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JodiC

Lung Nodules/deposits And Celiac

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Hi everyone, I was hoping maybe someone on this site has been diagnosed with lung deposits and has Sjogrens. My doctor thinks that these deposits may be related to celiac in some way. In Sept went and saw doctor for some routine follow-up CT scans and pullmonary function tests. Figured all would be fine until the results came back showing multiple nodules in both lower lungs that were either lymph nodes or cancer. Had an abd/pelvis ct w/contrast to rule out enlarged lymph nodes in those areas and relook at the bottom of the lungs. This was done 2 weeks later following a course of antibiotics ( which she just wanted to see if they would work for the persistant cough I have had... it didn't). Anyway the CT results came back unremarkable for both the pelvis, abd, and lymph nodes.. however there was some atelectasis of both lungs now seen. ( This is partial collapse of the lower lobes). I'm assuming this is not serious since my doctor didn't even mention it, only the radiologist did??? Through all of this my lungs have been the only part of my body that wasn't affected and now even they aren't working properly. I as diagnosed with sjogren's though I don't know if it is primary or secondary. With regards to the deposits in the lungs they want to do a wait and see approach to see if they continue to enlarge. They are currently 3 mm and need to be at leat 5mm for biopsy. (it took only 9 months for them to develop as of Dec 5th, 2005 ct was completely negative for anything and by Dec 16 I was diagnosed with Intersestial lung disease and some bronchial wall thickening. (At the mayo clinic). Back home the Rad says there is no evidence of intersestial lung disease or thickening only the deposits. I don't know if Mayo was wrong or just missed them????) I have some chest pain due to this along with edema that is qute marked. Doctor wants me to do a 5 day trial of Prednesone but the thought of steroids scared me. Has anyone had to use them? I guess what is bothering me the most is the wait and see. I can't get it out of my mind what could possibly be going on while waiting. I know with Celiac and other Auto-immune diseases that our chances of cancer are increased. So of anyone out there had experienced anything like this you input would be ery much appreciated. I am a mother of 3 and have to think of them. I just feel so lost.

Thank you

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Hi everyone, I was hoping maybe someone on this site has been diagnosed with lung deposits and has Sjogrens. My doctor thinks that these deposits may be related to celiac in some way. In Sept went and saw doctor for some routine follow-up CT scans and pullmonary function tests. Figured all would be fine until the results came back showing multiple nodules in both lower lungs that were either lymph nodes or cancer. Had an abd/pelvis ct w/contrast to rule out enlarged lymph nodes in those areas and relook at the bottom of the lungs. This was done 2 weeks later following a course of antibiotics ( which she just wanted to see if they would work for the persistant cough I have had... it didn't). Anyway the CT results came back unremarkable for both the pelvis, abd, and lymph nodes.. however there was some atelectasis of both lungs now seen. ( This is partial collapse of the lower lobes). I'm assuming this is not serious since my doctor didn't even mention it, only the radiologist did??? Through all of this my lungs have been the only part of my body that wasn't affected and now even they aren't working properly. I as diagnosed with sjogren's though I don't know if it is primary or secondary. With regards to the deposits in the lungs they want to do a wait and see approach to see if they continue to enlarge. They are currently 3 mm and need to be at leat 5mm for biopsy. (it took only 9 months for them to develop as of Dec 5th, 2005 ct was completely negative for anything and by Dec 16 I was diagnosed with Intersestial lung disease and some bronchial wall thickening. (At the mayo clinic). Back home the Rad says there is no evidence of intersestial lung disease or thickening only the deposits. I don't know if Mayo was wrong or just missed them????) I have some chest pain due to this along with edema that is qute marked. Doctor wants me to do a 5 day trial of Prednesone but the thought of steroids scared me. Has anyone had to use them? I guess what is bothering me the most is the wait and see. I can't get it out of my mind what could possibly be going on while waiting. I know with Celiac and other Auto-immune diseases that our chances of cancer are increased. So of anyone out there had experienced anything like this you input would be ery much appreciated. I am a mother of 3 and have to think of them. I just feel so lost.

Thank you

I have not been diagnosed with celiac disease, although I am suspicious. My daughter had a positive Enterolab test. Anyway, I have begun seeing a pulmonologist for asthma, and because pulmonary fibrosis runs in my family. I had a pulmonary function test which came out good, but I also had an x-ray which showed a granuloma in my right lung. I don't know much more than that at this point--I go back for another xray in 2 months to be sure it hasn't grown. Like I said, this is all new to me, and I am not diagnosed (although I have some slightly weird bowel issues and some definite skin reactions, based on a gluten challenge I did myself), so I'm definitely no expert. I'll be interested to hear what you find out, and I'll be sure to share my results once I follow up with the xray and once I get testing for myself through Enterolab (hopefully in the next few months).

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Hi Jodi,

I am going in hopefully this week for an MRI of the liver and have a nodule there. I am also being tested for Sjorgren's. From what I have read, these conditions can be associated with Celiac Disease. Good luck and hang in there.

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Dear JodiC:

My father has celiac desase and recently he has developed caughing problem and breath shortage. He was told last monday that the nodule looking things in his left lung are not real nodules and that they are probably related with his celiac desiase. He was forwarded to a lung specialist by a general surgent who said that.

I recognized you wrote this note in October 2006. I am wondering what the doctors decided after they checked

what happened to your nodules and how your condition is now. It would be mostly appreciated if you can share your experiences and any suggestions with me.

