Bad breath

[Ouchybelly27]

Has anyone experienced bad breath related gluten? I’ve been suffering from bad breath the last two years and can not figure out why. I’ve explored every avenue and I’m beginning to think it is related to gluten. Some of my other symptoms are itchy skin (eczema), excessive hair breakage, sharp cramping pain after consuming anything with gluten, bloating, unexplainable weight gain, and constipation. I went gluten-free for 3 months in the summer and felt great, but then I decided that I want to get tested again and went off of the diet. Any insight would be greatly appreciated. 

[trents]

Do you have a date yet for the testing?

[Ouchybelly27]

  On 11/10/2020 at 5:14 PM, trents said:

Do you have a date yet for the testing?

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Not yet. I am still looking for a primary care doctor. I have seen two GI doctors and both say that my symptoms are not consistent with celiac. 

[Scott Adams]

Although bad breath is not listed in the most common symptoms of celiac disease, many people have reported this here as one of their symptoms. Here is a search of our site for "bad breath":

https://www.celiac.com/search/?q="bad breath"&updated_after=any&sortby=relevancy&search_and_or=and

[HannahZ]

My son was diagnosed with celiac at age 15. He had terrible bad breath for two or three years prior to his diagnosis. It was so noticeable, and he would try to use mouth wash all the time to deal with it. He also carried strong mints with him as well in a mostly unsuccessful effort to mask it. We spoke to his pediatrician and his dentist and nobody had any idea what was causing the bad breath. We should have pushed for a GI consult, but the pediatrician said it had to be dental, and then the dentist said no, it is not. The bad breath cleared totally within maybe two weeks of him starting the gluten-free diet. Unfortunately though, his celiac diagnosis was triggered by a new type 1 diabetes diagnosis. While in the hospital they ran screening tests for commonly associated autoimmune diseases, which is when the celiac antibodies were detected. He also turned out to have two copies of the celiac gene, DQ2, which put him at higher risk for both the t1d and the celiac. My younger son was then screened and he too had celiac antibodies, indicating active celiac disease. I went off gluten to see if the diet would be difficult for my son to follow, then when I re-introduced gluten I could not eat it any more, not even enough to do an adequate gluten challenge. I'm on the gluten-free diet now, ten years later. Of course I have no idea if your bad breath is related to celiac, but our family's experience suggests to me that it could be. It's also possible my son's breath had something to do with the t1d, but this seems less likely, as the symptoms of high blood sugar leading up to the diagnosis only started about a month or two before the t1d diagnosis, and the bad breath was there for several years while he was in middle school. By the way, we have been told the untreated celiac could have played a role in triggering the t1d, and as sad as that is, at least my younger child was able to get on the gluten-free diet and he did not become diabetic. I have a third son who is on the autism spectrum; he is not celiac. But I am sorry in a way that our family did not join the gluten-free diet trend for his autism. None of my kids ever showed obvious stomach issues, so we did not think gluten could be a problem.

I really wish the medical community could find answers for us more quickly, and I think for example if the bad breath was due to the celiac for my middle son, maybe if we had found that answer he might not have gone on to develop the t1d.

Sorry for the long, rambling reply. I hope you find answers.

[Ouchybelly27]

  On 11/18/2020 at 9:37 AM, HannahZ said:

My son was diagnosed with celiac at age 15. He had terrible bad breath for two or three years prior to his diagnosis. It was so noticeable, and he would try to use mouth wash all the time to deal with it. He also carried strong mints with him as well in a mostly unsuccessful effort to mask it. We spoke to his pediatrician and his dentist and nobody had any idea what was causing the bad breath. We should have pushed for a GI consult, but the pediatrician said it had to be dental, and then the dentist said no, it is not. The bad breath cleared totally within maybe two weeks of him starting the gluten-free diet. Unfortunately though, his celiac diagnosis was triggered by a new type 1 diabetes diagnosis. While in the hospital they ran screening tests for commonly associated autoimmune diseases, which is when the celiac antibodies were detected. He also turned out to have two copies of the celiac gene, DQ2, which put him at higher risk for both the t1d and the celiac. My younger son was then screened and he too had celiac antibodies, indicating active celiac disease. I went off gluten to see if the diet would be difficult for my son to follow, then when I re-introduced gluten I could not eat it any more, not even enough to do an adequate gluten challenge. I'm on the gluten-free diet now, ten years later. Of course I have no idea if your bad breath is related to celiac, but our family's experience suggests to me that it could be. It's also possible my son's breath had something to do with the t1d, but this seems less likely, as the symptoms of high blood sugar leading up to the diagnosis only started about a month or two before the t1d diagnosis, and the bad breath was there for several years while he was in middle school. By the way, we have been told the untreated celiac could have played a role in triggering the t1d, and as sad as that is, at least my younger child was able to get on the gluten-free diet and he did not become diabetic. I have a third son who is on the autism spectrum; he is not celiac. But I am sorry in a way that our family did not join the gluten-free diet trend for his autism. None of my kids ever showed obvious stomach issues, so we did not think gluten could be a problem.

