Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lung Nodules/deposits And Celiac

JodiC

By JodiC
in Related Issues & Disorders

Recommended Posts

JodiC Apprentice
JodiC
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


chewymom Rookie
chewymom
Posted
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).

Anne AMP Apprentice
Anne AMP
Posted

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.

  • 2 years later...
dkahrama Newbie
dkahrama
Posted

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

Gemini Experienced
Gemini
Posted
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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748
    Sonya Haskin
    Newest Member
    Sonya Haskin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.