My recovery from Coeliac Disease

[Guest]

I was born a healthy baby in Auckland NZ in February 1946. Some months later I became very ill with offensive pale stools and failure to thrive. The doctors couldn't help and i was sent to hospital where I was so weak my hands were tied to the crib to prevent me becoming exhausted through moving my arms. No diagnosis was given and I was later sent home to die. I became emaciated with huge pale offensive stools. My parents took me to a local doctor who diagnosed Coeliac Disease. He wrote a detailed prescription for my diet and told my mother that if she followed it to the letter until I was 6 years old then I would survive. She did that and by the age of 6 I was completely healthy and eating everything with the family. The diet was NOT gluten-free. It was fat-free and skim-milk powder was my main food together with vegetables, fruit and some cereal -porridge, wholemeal bread etc. When I was in my twenties I had a colonoscopy and all my Villi were normal whereas they are flattened in Coeliac disease.

[knitty kitty]

A colonoscopy looks at the colon, at the bottom end of your digestive tract.  There's no villi in your colon.

An endoscopy looks at the top of your digestive tract, including the esophagus, the stomach and part of the small intestine.  The villi grow in the small intestine.  It's these villi that are eroded away in Celiac Disease.  Celiac people have varying degrees of villi damage.  

Have you had an endoscopy to check your small intestine more recently?  

[Guest]

19 minutes ago, knitty kitty said:

A colonoscopy looks at the colon, at the bottom end of your digestive tract.  There's no villi in your colon.

An endoscopy looks at the top of your digestive tract, including the esophagus, the stomach and part of the small intestine.  The villi grow in the small intestine.  It's these villi that are eroded away in Celiac Disease.  Celiac people have varying degrees of villi damage.  

Have you had an endoscopy to check your small intestine more recently?  

No I haven't had an endoscopy since the 1980's and the result was completely normal. Yes, I meant to say endoscopy but it was 50 years ago and I forgot what they called it back then! 

[knitty kitty]

Are you having symptoms of Celiac Disease now or anytime since your endoscopy?  

[knitty kitty]

Some people are undiagnosed and have few symptoms until they are in their fifties or later.  A Celiac Diagnosis can take several years as doctors frequently make the misdiagnosis of IBS.  Celiac Disease can also affect other organs of the body, like the thyroid, pancreas, and gallbladder.  

Do you have any other concurrent autoimmune diseases?

[Guest]

16 minutes ago, knitty kitty said:

Are you having symptoms of Celiac Disease now or anytime since your endoscopy?  

I've never had any symptoms again and I'm now 77. I don't have any autoimmune diseases and in fact I don't have any diseases at all at the age off 77. The only medications I take are painkillers after a severe motor accident which destroyed my pelvis.

[trents]

I think you were misdiagnosed as a baby with celiac disease. The physician's prescribed diet would likely have done you in if you actually had celiac disease. It does not make any since to leave gluten in the diet of someone you are trying to save from celiac disease. There is still a lot of ignorance in the medical community concerning gluten disorders. Heaven only knows how much ignorance there must have been back then.

[knitty kitty]

Do you have any problems with dairy products?

[Guest]

On 11/22/2023 at 6:46 PM, trents said:

I think you were misdiagnosed as a baby with celiac disease. The physician's prescribed diet would likely have done you in if you actually had celiac disease. It does not make any since to leave gluten in the diet of someone you are trying to save from celiac disease. There is still a lot of ignorance in the medical community concerning gluten disorders. Heaven only knows how much ignorance there must have been back then.

 

On 11/22/2023 at 7:15 PM, knitty kitty said:

Do you have any problems with dairy products?

I'm fine with dairy products but I choose low fat because the full-fat dairy gives me a bit of mucous. Throughout my recovery I was given a lot of 'skim milk' powder. I was definitely not misdiagnosed. The symptoms were severe and unmistakable. I was seen by many specialists. My doctor prescribed a very detailed dietary regime which was successful. But I will leave this group now because I have no wish to argue with someone who has a closed mind. I definitely had Coeliac and I definitely recovered.

[knitty kitty]

Please don't be offended.  We're just very curious.  You have to admit your history is very unusual.  

It was brilliant of your doctor to put you on powdered skim milk.  The protein in dairy, casein, is broken down by the drying process, so it wouldn't necessarily provoke an autoimmune reaction.

Skim milk has lots of Thiamine Vitamin B 1.  Thiamine deficiency in infants can cause similar symptoms to what you described, especially the arm movements.  Thiamine deficiency often occurs in Celiac Disease.  

Your doctor's dietary regime worked!  

We're glad to have you here.  

[trents]

On 11/23/2023 at 12:14 AM, knitty kitty said:

Please don't be offended.  We're just very curious.  You have to admit your history is very unusual.  

It was brilliant of your doctor to put you on powdered skim milk.  The protein in dairy, casein, is broken down by the drying process, so it wouldn't necessarily provoke an autoimmune reaction.

Skim milk has lots of Thiamine Vitamin B 1.  Thiamine deficiency in infants can cause similar symptoms to what you described, especially the arm movements.  Thiamine deficiency often occurs in Celiac Disease.  

