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

Coastie17

Recommended Posts

Coastie17 Newbie

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

have you had his vitamin levels checked lately?

Coastie17 Newbie

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

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

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

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

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

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

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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,439
    • Most Online (within 30 mins)
      7,748

    Lillian Steele
    Newest Member
    Lillian Steele
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.