Celiac and body odour

[Isabella19]

Son, undiagnosed.  Several years of a specific “odour” in his room. Not a body odour as in sweat, just an off smell that we could not get rid of . Bedding, room in general and him some what, even after a shower .

clean room, bedding etc , air freshener.. no help. 
past 6 months he sensed that gluten may be an issue . Now eats mainly gluten-free , and what do you know … the odd smell in the bedroom has randomly disappeared!!  Very odd , NOTHING ELSE has changed ! Room still clean, weekly by cleaners, bedding , no dirty laundry Etc , only the stoppage of gluten foods . 
Has anyone heard of such, that the scent of a celiac may have a distinct smell ?  
he will get tested, however, now that he has cut out gluten I am thinking the blood work maybe inacurate?

[trents]

@Isabella19, welcome to the forum!

Yes, the fact that your son has already cut way back on his gluten will likely sabotage any testing for celiac disease. However, since he has no other apparent symptoms, or at least you didn't mention them, a gluten challenge to prepare for the blood antibody testing is a reasonable option. Guidelines for a pretest gluten challenge are kind of in flux as there is a feeling they were formerly too relaxed. Most recent advice is the daily consumption of 10gm of gluten or more for at least two weeks. So, I would think 3 slices of wheat bread daily (or the gluten equivalent) for four weeks would ensure valid testing. The change in the body odor problem after withdrawing gluten strongly suggests he has some kind of issue with gluten. Maybe celiac disease. Maybe NCGS (Non Celiac Gluten Sensitivity). To answer your question, I have not heard of the body odor symptoms in connection with gluten disorders but the list of symptoms connected with celiac disease/NCGS has grown dramatically in the last 20 years or so.

Edited December 2, 2023 by trents

[Russ H]

I was plagued with body odour since childhood and it disappeared when I began following a strict gluten free diet. It returned when I went back on gluten for testing. I had to change my clothes several times a day and used to scrub myself so much in the shower that I developed dry skin and eczema. I have read several people reporting strong body odour with coeliac disease although it seems to be a less common symptom.

[Isabella19]

11 hours ago, trents said:

@Isabella19, welcome to the forum!

Yes, the fact that your son has already cut way back on his gluten will likely sabotage any testing for celiac disease. However, since he has no other apparent symptoms, or at least you didn't mention them, a gluten challenge to prepare for the blood antibody testing is a reasonable option. Guidelines for a pretest gluten challenge are kind of in flux as there is a feeling they were formerly too relaxed. Most recent advice is the daily consumption of 10gm of gluten or more for at least two weeks. So, I would think 3 slices of wheat bread daily (or the gluten equivalent) for four weeks would ensure valid testing. The change in the body odor problem after withdrawing gluten strongly suggests he has some kind of issue with gluten. Maybe celiac disease. Maybe NCGS (Non Celiac Gluten Sensitivity). To answer your question, I have not heard of the body odor symptoms in connection with gluten disorders but the list of symptoms connected with celiac disease/NCGS has grown dramatically in the last 20 years or so.

Yes, I failed to mention he was having symptoms of gluten .  he was having symptoms that is why he decided to cut it out and see if it helped any. That is when I noticed the smell disappeared and his other symptoms .

3 hours ago, Russ H said:

I was plagued with body odour since childhood and it disappeared when I began following a strict gluten free diet. It returned when I went back on gluten for testing. I had to change my clothes several times a day and used to scrub myself so much in the shower that I developed dry skin and eczema. I have read several people reporting strong body odour with coeliac disease although it seems to be a less common symptom.

Thank you, very interesting!  I will make sure it’s mentioned to the dr. 
he will need to reintroduce gluten before his testing, so I am cur to see if the “smell” returns with the gluten .

[trents]

What are your son's other symptoms? Did they also improve when he cut back on gluten? If so, you may already have a partial answer as improvement in symptoms would strongly indicate he has either celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no testing available for the latter but it shares many of the same symptoms with celiac disease and also calls for a strict gluten free diet. Be aware that once gluten is withdrawn for a significant period of time that symptoms can be more intense if gluten is reintroduced. If they are intense it may not be worth trying a gluten challenge for testing and it may be safer to just assume he has celiac disease.

[Isabella19]

3 hours ago, trents said:

What are your son's other symptoms? Did they also improve when he cut back on gluten? If so, you may already have a partial answer as improvement in symptoms would strongly indicate he has either celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no testing available for the latter but it shares many of the same symptoms with celiac disease and also calls for a strict gluten free diet. Be aware that once gluten is withdrawn for a significant period of time that symptoms can be more intense if gluten is reintroduced. If they are intense it may not be worth trying a gluten challenge for testing and it may be safer to just assume he has celiac disease.