Your doctor's dietary regime worked!  

We're glad to have you here.  

This only suggests that actually had a problem with blunted villi from dairy casein rather than gluten. Back then there were no antibody tests for celiac disease.

[Raquel2021]

14 hours ago, notglutenfree said:

I've never had any symptoms again and I'm now 77. I don't have any autoimmune diseases and in fact I don't have any diseases at all at the age off 77. The only medications I take are painkillers after a severe motor accident which destroyed my pelvis.

I agree with Trents. You were probably misdiagnosed.  If you had celiac disease you would have known. You probably had something else.

[knitty kitty]

Doctors were doing their best.  Doctors not familiar with infantile thiamine deficiency can make a misdiagnosis.  Thiamine deficiency can coexist with other diseases.  Many of us have been misdiagnosed.  However, the treatment worked and there's a wonderful person sharing their story.

Celiac Disease genes get turned on by a stressor.  A physical illness or injury, an emotional trauma, or stressful physical activity can be triggers of Celiac Disease.  These are the same stressors that demand more Thiamine so that mitochondria can make energy, genetic instructions, and enzymes for the cells to function.  When thiamine is low, the transporters that allow only thiamine and folate into the cells shut down.  The "low thiamine - transporters off" message gets told to the genes in the cell.  Right next to the "transporters off" gene are the "Autoimmune diseases on" genes which start switching on. 

To turn the Thiamine transporters back on, Thiamine needs to get into the cells, either by passive diffusion (higher concentration outside of cell as in high dose thiamine replacement) and by using a lipid-soluble form of thiamine (benfotiamine, Allithiamine or TTFD) that gets in through the cell membranes, bypassing the transporters.  

There can be a localized thiamine deficiency in one organ, or more, causing problems in those affected.  Organs like the brain, gallbladder, pancreas, thyroid, and the gastrointestinal tract can start having difficulties functioning properly.  Symptoms can mysteriously wax and wane depending on Thiamine intake from food.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  This borderline subclinical thiamine insufficiency can continue for years.  

This research is already linked in one of my blog posts.  More information about Thiamine is available here..https://www.hormonesmatter.com/mitochondria-need-nutrients/

Happy Thanksgiving!

[Guest]

10 hours ago, Raquel2021 said:

I agree with Trents. You were probably misdiagnosed.  If you had celiac disease you would have known. You probably had something else.

What do you mean by "...you would have known"? I was a 4 month old baby! Yes, there was certainly a stressor as I was born 5 months after the end of WWII. My father was deathly ill and my mother and brother also had big problems. I didn't have 'something else' as many specialists allk agreed that it was Coeliac. There were very specific signs and symptoms.

[plumbago]

can I ask what is it you are expecting in terms of dialogue here? I don't mean to be overly direct, I apologize if it sounds harsh, but I'm not understanding the point you are trying to get across. I could guess, but for me, it'd be better to hear it from you.

[Guest]

On 11/23/2023 at 9:07 PM, plumbago said:

can I ask what is it you are expecting in terms of dialogue here? I don't mean to be overly direct, I apologize if it sounds harsh, but I'm not understanding the point you are trying to get across. I could guess, but for me, it'd be better to hear it from you.

I'm not expecting anything in terms of dialogue here. I only posted here so that my experience could encourage someone that healing from Coeliac is possible. I realise that views have been expressed here that I may not have had Coeliac disease. I have had it confirmed so many times by highly regarded specialists that it was indeed Coeliac that I have no wish or need to argue it. Therefore, my views and my experience have no place on here and it's best that I leave the forum. But I have not found a way to do that for some reason. So I will log out and not return that as is the only way I can see to do that. I hope that answers your question. 

[knitty kitty]

Adjust your email settings so you won't receive further notifications.  

[Guest]

59 minutes ago, knitty kitty said:

Adjust your email settings so you won't receive further notifications.  

Do you mean adjust my email settings here or in my mail programme?

[knitty kitty]

I believe clicking on the three bars in the top right corner brings a drop down menu, choose Account, then Manage Followed Content.  

Best wishes

[plumbago]

9 hours ago, gumnut88 said:

I'm not expecting anything in terms of dialogue here. I only posted here so that my experience could encourage someone that healing from Coeliac is possible. I realise that views have been expressed here that I may not have had Coeliac disease. I have had it confirmed so many times by highly regarded specialists that it was indeed Coeliac that I have no wish or need to argue it. Therefore, my views and my experience have no place on here and it's best that I leave the forum. But I have not found a way to do that for some reason. So I will log out and not return that as is the only way I can see to do that. I hope that answers your question. 

Yes indeed! Healing is possible. Most of the people on this thread have healed from celiac disease. I think the difference is that you say you can go back to eating gluten. I just wanted to have that clarified so we all know what the conversation is about. Most if not all of the people on here, as you may guess, would disagree. (And there are testimonials after testimonials on this site of those who have experienced horrible times after eating gluten accidentally.) I'm personally open to such a conversation but you would have to be present to have it and be receptive to follow up questions.