Does this sound like coeliac disease?

[Russ H]

I wonder if anyone here can help me?

I am male, early 50s.

Previously fit, healthy and active. 20 years ago, I experienced a sudden-onset flu-like illness that left me very ill and bed-bound for a week with fever, diarrhoea, reflux, bloating and burping. Over the following 3 years, I mostly recovered and subsequently learned to live with the remaining symptoms until last year when my dentist told me that my teeth had been damaged by reflux. This prompted me to try again to identify what is wrong with me, and is how I came across coeliac disease as a possible cause. These are the signs and symptoms I have been experiencing. These all started suddenly 20 years ago during the initial illness and have been present to vary degrees ever since. I had excellent health and no symptoms previously.

 

1. Bloating and burping. Constant burping (other people have noticed this). My upper abdomen tends to bulge there is so much gas.

2. Reflux. During the day I can burp but at night, gas forces stomach contents up my oesophagus. This has eroded my tooth enamel.

3. Very loose, sticky, foul-smelling stools that are difficult to flush and clean up. They mark the pan under the water line and need toilet cleaner to remove, which makes me suspect they are fatty.

4. Fatigue. During the first 3 years, this was terrible. It has improved but not completely gone away. I suspect that I have just become accustomed to it.

5. Weight loss. I was a runner and lean but lost at least 10 kg - fat and muscle. I met an old friend who was horrified and said I looked emaciated.

6. Brain fog. It comes and goes. Sometimes even conversing is difficult.

7. Milk intolerance. Small amounts of cheese are fine but milk makes me very ill, causing severe bloating, reflux and diarrhoea that lasts 3 days.

8. Body odour. I am very clean but developed a strong body odour that numerous people have commented upon. When I exercise, my clothing stinks of sweaty socks afterwards.

 

I have been on a strict gluten-free diet for 4 weeks now. I began to notice improvements in less than a week. By 14 days, I begin to have normal bowel movements - the 1st for 20 years. By 28 days, the bloating has improved and reflux stopped. My body odour has gone, and I have stopped having fatty stools. I have put on several kg during this time. I wonder if I have coeliac disease and the problem I have with milk is actually a lactose intolerance secondary to this.

Has anyone experienced anything like this? I have had several consultations with GPs but no helpful diagnosis or suggestions.

 

Russ

[cristiana]

  On 5/2/2021 at 12:58 PM, Russ314 said:

I wonder if anyone here can help me?

I am male, early 50s.

Previously fit, healthy and active. 20 years ago, I experienced a sudden-onset flu-like illness that left me very ill and bed-bound for a week with fever, diarrhoea, reflux, bloating and burping. Over the following 3 years, I mostly recovered and subsequently learned to live with the remaining symptoms until last year when my dentist told me that my teeth had been damaged by reflux. This prompted me to try again to identify what is wrong with me, and is how I came across coeliac disease as a possible cause. These are the signs and symptoms I have been experiencing. These all started suddenly 20 years ago during the initial illness and have been present to vary degrees ever since. I had excellent health and no symptoms previously.

 

1. Bloating and burping. Constant burping (other people have noticed this). My upper abdomen tends to bulge there is so much gas.

2. Reflux. During the day I can burp but at night, gas forces stomach contents up my oesophagus. This has eroded my tooth enamel.

3. Very loose, sticky, foul-smelling stools that are difficult to flush and clean up. They mark the pan under the water line and need toilet cleaner to remove, which makes me suspect they are fatty.

4. Fatigue. During the first 3 years, this was terrible. It has improved but not completely gone away. I suspect that I have just become accustomed to it.

5. Weight loss. I was a runner and lean but lost at least 10 kg - fat and muscle. I met an old friend who was horrified and said I looked emaciated.

6. Brain fog. It comes and goes. Sometimes even conversing is difficult.

7. Milk intolerance. Small amounts of cheese are fine but milk makes me very ill, causing severe bloating, reflux and diarrhoea that lasts 3 days.

8. Body odour. I am very clean but developed a strong body odour that numerous people have commented upon. When I exercise, my clothing stinks of sweaty socks afterwards.

