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Zprime

I've found a key factor in ' Curing Celiac Disease '

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Oh Boy, Ready for a strange post?

Ok, so as I write this, I want to write this with an open mind, to the possibility of healing and actually curing from your Celiac, on top of that I realize everyone is different but I want to share my experience.

Lets set the clock back a year ago, I'm at Disney Land, relaxing, having a great time, but I keep getting a nagging chest pain.

I go see my Doctor, he says its most like GERD, Take some PPI's ( Nexium and a Few Others / High dose ).

I go on the PPI's for about 6 months, not really getting better, getting a bit anxious ( what if is cancer, lung disease, heart issues ect ).

So I finally beg my Doctor for an endoscopy, expecting to hear ' you have really bad gerd or an ulcer ' or something.

Surprise Surprise, I got a Triple Whammy, Hiatial Hernia ( Tiny ), Esophagitis, and Celiac Disease. Blood Test Negative, Biopsy Positive ( 5 - 10 Is the normal range, I was 16 ), Mild to Moderate Villi Blunting.

I immediately panic, what the hell? I was fine, nobody else in my family have this, and boy did I eat bread, Gluten was a staple in my life.

For the 3 months that followed I was miserable, cutting out all my favorite foods, getting constantly ' glutened ' by accident, constant all over inflammation, and suddenly IBS...

I started looking up symptoms, reading horror stories on the internet ( stomach cancer, weak bones, early death ), and to be honest it scared the absolute s$#& out of me. Here I am a 32 year old guy, Perfectly fine other than some anxiety and a bit of heart burn.

Anyways I decided to stop being a victim to my fear, and I decided Hey Maybe I'm not celiac, what If i call it a ' break my body needs '? Maybe it was stress and the PPI's? I mean stranger things could of happened right.

So I started juicing every day, intermittent fasting ( Eating 12 - 8 ), a radical diet change, and I totally gut out gluten ( or as much as I could ), I also started meditating and visualizing the light switch going off for Celiac ( I figured hey if I can turn it on, I can turn off the disease ).

A month ago I went to my doctor, complaining that I was still having symptoms even though I was gluten free, he said ' Calm down, do the gluten challenge and we'll test you for everything else in the mean time '.

So I very very cautiously ate a piece of toast, immediately panic, all over inflammation, feeling like I wanted to die. That night I was speaking to my girlfriend who's in the medical field, she said ' Zprime, You ate bread 3 times a day for years, pasta, you had a terrible diet before and none of these symptoms, yet now you are juicing, losing weight, eating healthy, and you cant even stomach a piece of bread? It's in your head '.

I went to bed that night frustrated, thinking ' what would anyone know about this horrible disease, nobody understands, the pain is real ect '.

Anyways the next morning I was dreading eating another piece of toast, but I tried something different, I meditated for 5 minutes, made a blueberry / banana shake, and said incarnations over in my head ' This bread will not hurt me, I love Gluten, I love bread '.

That day nothing happened, No pain, No heart burn, a slight bit of IBS.

Fast forward a month, I'm still eating bread, I've never felt better, healthy, happy, strong ( Probably from juicing my vegetables / positive mindset ) but overall I feel great, I feel like the old me before my horrrible diagnosis.

I did every blood / stool test under the sun, and everythings negative, livers fine, anti bodies are even lower than when I was tested Gluten free ( Was an 8, now I'm a 6 ), I asked my Doctor about another endoscopy but he said not till 1 year has passed, but I feel amazing, medically my bones are strong, I'm positive, enjoying my meals again ( although I severely limit my gluten intake, I treat it like you would candy, it's a treat not a staple ) and overall life is much better.

Now I am not speaking for everyone, I believe with some people a bread crumb will set you off, and I believe that for some people its a horrific poisoning of the body.

All I'm going to say is , How much of it is fear, anxiety, in your head? It's a shitty feeling reading every label, It's a shitting feeling thinking you are missing out on everything, but what if, what if sometimes our bodies just need a break?

I found as soon as I started a radical diet change, I changed my mindset ( less stress in life, work, relationships ) ect, 99% of my symptoms cleared up, as soon as I got over my fear of gluten the rest kind of fixed itself.

 

TLDR; Either I've come to 4 conclusions

1) I've been misdiagnosed, Was never celiac ( depsite a positive biopsy / villi blunting )

2) Some people really care cure with a break? ( There's various articles of people being gluten free and reintroducing gluten being celiac and having no reactions, Why would It come and Go ? )

3) Maybe there's something to be said about juicing, diet changes, positive life style changes?

