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

Helppppp

Coastie17

Recommended Posts

Coastie17 Newbie
Coastie17
Posted

Desperately seeking advice- our son was finally diagnosed after five long years (more actually but five of my desperately seeking answers). Every MD kept saying "well, no need to test for celiac since he is not emaciated and he is growing on target ". Finally going to see a specialist and getting the answers we were desp seeking felt good- I took him off gluten a year ago- just out of desperation and it was a miracle. Now though he has terrible mouth ulcers- could there be hidden gluten somewhere?? Any ideas?? Also he has a chronic cough!! Off and on for over five years as well- so bad that it causes him to miss lots of school- his lungs are good (has history of asthma but it's well controlled) - the MD thinks it's not related to the celiac but gas no clue what's causing it-- anyone have anything like this w your child?? The cough is affecting his education, sports, etccc- desperately seeking answers :(

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

have you had his vitamin levels checked lately?

Coastie17 Newbie
Coastie17
Posted
  • Author

No we have not- anything specific I should ask for?? We have been seeing an allergy specialist but I am really thinking about looking into a more focused specialist?? Do they have ones specifically for Celiac??

notme Experienced
notme
Posted

a gastro doc would be able to help you better if you think your son has celiac.  my doc tests my vitamin levels at every visit (every 6 months) i never got any mouth sores, but i had dh <crazy itchy skin rash) and celiac presents itself at any opportunity, unfortunately.  i used to have asthma, but it has settled down and my lungs are clear.  only have to use my inhaler if i am sick <which is so much more infrequent since i've been gluten free.  almost never, in fact, and i've not had to take ANY antibiotics in 4 years.  big change from having pneumonia once or twice a year.  

 

on an unrelated side note, my daughter used to get mouth sores from eating too many tomatoes or orange juice, etc, from the acid i guess?  she has to limit these things.  she doesn't have celiac.   

 

it's so hard when our kids are sick  :(  i hope you find some answers.

Coastie17 Newbie
Coastie17
Posted
  • Author

I know thanks so much! He has been officially diagnosed w celiac and I am an RN and still feel overwhelmed I just ache for him! The coughing causes his whole body to hurt because it goes on for so long :(. I just can't figure out (back to his mouth lol) where I could be missing the gluten?? If it's in something I just didn't know or what?? Or if he will be super sensitive and maybe it's cross contamination? I am just clueless

notme Experienced
notme
Posted

read through this, it may help you to find where he may be getting gluten unknowingly :)

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

read around this forum, too.  lots of info and maybe you can find someone who has similar issues.  

cyclinglady Grand Master
cyclinglady
Posted

Is the cough related to bronchial tubes (spasms) or lungs? My brothers have asthma and they could never play sports. One chronically clears his throat with a little cough. Sounds like your son's cough is worse.

Are his meds gluten free? Is the house gluten free? Pet food? School?

Allergies to mold in your house? Pets, milk, eggs, nuts? Has he been tested by the allergist? Anything positive?

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

Celiac.com Sponsor (A8-M):


weluvgators Explorer
weluvgators
Posted

One of our kids gets chronic cough with gluten exposure. Last episode was triggered by an orthodontic appliance in her mouth. A few years ago we had issues with her chronic cough when we were still trying to sort out diet and protocols. Sometimes I wonder if the cough is GERD related, or perhaps EE. I just don't understand it! And it is debilitating! I hope you figure out something. We have to keep very strict home and school protocols in place. I am happy to answer questions about our experiences and help brainstorm possible gluten sources if you want.

Coastie17 Newbie
Coastie17
Posted
  • Author

That is actually what I am beginning to wonder?? It iciness and goes and the MDs are clueless but we live at the beach and do not have any really specialists nearby :( serious considering driving somewhere away to get hello :( thanks everyone's all this advice gives me diff resources to investigate!

SMRI Collaborator
SMRI
Posted

What is he taking for his asthma?  Several inhalers can cause the mouth sores if he is not rinsing his mouth well after using them.  The cough could also be related to his asthma and maybe needs a med adjustment.

Coastie17 Newbie
Coastie17
Posted
  • Author

I am a nurse- which is what makes this that much more frustrating!!!!! Lol- his asthma is well controlled- lungs are clear, pulse ox great, and he is only taking Qvar (not Advair or Spiriva or anything) and he brushes his teeth directly after!! The more and more I investigate the more I wonder if it isn't something either in his school or that they are cleaning the school with?!!! He does well on weekends and by Monday they are calling me to get him?!!! His school is very very clean but it was built in the 70s and we live at the beach- the land of moisture??! I just can't help but wonder??!

cap6 Enthusiast
cap6
Posted

Mouth sore were one of my first symptoms before being diagnosed six to eight of them at a time.    I still get them from time to time now but usually they heal over night.  He might be getting some gluten from some place....  In the meantime you might ask the doctor for Miracle Mouth if his sore are over the top bad.  It's a prescription that numbs the mouth.  Might help when he has a really bad out break 

  • 2 weeks later...
Purpletie3 Newbie
Purpletie3
Posted

Stick with it Mom...he's very lucky to have you. I had mouth sores since I can remember...They thought it may be a sensativity to tooth paste so I switched from whitening back to Tom's and it seemed to go away a little. However, I can't remember having one mouth sore since I went gluten-free. I also had scalp itches which went away with gluten-free lifestyle. Switched out all my shampoo's, lotions, soap, cosmetics...lots of reading...sneaky where they put wheat in as a cheap filler.

 

Good luck to you!

frieze Community Regular
frieze
Posted

is he old enough to self advocate at school?

is he sharing lunches?

is he participating in art and crafts?

is the bus to school clean?

is his desk, etc, clean?

indeed, the cough could be from GERD, or allergy, has his histamine level been checked?

w8in4dave Community Regular
w8in4dave
Posted

I also get mouth sores usually on the roof of my mouth. A dentist DX'd me with Lichen Planus it is an auto immune disease. I am not really sure if I actually have it or not he didn't do a swab. But Last year my toe nails came loose and my hair was falling out. When my toe nail fell off my Dr. Sent in in for labs. It was not fungal. I went to a Dermatologist he took one look at my toe and said that looks like Lichen Planus. He thought my hair was Female balding Pfftt! I think it all has to do with Lichen Planus. I think it all has to do with years of not enuf vitamins. My hair still falls out but I think it's starting to come back. There is a mouth wash out called "Miracle Mouth Wash" You have to get a script. for it. OMG it made my mouth feel so much better. But now I don't get the sores as often. I am hoping it is finally leaving my body. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,929
    • Most Online (within 30 mins)
      7,748
    Mike Rowicki
    Newest Member
    Mike Rowicki
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lehum
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By lehum · Posted

      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • 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.