 

I have been on a strict gluten-free diet for 4 weeks now. I began to notice improvements in less than a week. By 14 days, I begin to have normal bowel movements - the 1st for 20 years. By 28 days, the bloating has improved and reflux stopped. My body odour has gone, and I have stopped having fatty stools. I have put on several kg during this time. I wonder if I have coeliac disease and the problem I have with milk is actually a lactose intolerance secondary to this.

Has anyone experienced anything like this? I have had several consultations with GPs but no helpful diagnosis or suggestions.

 

Russ

Expand Quote  

Hello Russ

Welcome to the forum.  

It certainly sounds as if coeliac disease is a real possibility.  Over time I've had all but no. 8 of the symptoms you mention.

When you say you have not been offered a helpful diagnosis, have you been offered any tests whatsoever?

Cristiana

 

Edited May 2, 2021 by cristiana
omission - "no. 8", rather than just "8".

[trents]

  On 5/2/2021 at 12:58 PM, Russ314 said:

I wonder if anyone here can help me?

I am male, early 50s.

Previously fit, healthy and active. 20 years ago, I experienced a sudden-onset flu-like illness that left me very ill and bed-bound for a week with fever, diarrhoea, reflux, bloating and burping. Over the following 3 years, I mostly recovered and subsequently learned to live with the remaining symptoms until last year when my dentist told me that my teeth had been damaged by reflux. This prompted me to try again to identify what is wrong with me, and is how I came across coeliac disease as a possible cause. These are the signs and symptoms I have been experiencing. These all started suddenly 20 years ago during the initial illness and have been present to vary degrees ever since. I had excellent health and no symptoms previously.

 

1. Bloating and burping. Constant burping (other people have noticed this). My upper abdomen tends to bulge there is so much gas.

2. Reflux. During the day I can burp but at night, gas forces stomach contents up my oesophagus. This has eroded my tooth enamel.

3. Very loose, sticky, foul-smelling stools that are difficult to flush and clean up. They mark the pan under the water line and need toilet cleaner to remove, which makes me suspect they are fatty.

4. Fatigue. During the first 3 years, this was terrible. It has improved but not completely gone away. I suspect that I have just become accustomed to it.

5. Weight loss. I was a runner and lean but lost at least 10 kg - fat and muscle. I met an old friend who was horrified and said I looked emaciated.

6. Brain fog. It comes and goes. Sometimes even conversing is difficult.

7. Milk intolerance. Small amounts of cheese are fine but milk makes me very ill, causing severe bloating, reflux and diarrhoea that lasts 3 days.

8. Body odour. I am very clean but developed a strong body odour that numerous people have commented upon. When I exercise, my clothing stinks of sweaty socks afterwards.

 

I have been on a strict gluten-free diet for 4 weeks now. I began to notice improvements in less than a week. By 14 days, I begin to have normal bowel movements - the 1st for 20 years. By 28 days, the bloating has improved and reflux stopped. My body odour has gone, and I have stopped having fatty stools. I have put on several kg during this time. I wonder if I have coeliac disease and the problem I have with milk is actually a lactose intolerance secondary to this.

Has anyone experienced anything like this? I have had several consultations with GPs but no helpful diagnosis or suggestions.

 

Russ

Expand Quote  

Welcome to the forum, Russ.

Yes, nearly everything you describe screams of celiac disease. Not sure about the body odor as I don't recall others reporting that one. Just one thing to keep in mind. If you go for testing to get an official diagnosis, you must be eating gluten daily for 6-8 weeks before the antibody blood test and at least 2 weeks before an endoscopy/biopsy. But I think you already have your answer.

Your problems with milk may be due to the protein casein rather than lactose intolerance, though both are possible. This is common among celiacs and after your gut is more fully healed you may be able to go back to dairy. Full healing of the gut commonly takes around 2 years.

Edited May 2, 2021 by trents

[Russ H]

Hi Christiana

The symptoms began just before I moved from the UK to Sweden. It took me nearly a year to get residence in Sweden as immigration lost my first application, and during this time I couldn't get healthcare. In fact, I flew back to the UK several times to see my family doctor. Then, when I finally got residence I had a couple of terrible consultations and gave up. One doctor I saw in the UK thought I might have a leaky bowel and recommended I try excluding dairy and wheat. I did this, but did not exclude other sources of gluten.