4) Maybe just maybe I've been blessed, whether it be luck, a higher power, or just the sheer will to refuse the diagnosis, i mean if people can cure and reverse cancer why can't I with Celiac?

I'm no Doctor but I have no idea, but All I can say is I feel better now on Gluten than I did off it 6 months ago, I'm happy, healthy and ready to resume my life.

 

 

 

Edited by Zprime

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He has no idea what caused it, could be anything from medication, to stress, to sometimes we just get older and they blunten.

Where I was worried was the positive biopsy, that part is still unexplained...

I'd love to find out if more people had a positive biopsy, but were later ruled out from being ' Celiac '.

I've also been fascinated by the ' Leaky Gut ' Phenomenon, It seems the more I healed my Gut, the more I was able to tolerate Gluten. Un-sure if it's linked but perhaps once you heal leaky gut you heal Celiac ( In some people?? )

Edited by Zprime

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1 hour ago, Zprime said:

Oh Boy, Ready for a strange post?

Ok, so as I write this, I want to write this with an open mind, to the possibility of healing and actually curing from your Celiac, on top of that I realize everyone is different but I want to share my experience.

Lets set the clock back a year ago, I'm at Disney Land, relaxing, having a great time, but I keep getting a nagging chest pain.

I go see my Doctor, he says its most like GERD, Take some PPI's ( Nexium and a Few Others / High dose ).

I go on the PPI's for about 6 months, not really getting better, getting a bit anxious ( what if is cancer, lung disease, heart issues ect ).

So I finally beg my Doctor for an endoscopy, expecting to hear ' you have really bad gerd or an ulcer ' or something.

Surprise Surprise, I got a Triple Whammy, Hiatial Hernia ( Tiny ), Esophagitis, and Celiac Disease. Blood Test Negative, Biopsy Positive ( 5 - 10 Is the normal range, I was 16 ), Mild to Moderate Villi Blunting.

I immediately panic, what the hell? I was fine, nobody else in my family have this, and boy did I eat bread, Gluten was a staple in my life.

For the 3 months that followed I was miserable, cutting out all my favorite foods, getting constantly ' glutened ' by accident, constant all over inflammation, and suddenly IBS...

I started looking up symptoms, reading horror stories on the internet ( stomach cancer, weak bones, early death ), and to be honest it scared the absolute s$#& out of me. Here I am a 32 year old guy, Perfectly fine other than some anxiety and a bit of heart burn.

Anyways I decided to stop being a victim to my fear, and I decided Hey Maybe I'm not celiac, what If i call it a ' break my body needs '? Maybe it was stress and the PPI's? I mean stranger things could of happened right.

So I started juicing every day, intermittent fasting ( Eating 12 - 8 ), a radical diet change, and I totally gut out gluten ( or as much as I could ), I also started meditating and visualizing the light switch going off for Celiac ( I figured hey if I can turn it on, I can turn off the disease ).

A month ago I went to my doctor, complaining that I was still having symptoms even though I was gluten free, he said ' Calm down, do the gluten challenge and we'll test you for everything else in the mean time '.

So I very very cautiously ate a piece of toast, immediately panic, all over inflammation, feeling like I wanted to die. That night I was speaking to my girlfriend who's in the medical field, she said ' Zprime, You ate bread 3 times a day for years, pasta, you had a terrible diet before and none of these symptoms, yet now you are juicing, losing weight, eating healthy, and you cant even stomach a piece of bread? It's in your head '.

I went to bed that night frustrated, thinking ' what would anyone know about this horrible disease, nobody understands, the pain is real ect '.

Anyways the next morning I was dreading eating another piece of toast, but I tried something different, I meditated for 5 minutes, made a blueberry / banana shake, and said incarnations over in my head ' This bread will not hurt me, I love Gluten, I love bread '.

That day nothing happened, No pain, No heart burn, a slight bit of IBS.

Fast forward a month, I'm still eating bread, I've never felt better, healthy, happy, strong ( Probably from juicing my vegetables / positive mindset ) but overall I feel great, I feel like the old me before my horrrible diagnosis.

I did every blood / stool test under the sun, and everythings negative, livers fine, anti bodies are even lower than when I was tested Gluten free ( Was an 8, now I'm a 6 ), I asked my Doctor about another endoscopy but he said not till 1 year has passed, but I feel amazing, medically my bones are strong, I'm positive, enjoying my meals again ( although I severely limit my gluten intake, I treat it like you would candy, it's a treat not a staple ) and overall life is much better.

Now I am not speaking for everyone, I believe with some people a bread crumb will set you off, and I believe that for some people its a horrific poisoning of the body.

