses-and-risks#1

    Of course anyone can be allergic to anything. Being allergic to something like peanuts or mushrooms doesn't mean they are harmful, it means they are only harmful to the small minority who are allergic.

    If you don't know anything about this topic, why comment on it at all? Why try to make people afraid of a mushroom that has been eaten for centuries and shown to have very positive effects on those who have tried it, and where "There is some scientific evidence of its effectiveness, including lab research and some small human studies"?

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    The author was never diagnosed with celiac disease based on her own admission I found  on her earlier January 2020 posts: 

    “Hi - found out I had celiac disease almost a year ago (but think I’ve had it for about a year and a half). My blood test came back negative but I hadn’t eaten ANYTHING four days prior cause my body was rejecting it. I didn’t do the endoscopy at the time because I wasn’t informed enough. I had to pretty much find out on my own I had it, because no doctors would believe me cause of my negative blood test.”

    and...

    “That’s been my thought this whole time but no nutritionists or celiac specialists will bother talking to me unless I have the diagnosis... it’s really tough because it’s taking me a long time to recover and I don’t have anyone to talk to... I know there could possibly be scarring on my intestines so hopefully they’ll see any of that??”

     

    It certainly sounds like Kansas Bowling could have celiac disease.  She has been on the gluten free diet and has improved.  But she probably should not declare herself as having celiac disease.  This could be misleading.  My heart goes out to those who struggle to get a diagnosis.  I was misdiagnosed for decades like so many of Celiac.com members, but when you write an article it should be truthful.   I am glad that Kansas  has improved her health.  

    I said that the author gave anecdotal advice.  I also gave anecdotal advice when I responded to comment made about the article concerning fractures and celiac disease.   I shared  my own experiences of osteoporosis/fractures  and celiac disease.  
     

    You are correct in that I know little about mushrooms.  I did do a quick search before I made my comment about risks.  Of course this does not make me an expert.  It is why I suggested the poster to talk to his doctor.  
     

    There are risks noted in WebMD link you provided about the reishi mushrooms besides allergies:

    “It can also cause:

    Dizziness

    Itchiness

    Rash

    Headaches

    Stomach upset

    Nosebleed

    Bloody stools

    Risks. Taking reishi mushroom may be riskier if you have low blood pressure or are taking therapy to raise your blood pressure, are taking diabetes medications, or have immune system disorders or medications.”

     

     

     

    Edited by cyclinglady

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    WebMD makes it clear that there is scientific evidence that reishi mushrooms can be effective for many things: "There is some scientific evidence of its effectiveness, including lab research and some small human studies," and "Medicinal mushrooms have been approved adjuncts to standard cancer treatments in Japan and China for more than 30 years and have an extensive clinical history of safe use as single agents or combined with chemotherapy."

    Also, Celiac.com authors do not need to be diagnosed celiacs in order to contribute helpful articles, or to participate in our forum--this is not a private club--all are welcome here to participate in discussions or submit articles. In fact, we've been publishing articles by non-celiac researchers, self diagnosed celiacs, and those who are gluten sensitive for 25 years, so I'm not sure why you believe that this makes any difference with regard to this article? Many of the scientists who do celiac disease research are not celiacs.

    The article is, of course, one person's experience with reishi mushrooms and how it helped her regain her mental focus. There is no doubt that whether you are celiac or just gluten sensitive that brain fog is a very common symptom, and one that may not just go away with a gluten-free diet. Clearly this article is helpful to those who are experiencing this symptom, or other symptoms that reishi mushrooms may help to relieve. 

    Our readers can make their own choices with regard to this article, and can try them or not, but we are simply presenting our readers with information that may be helpful to them, as we've done for 25 years, and will continue to do.

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    Not all supplements fit all people.  I totally support trial and error.  There's other mushrooms or try a combo supplement with chaba. As in trial and error.  Dose up on amino acids and vitamins. B-6, B12 good size doses helps in many areas of the body and mind. 

    Celiacs are self Holistic/Homeopathys. I just wish there was a free way to get tests done for amino and vitamin levels. As a celiac your most likely always on the downside.  

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  • About Me

    Kansas Bowling is an actress and filmmaker living in Los Angeles, CA. She directed the slasher movie B.C. Butcher and acted as a Manson girl in Quentin Tarantino's Once Upon A Time in Hollywood. She has had celiac disease for two years. Her web site is: kansas-bowling.com


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