 

Russ

[Russ H]

  On 5/2/2021 at 1:59 PM, trents said:

Welcome to the forum, Russ.

Yes, nearly everything you describe screams of celiac disease. Not sure about the body odor as I don't recall others reporting that one. Just one thing to keep in mind. If you go for testing to get an official diagnosis, you must be eating gluten daily for 6-8 weeks before the antibody blood test and at least 2 weeks before an endoscopy/biopsy. But I think you already have your answer.

Expand Quote  

Hi trents,

It would be helpful to have an official diagnosis. I don't relish the thought of going back on gluten for 6 weeks, and I think I will postpone that until after summer.

I found a few reports of people developing body odour after eating gluten but it doesn't seem to be that common.

 

Thanks for the information.

[Scott Adams]

Others have reported body odor as a possible symptom, but your other symptom are very common among those with celiac disease and/or gluten sensitivity.

Here is a search of our forum on the body odor symptom:

https://www.celiac.com/search/?q="body odor"&type=forums_topic&updated_after=any&sortby=relevancy&search_and_or=and 

[Russ H]

Thanks for the link. So, some people seem to have it. I read some speculation that it is caused by fermentation products getting into the blood stream and coming out in perspiration.

[Scott Adams]

It would not surprise me at all if the leaky gut condition, which is often part of celiac disease, would cause this symptom.

[Russ H]

Is this the cause of brain-fog? I just read about death cap mushroom poisoning. Death caps contain a toxin that damages the liver. This leads to fermentation products from the gut building up in the blood and causing hepatic encephalopathy. The treatment involves broad spectrum antibiotics for a few days to kill the gut bacteria and reduce toxins until the liver recovers. As I understand, the small intestine does not normally have many bacteria, but in coeliac the gut is damaged and there is overgrowth of bacteria. This is what causes the gas and bloating. Perhaps the toxins from this cause some of the other symptoms?

[trents]

There can be SIBO (Small Intestine Bacterial Overgrowth) associated with celiac disease but it is not a universal condition with celiacs.

[Scott Adams]

If you don't start noticing significant improvement on a gluten-free diet after a few more months, perhaps look at this article:

 

[Russ H]

I had assumed that I had SIBO due to the amount of gas I was producing - I was constantly burping. I am planning to go back on gluten for the blood test in late summer. I am feeling really well at the moment and dreading it. Still a little bloated and burping but improving every day. Reflux has pretty much stopped. The only food that seems to make the bloating and burping worse for me is bananas. I seem to be OK with other fruit and vegetables. For some reason, red wine seems to reduce the burping.

[Scott Adams]

Be sure to also look into a low FODMAP diet, as fructose can trigger symptoms in those who are sensitive:

 As for the red wine, my guess would be that the more dry the wine is, the better it would be if your issues are related to certain types of sugars.

[Posterboy]

  On 5/2/2021 at 12:58 PM, Russ314 said:

8. Body odour. I am very clean but developed a strong body odour that numerous people have commented upon. When I exercise, my clothing stinks of sweaty socks afterwards.

Expand Quote  

Russ,

I had similar problems when I was kid.....some people were very mean about it....others were just trying to help me.

Little did I know there was a "Vitamin for that".......strange as that might sound on first hearing it....it really is true!

I will be quick and short tonight....I have some other things I need to attend too!

Here is nice article from a fellow sufferer about it.

Entitled "Adult Onset TMAU: Intense Fishy Body Odor Syndrome"

https://www.hormonesmatter.com/adult-onset-trimethylaminuria-tmau-intense-fishy-body-odor-syndrome/

Typically it noticed in childhood as a genetic disease but as the above article states it can present later in Adulthood.

The good news taking Riboflavin can help it.

See this research about it.

Entitled "Riboflavin-responsive trimethylaminuria in a patient with homocystinuria on betaine therapy"

https://pubmed.ncbi.nlm.nih.gov/23430919/

And this case of Fishy Body Odor triggered by the use of Antivirals...

Entitled "Antiretroviral treatment leading to secondary trimethylaminuria: Genetic associations and successful management with riboflavin"

https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpt.13315

I seemed to notice it myself when I had an intense workout....so I know they weren't making it up.

At the time I just thought I was a heavy sweater.....so I just cut down on "Team Sports" so as not annoy any of my team mates.....