All I'm going to say is , How much of it is fear, anxiety, in your head? It's a shitty feeling reading every label, It's a shitting feeling thinking you are missing out on everything, but what if, what if sometimes our bodies just need a break?

I found as soon as I started a radical diet change, I changed my mindset ( less stress in life, work, relationships ) ect, 99% of my symptoms cleared up, as soon as I got over my fear of gluten the rest kind of fixed itself.

 

TLDR; Either I've come to 4 conclusions

1) I've been misdiagnosed, Was never celiac ( depsite a positive biopsy / villi blunting )

2) Some people really care cure with a break? ( There's various articles of people being gluten free and reintroducing gluten being celiac and having no reactions, Why would It come and Go ? )

3) Maybe there's something to be said about juicing, diet changes, positive life style changes?

4) Maybe just maybe I've been blessed, whether it be luck, a higher power, or just the sheer will to refuse the diagnosis, i mean if people can cure and reverse cancer why can't I with Celiac?

I'm no Doctor but I have no idea, but All I can say is I feel better now on Gluten than I did off it 6 months ago, I'm happy, healthy and ready to resume my life.

 

 

 

If your blood test was negative and you had been on PPIs, you probably don’t have celiac disease. Studies have shown that PPIs can cause bilious blunting. I hope that no one takes this anecdote of yours seriously and tries to “cure” their celiac disease. I’m so tired of people telling me that if I just think positive thoughts that maybe my kids will be cured. Drives me insane. Also, you need a new doctor.

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Just now, Sharz said:

If your blood test was negative and you had been on PPIs, you probably don’t have celiac disease. Studies have shown that PPIs can cause bilious blunting. I hope that no one takes this anecdote of yours seriously and tries to “cure” their celiac disease. I’m so tired of people telling me that if I just think positive thoughts that maybe my kids will be cured. Drives me insane. Also, you need a new doctor.

I'm unsure though if PPI's can cause a positive biopsy?

Is the biopsy more important than the villi? This is where it gets confusing for me and my Doctor. If the Villi were blunt thats one thing, but why would the biopsy be positive if I didn't have it?

I'm not asking you to think positive and wish it away, I'm just explaining what happened to me, I want to spread hope not misinformation or hate :) Have you tried a massive diet overhaul and perhaps a look into leaky gut for the kids ( Just a suggestion, not trying to attack ).

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1 hour ago, Zprime said:

He has no idea what caused it, could be anything from medication, to stress, to sometimes we just get older and they blunten.

Where I was worried was the positive biopsy, that part is still unexplained...

I'd love to find out if more people had a positive biopsy, but were later ruled out from being ' Celiac '.

I've also been fascinated by the ' Leaky Gut ' Phenomenon, It seems the more I healed my Gut, the more I was able to tolerate Gluten. Un-sure if it's linked but perhaps once you heal leaky gut you heal Celiac ( In some people?? )

The “ positive biopsy” is the villi blunting.  you  should wonder why you have that.  It’s not normal.  That could be caused by other things in the absence of Positive Celiac blood tests.  

Celiac is an autoimmune disorder.  It doesn’t just “ heal” and go away when you have healed your gut.  It will come back when eating gluten again.  

Edited by kareng

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What blood tests were done? Not everyone shows up positive on every test in the panel. It is possible you are experiencing the reason why doctors thought for years that celiac was a childhood disease that could be outgrown. It is now realized that some folks can go through a honeymoon period when they have healed and seem to tolerate gluten again. The body is still being damaged and be aware that the antibodies can attack any organ including the brain.

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Some people don't test positive on any of the celiac blood tests but they still have celiac disease.  The testing we have now is not 100% perfect.

The villi lining of the small intestine is like little microscopic fuzz all over the surface of the inside of the gut.  The villi absorb nutrients and even make some enzymes that help digest foods.  Biopsy samples of the villi lining are checked under a microscope for damage that is typical of celiac disease.

If you really don't have celiac disease then you have some other condition that is causing villi damage.  Villi damage leads to malabsorption and the complications from that.

There was a forum member who went back on gluten for 5 years.  She ended up needing an emergency colostomy installed.  Just be aware that celiac disease is potentially deadly and the damage it causes can lead to other disease conditions developing.  Sometimes people end up with multiple AI conditions.

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I am also curious as to the blood tests & the results of them. Will you please get a copy & post them along with their reference ranges? There are 6 tests in the full celiac serum panel. They are:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

If all of these tests had not -- have not been done on you especially in light of the inconsistencies in your tests then the doctor is not doing their job. Also, I can't tell you the # of times doctors have discounted an out of range result b/c it was not grossly out of range or there was only 1 positive on the celiac panel. A positive is a positive, even when it's only slightly positive or only 1 test in the panel comes up positive.