I really wish the medical community could find answers for us more quickly, and I think for example if the bad breath was due to the celiac for my middle son, maybe if we had found that answer he might not have gone on to develop the t1d.

Sorry for the long, rambling reply. I hope you find answers.

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Thank you so much for responding! Your sons experience with celiac disease is just horrible. I needed to hear/read that story, thank you. For some reason the medical community does not take celiac seriously even though it’s been linked to cancer and other autoimmune diseases. 
 

I have been suffering with bad breath the last four years and it happened randomly. I just woke up one day and had terrible bad breath and everyone around me can smell it from quite a distance. I have been to the dentist almost everyday the last few years and my dentist assured me that my mouth is extremely healthy. I get dental cleanings every three months and I floss like my life depends on it. I stopped eating meat because for some reason I thought it was the meat causing the odor. I saw three different GI doctors and a naturopathic doctor. I had two endoscopies (3 years apart) and one colonoscopy and the doctors say they were normal. I did receive a letter in the mail months after the colonoscopy where the doctor diagnosed me with proctitis (3 yrs. ago) which is linked to celiac disease. I also had some blood work done to no avail.

I did go on a gluten-free diet three times, but my family is not honest with me about my breath so I do not know if it was cured on the diet. They are trying to protect my feelings but I do not need protection, I need help to figure this out. I am 26 years old and I am not dating, because who wants to date someone with bad breath. 
 

Sorry for the long reply. 

[Ouchybelly27]

  On 11/12/2020 at 5:47 PM, Scott Adams said:

Although bad breath is not listed in the most common symptoms of celiac disease, many people have reported this here as one of their symptoms. Here is a search of our site for "bad breath":

https://www.celiac.com/search/?q="bad breath"&updated_after=any&sortby=relevancy&search_and_or=and

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Thank you, these post have been helpful. 

[HannahZ]

Sorry for not writing back sooner, and I am so glad my post was helpful. ITA people don't understand how serious celiac disease is. That is a big problem, and I'm talking about  doctors as well as family members! I tried to get celiac antibody tested before starting my own gluten-free diet (which I intended to try in order to provide help to my son, and see what kind of a challenge it would be for him). On the basis that I was 20 pounds over weight, I could not get the antibody test. After commencing the gluten-free diet, in my case, I was not able to consume gluten again without severe symptoms. I tried but never managed the amount that was supposed to be needed for a reliable endoscopy. Since then, I've learned at a celiac disease center in NYC, that many of their newly diagnosed patients are overweight or even obese. It's even possible people are over-eating as their bodies try to compensate for nutrient deficiencies. The highly varied presentation of those deficiencies turns out to be yet another issue creating problems for undiagnosed celiac patients - depending on where the damage happens to be, different nutrients can be deficient, leading to totally different symptoms. In my family we have been low on B12, zinc, and cholesterol. During the period of my son's bad breath, his total cholesterol was so low it was flagged abnormal, but then the pediatrician commented, 'we don't worry about that - it is only a problem if it is high.' B12 and zinc have been flagged abnormal, and we are given supplements, but nobody asks 'why?'

I think my son's total cholesterol was 104 when it was flagged low, and mine was always flagged low as well (and this despite me being over weight). Ours returned to normal after we started the gluten-free diet.  My point in mentioning this is, perhaps you could look for any of these other possible signs of celiac, and if you have them, let that strengthen your resolve to try the gluten-free diet carefully and uninterupted for at least six months (see how you are feeling at the end of that time). Also, if you are low in any nutrients, especially B12, it is best to get that treated promptly.

BTW, here's another in a way trivial change I noticed - my hair, which had always been thin and extremely fine, suddenly grew in much thicker. You could time the diet change from the change in appearance of the few strands of hair in my hairbrush - each hair was fine and thin to a point then suddenly changed to having a noticeably larger cross-section. I wish I had known that was the issue when I was younger - all those years I could have had nice, thick, shiny hair (although that is of course the least of it for me and for my family). I only really mention it as another possible sign of untreated celiac. I find there is a lot of info NOT in the mainstream medical books - although, thankfully, when one attends a specialist clinic the info is more comprehensive and accurate, at least some times!

Good luck, and I hope your bad breath situation resolves and you find answers in the process.  If it were me, I would try a six month serious gluten-free trial. It is a hassle, but I think it would be worth it for you to find out if you do better off gluten, and in what ways.

Happy Thanksgiving. I will be preparing gluten-free stuffing and gluten-free pies in our house. Maybe you could try gluten-free after the holidays.