But later I found even after intense workouts I still could/would smell my "intense smell".....

As I said I later found out I had been low in Riboflavin aka Vitamin B-2.

I had other problems that a B-2 deficiency explained as well that the doctor's couldn't figure out/explain at the time.

Like Geographic Tongue and Horrible Mouth Ulcers etc...

Here is a couple links about it...

https://glutenfreeworks.com/health/tongue-magenta-swollen/

And this one entitled "Recurrent aphthous ulceration: vitamin B1, B2 and B6 status and response to replacement therapy"

https://pubmed.ncbi.nlm.nih.gov/1941656/

Not surprising these conditions got better after taking Riboflavin!

Here is my Posterboy blog that explains my journey of dealing with Vitamin deficiencies being diagnosed as Genetic conditions.....especially in/with GI problems.

Maybe at least one blog post will help you....scan it and see  if at least one doesn't catch your eye....

This will keep me from referencing multiple Posterboy blog posts...

I hope this is helpful but it is not medical advice.

Good luck on your continued journey!

Posterboy,

[Russ H]

Scott,

The bloating and burping seems to be slowly improving. It could well be fructose that is making me worse, as I seem to be fine with beans and other foods mentioned in your link. I got hold of some probiotic foods that I am going to have with every meal to see if that helps correct the dysbiosis.

Posterboy. I think the problem I have is related to gluten. My body odour has gone. It wasn't fishy - more like a combination of sweaty armpits and sweaty socks. It slowly disappeared over several weeks.

Thanks again,

Russ

[Russ H]

Just as a follow up. I must be about 5 months gluten free now. The bloating and burping went away over a period of a couple of days about 3 months after being completely gluten free. Every day I feel a little better and my short term memory problems have gone. Although not completely back to normal, my bowel habits are much better and fatty stools have completely gone. My bad body odour has also remained at bay.

About 2 weeks ago, I was staying in Stockholm and I think I got 'glutened' in an Indian restaurant. Terrible reflux and burping that night, disturbed bowel habits for several days, and a return of body odour for a day or so. I also got the dreaded 'brain fog'. It went after a couple of days but I now always ask about food preparation, and if there is any uncertainty don't eat there. Sweden is by far the worst country I have been in for people with coeliac disease, not to mention it rivals the UK for terrible food. Good: Italy, France, Iceland, Denmark. Will be trying Germany and Switzerland soon.

[Scott Adams]

It sounds like good news! I'm surprised that Sweden isn't better, as Scandinavian countries have the highest rates of celiac disease, and they supposedly have a much higher awareness of it. In any case, you may want to look into GliadinX enzymes, they are a sponsor here, but they have been shown in multiple studies to break down small amounts of gluten in the stomach, before it reaches your intestines. If you travel a lot and eat out it might be good to have them on hand.

[cristiana]

Hi Russ

Thanks for the update.   So glad you have some good news to share.  

 

Less about bad British food please though - my cooking is excellent! 😉  Hahah!

All the very best.

 

[Russ H]

  On 7/12/2021 at 11:24 PM, Scott Adams said:

It sounds like good news! I'm surprised that Sweden isn't better, as Scandinavian countries have the highest rates of celiac disease, and they supposedly have a much higher awareness of it. In any case, you may want to look into GliadinX enzymes, they are a sponsor here, but they have been shown in multiple studies to break down small amounts of gluten in the stomach, before it reaches your intestines. If you travel a lot and eat out it might be good to have them on hand.

Expand Quote  

I have seen those enzymes. Also, it is possible to get gluten test kits - do you think are reliable? Might help to avoid getting glutened.

Sweden surprised me. Gluten-free is a fad diet here - lots of people go gluten-free and vegan because it is fashionable. Hence when you eat out, 'gluten-free' options are often not strictly gluten free. The only success I have had is finding genuine Italian restaurants with Italian chefs - they will go to great lengths to help you out.

Christiana, I am sure your home cooked food is delicious but eating out is hit-and-miss unless you are dining at the Dorchester. A lot of restaurants will charge you 20 quid for dumping a microwave meal on your plate.

[Scott Adams]

I do think home test kits can be reliable, but like anything, read some reviews about the different ones out there?