Many thanks in advance,

dkahrama

Hi everyone, I was hoping maybe someone on this site has been diagnosed with lung deposits and has Sjogrens. My doctor thinks that these deposits may be related to celiac in some way. In Sept went and saw doctor for some routine follow-up CT scans and pullmonary function tests. Figured all would be fine until the results came back showing multiple nodules in both lower lungs that were either lymph nodes or cancer. Had an abd/pelvis ct w/contrast to rule out enlarged lymph nodes in those areas and relook at the bottom of the lungs. This was done 2 weeks later following a course of antibiotics ( which she just wanted to see if they would work for the persistant cough I have had... it didn't). Anyway the CT results came back unremarkable for both the pelvis, abd, and lymph nodes.. however there was some atelectasis of both lungs now seen. ( This is partial collapse of the lower lobes). I'm assuming this is not serious since my doctor didn't even mention it, only the radiologist did??? Through all of this my lungs have been the only part of my body that wasn't affected and now even they aren't working properly. I as diagnosed with sjogren's though I don't know if it is primary or secondary. With regards to the deposits in the lungs they want to do a wait and see approach to see if they continue to enlarge. They are currently 3 mm and need to be at leat 5mm for biopsy. (it took only 9 months for them to develop as of Dec 5th, 2005 ct was completely negative for anything and by Dec 16 I was diagnosed with Intersestial lung disease and some bronchial wall thickening. (At the mayo clinic). Back home the Rad says there is no evidence of intersestial lung disease or thickening only the deposits. I don't know if Mayo was wrong or just missed them????) I have some chest pain due to this along with edema that is qute marked. Doctor wants me to do a 5 day trial of Prednesone but the thought of steroids scared me. Has anyone had to use them? I guess what is bothering me the most is the wait and see. I can't get it out of my mind what could possibly be going on while waiting. I know with Celiac and other Auto-immune diseases that our chances of cancer are increased. So of anyone out there had experienced anything like this you input would be ery much appreciated. I am a mother of 3 and have to think of them. I just feel so lost.

Thank you

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Hi everyone, I was hoping maybe someone on this site has been diagnosed with lung deposits and has Sjogrens. My doctor thinks that these deposits may be related to celiac in some way. In Sept went and saw doctor for some routine follow-up CT scans and pullmonary function tests. Figured all would be fine until the results came back showing multiple nodules in both lower lungs that were either lymph nodes or cancer. Had an abd/pelvis ct w/contrast to rule out enlarged lymph nodes in those areas and relook at the bottom of the lungs. This was done 2 weeks later following a course of antibiotics ( which she just wanted to see if they would work for the persistant cough I have had... it didn't). Anyway the CT results came back unremarkable for both the pelvis, abd, and lymph nodes.. however there was some atelectasis of both lungs now seen. ( This is partial collapse of the lower lobes). I'm assuming this is not serious since my doctor didn't even mention it, only the radiologist did??? Through all of this my lungs have been the only part of my body that wasn't affected and now even they aren't working properly. I as diagnosed with sjogren's though I don't know if it is primary or secondary. With regards to the deposits in the lungs they want to do a wait and see approach to see if they continue to enlarge. They are currently 3 mm and need to be at leat 5mm for biopsy. (it took only 9 months for them to develop as of Dec 5th, 2005 ct was completely negative for anything and by Dec 16 I was diagnosed with Intersestial lung disease and some bronchial wall thickening. (At the mayo clinic). Back home the Rad says there is no evidence of intersestial lung disease or thickening only the deposits. I don't know if Mayo was wrong or just missed them????) I have some chest pain due to this along with edema that is qute marked. Doctor wants me to do a 5 day trial of Prednesone but the thought of steroids scared me. Has anyone had to use them? I guess what is bothering me the most is the wait and see. I can't get it out of my mind what could possibly be going on while waiting. I know with Celiac and other Auto-immune diseases that our chances of cancer are increased. So of anyone out there had experienced anything like this you input would be ery much appreciated. I am a mother of 3 and have to think of them. I just feel so lost.

Thank you

Jodi......I have Sjogren's myself and know that lung problems can be associated with this disorder. I am fortunate that I have no known lung problems but Sjogren's will dry tissue out and can affect many different organs in the body, not just the mouth and eyes. It sounds like this is all related to Sjogren's.

Prednisone is not pleasant but can be a lifesaver if needed. Doctors tend to over-prescribe it but only you can decide if your quality of life is compromised to the extent that you'd be willing to take it. All it does, though, is reduce inflammation...it won't make the nodules go away. It's good for edema and lung problems but it does affect bone density in a big way so I would insist on a bone density scan before you start to take it to see what shape your bones are in beforehand.

The only other words I can offer are that cancer is not something that happens commonly with Celiacs....it's an increased risk but not a foregone conclusion.

Our society worries way too much about cancer and doing that will not help anyone. Unless you have in the past or do smoke now, you are probably no more inclined to get cancer than anyone else in the general population....really. You want to keep an eye on things but if they feel there is no cancer there, go with that, try to remain positive, and do the best you can to remain healthy. I know it's frustrating to get differing diagnoses and many here go through that routinely

but it's common with autoimmune problems. They are really hard to figure out sometimes.

Best of luck to you and I hope things work out well...take care!

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