He noticed that every time he had pasta he would be up all night with diarrhea and stomach cramps, gassy.

pizza same thing .  He seems to think it’s not “as bad” when he has a little bit .

 

however, he also has anaphylaxis to peanuts and nuts.  Was allergic to barley as a child , has not tested for that in recent years, had forgotten about it till  these recent symptoms with gluten. 
and he should know better than anyone that even “ a little” amount is doing damage and is causing problems in the long run. 

[trents]

The three gluten containing grains are wheat, barley and rye. Celiac disease is not an allergy to gluten. It is an autoimmune reaction that is triggered by the ingestion of gluten and utilizes an entirely different immune system pathway than do allergies. However, it is certainly possible to also have an allergy to wheat, barely or rye along with celiac disease. The immune system pathway of NCGS is not as clearly understood and we have a better understanding of celiac disease than we do NCGS.

The autoimmune reaction to gluten causes inflammation in the small bowel that, over time, damages the villous lining of the small bowel. This is the portion of the digestive track where essentially all of the nutrition from what we eat is absorbed. Long term undiagnosed celiac disease (or when diagnosed but a gluten free diet is not practiced) typically results in nutritional deficiencies since the damage to the villous lining reduces the efficiency of nutrient absorption. NCGS does not damage the villous lining and does not produce antibodies and therefore there is no testing available for it as of this point in time. Celiac disease must first be ruled out. However, NCGS can result in damage other body systems such as neurons when disregarded such that a gluten free diet is not practiced. At the end of the day, the antidote for both is the same: diligent avoidance of gluten.

So, it seems you have to make a decision about whether or not to go forward with testing and the gluten challenge or to just live with the ambiguity of not being able to distinguish whether or not your son has celiac disease or NCGS.

[knitty kitty]

18 hours ago, Isabella19 said:

Son, undiagnosed.  Several years of a specific “odour” in his room. Not a body odour as in sweat, just an off smell that we could not get rid of . Bedding, room in general and him some what, even after a shower .

clean room, bedding etc , air freshener.. no help. 
past 6 months he sensed that gluten may be an issue . Now eats mainly gluten-free , and what do you know … the odd smell in the bedroom has randomly disappeared!!  Very odd , NOTHING ELSE has changed ! Room still clean, weekly by cleaners, bedding , no dirty laundry Etc , only the stoppage of gluten foods . 
Has anyone heard of such, that the scent of a celiac may have a distinct smell ?  
he will get tested, however, now that he has cut out gluten I am thinking the blood work maybe inacurate?

The bacteria and fungi in our digestive tract can change depending on what we eat.  

By excluding gluten from his diet, your son has changed his microbiome and his body odor has changed.  

Undigested carbohydrates like gluten are digested by bacteria in our digestive tract.  Some bacteria and yeasts produce gases as a byproduct of this breakdown of carbohydrates that can give us a certain odor.  

Encourage your son to get formally tested for Celiac Disease by gluten challenge or at least by genetic testing.  Celiac Disease is hereditary and first degree relatives (parents, siblings) should be tested, too.  Yes, even a little bit of gluten will perpetuate inflammation and damage.  A definitive diagnosis will help him stick to a gluten free diet.  

Here's information on the gluten challenge...

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

Keep us posted on your progress!

P. S. Interesting Reading:

Microbiota and Malodor—Etiology and Management

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7215946/

And...

The Auto-Brewery Syndrome: A Perfect Metabolic “Storm” with Clinical and Forensic Implications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8537665/

Edited December 2, 2023 by knitty kitty
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[Isabella19]

43 minutes ago, knitty kitty said:

The bacteria and fungi in our digestive tract can change depending on what we eat.  

By excluding gluten from his diet, your son has changed his microbiome and his body odor has changed.  

Undigested carbohydrates like gluten are digested by bacteria in our digestive tract.  Some bacteria and yeasts produce gases as a byproduct of this breakdown of carbohydrates that can give us a certain odor.  

Encourage your son to get formally tested for Celiac Disease by gluten challenge or at least by genetic testing.  Celiac Disease is hereditary and first degree relatives (parents, siblings) should be tested, too.  Yes, even a little bit of gluten will perpetuate inflammation and damage.  A definitive diagnosis will help him stick to a gluten free diet.  

Here's information on the gluten challenge...

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

Keep us posted on your progress!

P. S. Interesting Reading:

Microbiota and Malodor—Etiology and Management

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7215946/

And...

The Auto-Brewery Syndrome: A Perfect Metabolic “Storm” with Clinical and Forensic Implications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8537665/

Thank you so much, you have provided us with great information! I will be sure to read it all ! Very much appreciated 

I will definitely post again once we have a diagnosis.  As I am sure the gluten has to do with the “odour”  (not a sweaty, perspiration odour)