There is also the possibility that the lab made a mistake when doing the pathology for your biopsy. It happens. The positive could have been someone else's villi biopsy but recorded in your name which would mean that poor soul got a false negative biopsy report. Do you have your pathology report? What does it say?

You should always get & keep copies of all your medical records, especially when it comes to the tests administered.

I agree with Sharz saying you need a new doctor. Yours has obviously thrown up his/her hands & is not digging for reasons things don't add up. That is being a lazy doctor. 

Finally, there IS such a thing as "silent celiac" where the patient does not demonstrate overt symptoms when eating gluten & yet the villi damage is still being done. So you can't go on the "I eat gluten & feel fine" theory. We presently or recently had several people on this board who are silent celiacs. It's especially rough for them b/c they can't tell when they've been glutened like most celiacs can. When I first came on this site, there was a gal here who had zero symptoms of celiac disease & yet her endoscopy revealed she had NO villi left. She would not have known about this if it had not been for her sister having severe symptoms, getting tested & dx'd with celiac which prompted our gal to get tested (as should be) & finding out she was actually in far worse shape than her sister.

In conclusion, I'm saying there is a lot more investigation that needs to go on with you to get to the bottom of all these unanswered questions. You deserve to get to the bottom of them. 

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What you initially wrote was odd:

“Blood Test Negative, Biopsy Positive ( 5 - 10 Is the normal range, I was 16 )”

I have never seen a 5-10 range on an intestinal biopsy.  Your result is a 16.  Are you sure they did not run a TTG blood test after discovering villi damage while you were in the hospital?  

Edit:  wait a minute.....you wrote this on another post:

“Mild To Moderate Villi Blunting - TTGA Report 16 For Samples '( 5 - 10 Is the Normal Range ).”

Looks like a positive blood test to me.  Positive TTG and positive biopsy with mild to moderate villi blunting.  You have celiac disease.  Maybe denial?  

Edited by cyclinglady

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I think he is very confused about all this.  He didn't understand that the "positive biospy" and the "blunted villi" are the same thing.  So its hard to tell.  I believe he may have said he took PPIs, too.  So its really hard to tell if he actually has Celiac or something else.  I would like him to realize something is wrong and to try to get some help to figure it out.  Blunted villi are not normal and have to have a cause.

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Just adding these links & info.

Less than half of patients 
have GI symptoms


The classic presentation of celiac disease involves a constellation of signs and symptoms of malabsorption: diarrhea, muscle wasting, and weight loss. Other typical gastrointestinal (GI) symptoms include bloating, flatulence, and abdominal pain.

Recognizing celiac disease can be challenging, however, because <50% of patients diagnosed with celiac disease present with these classic GI symptoms.3 About 50% of celiac disease patients present with extra-intestinal symptoms, such as iron deficiency anemia, aphthous stomatitis, chronic fatigue, osteopenia, and dental enamel hypoplasia.3,8,13 Other possible non-GI symptoms include abnormal liver function test results and skin disorders such as dermatitis herpetiformis, a pruritic rash with cutaneous IgA deposits.3,8 In addition, many patients are asymptomatic.14 This highly variable clinical picture is due to the genetic and immunologic basis of the disease, extent of mucosal injury, and patients’ dietary habits, gender, and age of onset.15 A common clue that suggests a patient may have celiac disease is unexplained iron deficiency anemia that does not improve with oral iron supplementation.4,13

From:

https://www.mdedge.com/familymedicine/article/86693/gastroenterology/why-celiac-disease-so-easy-miss

 

Silent celiac

https://www.todaysdietitian.com/newarchives/050114p22.shtml

 

 

 

Celiac disease affects people differently. There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease have no symptoms at all. However, people without symptoms are still at risk for some of the complications of celiac disease. 

Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has infertility or anemia. Some people develop celiac disease as children, others as adults. 

From:

https://www.cureceliacdisease.org/symptoms/

 

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Hello Everyone

Here are my Medical Results for Anyone Interested.

https://imgur.com/a/f22ehCj

Here's why I'm not convinced it is Celiac.