Hannah

[Ouchybelly27]

  On 11/22/2020 at 1:46 PM, HannahZ said:

Sorry for not writing back sooner, and I am so glad my post was helpful. ITA people don't understand how serious celiac disease is. That is a big problem, and I'm talking about  doctors as well as family members! I tried to get celiac antibody tested before starting my own gluten-free diet (which I intended to try in order to provide help to my son, and see what kind of a challenge it would be for him). On the basis that I was 20 pounds over weight, I could not get the antibody test. After commencing the gluten-free diet, in my case, I was not able to consume gluten again without severe symptoms. I tried but never managed the amount that was supposed to be needed for a reliable endoscopy. Since then, I've learned at a celiac disease center in NYC, that many of their newly diagnosed patients are overweight or even obese. It's even possible people are over-eating as their bodies try to compensate for nutrient deficiencies. The highly varied presentation of those deficiencies turns out to be yet another issue creating problems for undiagnosed celiac patients - depending on where the damage happens to be, different nutrients can be deficient, leading to totally different symptoms. In my family we have been low on B12, zinc, and cholesterol. During the period of my son's bad breath, his total cholesterol was so low it was flagged abnormal, but then the pediatrician commented, 'we don't worry about that - it is only a problem if it is high.' B12 and zinc have been flagged abnormal, and we are given supplements, but nobody asks 'why?'

I think my son's total cholesterol was 104 when it was flagged low, and mine was always flagged low as well (and this despite me being over weight). Ours returned to normal after we started the gluten-free diet.  My point in mentioning this is, perhaps you could look for any of these other possible signs of celiac, and if you have them, let that strengthen your resolve to try the gluten-free diet carefully and uninterupted for at least six months (see how you are feeling at the end of that time). Also, if you are low in any nutrients, especially B12, it is best to get that treated promptly.

BTW, here's another in a way trivial change I noticed - my hair, which had always been thin and extremely fine, suddenly grew in much thicker. You could time the diet change from the change in appearance of the few strands of hair in my hairbrush - each hair was fine and thin to a point then suddenly changed to having a noticeably larger cross-section. I wish I had known that was the issue when I was younger - all those years I could have had nice, thick, shiny hair (although that is of course the least of it for me and for my family). I only really mention it as another possible sign of untreated celiac. I find there is a lot of info NOT in the mainstream medical books - although, thankfully, when one attends a specialist clinic the info is more comprehensive and accurate, at least some times!

Good luck, and I hope your bad breath situation resolves and you find answers in the process.  If it were me, I would try a six month serious gluten-free trial. It is a hassle, but I think it would be worth it for you to find out if you do better off gluten, and in what ways.

Happy Thanksgiving. I will be preparing gluten-free stuffing and gluten-free pies in our house. Maybe you could try gluten-free after the holidays.

Hannah

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My hair is so thin and breaks off very easily. Last week I cut it all off . I am vitamin b12, vit D, iron deficient, and anemic. It’s funny because after having blood work done several times you would think the doctors would think why are you always vitamin deficient, obviously that means there’s an issue with absorption. 
 

I tried the gluten-free diet three times and I stopped a month ago, I am going to continue eating gluten for as long as I can stand it and hopefully get tested in Jan. The last time I did the diet it lasted three months and I felt good, but not good enough. I was not bloated ever but still something was off. I think that I was still being glutened by some of the seasonings in my cabinet. After I get tested in January whether it is proven or not if I have celiac disease I will take a laxative to completely empty my bowels and go back on a gluten-free diet and fully commit. 
 

I am overweight as well, maybe by 35lbs. My weight fluctuates, even though in the past I did not have a weight issue. When I was on the diet I lost weight quickly and as soon as I start to consume gluten again the weight is packing on. 
 

Thank you so much for taking the time out to respond to me. This reminds me that I am not suffering alone. 

[trents]

Who are "ITA" people? I'm not familiar with the acronym.

[Posterboy]

  On 11/22/2020 at 1:46 PM, HannahZ said:

ITA people don't understand how serious celiac disease is

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Trents,

I think she means...."I Totally Agree" people don't understand how serious Celiac disease is!

Posterboy,

[Posterboy]

Ouchy Belly,

You could have Low Stomach going undiagnosed......Low stomach acid can be a trigger for Bad breath....

Being low in B-Vitamins can also lead to Bad Breath...

Here is a couple online articles about it.....I use to have the same problem(s)....

https://www.thealternativedaily.com/signs-of-low-stomach-acid/

https://healthfully.com/545758-does-vitamin-b-complex-cause-bad-breath.html

Doing an at home Baking Soda test for Low Stomach Acid can help you confirm this suspicion.

Here is a nice online article about the Baking Soda test to test for Low Stomach Acid...

https://drjockers.com/5-ways-test-stomach-acid-levels/

Read down to the bottom of the article.....or just drop/skip down to the bottom and it will explain it in detail for you.

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

Posterboy,

[HannahZ]

  On 11/23/2020 at 4:49 AM, trents said:

Who are "ITA" people? I'm not familiar with the acronym.

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Sorry, I left out a comma. It was ITA, people ... as in 'I totally agree, people do that' etc.

  On 11/23/2020 at 10:46 PM, Posterboy said:

Trents,

I think she means...."I Totally Agree" people don't understand how serious Celiac disease is!

Posterboy,

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yes, thanks for explaining that, and sorry I took so long to respond myself

[trents]

Thanks. I'm not as up on the proliferation of digital communication shortcuts in the last couple of decades as I should be.