 

Age 0 - 32 Fine / Gall Bladder Removal, Slight Lactose Intolerance as a Kid

2018 - ( October ) - Mild Chest Pains / Gerd / Perscribed PPIS

2018 - ( December ) - Still Gerd, Told to Double PPIS ( 8 mg a day, before Breakfast )

2019 - ( March ) Still on PPI, Endoscopy ( Results Below )

2019 - ( April ) Results / Stopped Eating Gluten

2019 - ( April to Present ) Constantly Sick, Anxious, New Symptoms Developing every day ( No symptoms before diagnosis )

2019 - ( Complete Blood Work, Stool Work, Urine , Everything under the sun ) - Perfect Health ( despite feeling like s$#& every day )

2019 ( August ) Re-introduce Gluten for Gluten Challenge, Suddenly Inflamation / IBS ( Never had this prior ) , Suddenly I have energy Again, Stools Returning to Normal

 

I'm not saying it isn't Celiac, or some form of it, But what has me suspicious is the PPI's, I was for lack of a better word Fine, perscribed a huge amount of PPI's, Then suddenly Villi damage out the wazoo and interolances to anything other than a glass of water ( Even when I'm completely empty I'm in Agony ).

 

I suspect there's more at work here, I think PPI's damaged me for the long term, I think the anxiety / stress of the diagnosis caused ulcers or inflammation, and I feel like a big mess right now.

My current Doc wants me back on Gluten, and do a full blood test in a month, everything under the sun to test and confirm Celiac, I guess we won't really know what's going on until we get that blood work, as I was really never tested for it prior. I wish I could go back in time one year and do all the blood tests.

I'm just curious if it could of been the PPIS

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30892-3/fulltext

It makes sense time line wise, Perfectly Fine, PPI's, Endoscopy ( Only because I begged for one ), damaged Villi

I'd love to have another endoscopy today and see if the villi are healed, but then I wont know if its from the 6 months being gluten free or the lack of PPIS.

 

This whole thing is just a maze of s$#& haha

123.jpg

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...looks like you have it positive IgA and biopsy damage

I will admit one thing,,you over came the pain and discomfort through will power while your immune system is still destroying it. To be honest I was numb to my pain for years til it got to a certain point and then became hyper aware after being gluten free for awhile.

Try the gluten challenge again if you want to be sure with a FULL Celiac panal after 12 weeks. If you come back positive DO NOT try to blow it off...you immune system is and will attacking your intestines. It can move to other areas....for me it changed to gluten ataxia damaging my nerves and brain. I can no longer do computer programming or complex math like I used to, it took out  the nerves to my pancreas so I can not eat carbs any more and have to take pancreas enzymes to eat...and can only eat 2 twice a day and fast. I also had loss of feeling for pain, heat, and cold in my hands for years and only recently got some of it back after being gluten free for about 6 years. I also have a whole list of foods I can not eat for these and other issues.

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That seems like a lot of damage for it to be something else, I would think.  Too bad the doc didn’t do any of the other Celiac blood work.  One of the other types might have hit a bigger positive

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You have an elevated/positive TTG IGA and a Marsh Stage 3B with brisk (most likely meaning a lot) lymphocytes.   I am not a doctor, but seems like celiac disease.  The pathologist’s report is not going to make a diagnosis.  He/she leaves that up to the GI who ordered the celiac blood test and considered the endoscopy.   I am not sure, but this maybe why you are having doubts.  This, on top of a GP doctor, who might not be celiac-savvy.  Is your GP (primary care physician) or a GI asking you to do the challenge?  If it is your GP, he is making you suffer for no reason.  

Celiacs can be asymptomatic.  Symptoms can wax and wane over a period of months, years and decades.  You can not base a celiac disease diagnosis on  symptoms alone.  

Guess what?   Lots of celiacs have bad gallbladders.  I had mine out long before my diagnosis.  Lots of celiacs are overweight.  Their bodies are trying to consume enough food because they are actually not able to absorb key nutrients as well.  Many celiacs have concurrent gastritis, liver and gallbladder issues, etc.  that usually resolve on a gluten free diet.   It is because celiac disease is systemic.  It reaches beyond the small intestine.  

The PPIs most likely did NOT cause your celiac disease.   They probably did not help.  They may have caused a bit of damage, but agin, a positive TTG and villi damage?  And yes, I was the one who gave you the Mayo link.  But that was based on the limited information you posted. You said you only had a biopsy (no blood tests).  

If I were in Las Vegas, I would bet all my chips on this one.  But....I am not a doctor and it would be wrong for me to diagnose you.  I can not.   I can strongly recommend another GI consult!  Please get some  books on celiac disease and research!  

Edited by cyclinglady

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According to the lab result you posted, the blood was taken Feb. 26, 2019. Blood is blood - taken from a vein. An endoscopic biopsy is tissue samples (tiny pieces) taken from inside your small intestine. 

I would imagine the positive blood result was what triggered the doctor to order or refer you for an endoscopy.

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