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

Celiac & Croup

Eeyorific

Recommended Posts

Eeyorific Rookie
Eeyorific
Posted

As we are nearing October... I can't help to think of the 2 painful anniversaries that Oct. 31st hold for us. (trying not to go too OT here) 1.. the last of the 3 babies we have lost would be turning 5 yrs old on that day. and 2.. it marks the 2nd anniversary of when my now nearly 4 yr old almost died. As a mother, it was the most painful, hardest day of my life. Please allow me to share....

My little Matthew monkey had problems right from the start, now that we can see clearly all linked back to his celiac disease, but then, we along with the doctors were clueless. At that time I didn't even know what Celiac disease or Gluten was!! (boy, have we come a LONG way in 4 years!!) Like Many of you I'm sure, we went through many many tests, doctors and pure hell for 2 solid years. celiac disease was mentioned early on around 5 months, but GI doc tested, test was neg.. Doc dismissed.... (boy, little did I know then that he was too young for test to be correct) anyway... Matthew's main symptom was diarrhea, he would often have 35-40 a DAY! He was often hospitalized for dehydration. Other frequent problems he would suffer with was constant fever (some times low, some times really high) He's had two ear infections during those 1st 2 years, but with all of the problems my dd had with ear infections, I wasn't too concerned about that. However, his reaction to the Anti-biotic was concerning all in it's own... It ensured a lengthy stay in the hospital... both times! The one that really got us however, was croup!! This boy would get croup to extents I've never seen before. Again, going back to my daugther (now nearly 11) This was a problem for her as an infant along with severe asthma. But she fails in comparison to how it effects my son. Moving along...

Oct 30th for probably the 20th time that year alone, my Matthew woke up barking like a seal, this time was a bit more intense, so we headed to the ER that AM... of course, like croup some times has a way of doing.. he improved enough before getting there, the doc wasn't concerned much, so sent us home.. and again like croup has a way of doing.. at night he got worse.

OCT 31st 4AM, we headed back to ER. (after trying many quick trips outside in brisk air, using shower and nebulizer for steam to open things up, and many other things we have learned along the way to handle croup) This time they too put him on the nebulizer and prescribed some steroids (as done many times before) and again sent us home.

By the time we got home it was aprox. 11AM, he and I both were wiped out. so I gave him his meds and we headed down for a nap. We both woke up at the same time, I was a bit out of it still, his sissy wanted to hold him while I used restroom exc... I came back, my daughter looked like a sheet... she looked at me with tears in her eyes and said... "mom, I never felt Matthew get this hot. Is he ok?" (she was 8, turning 9 at that time)

I rushed over to him... he was on fire!!! The temp was 105.2 I immediately stripped him and headed to the tub (careful not to get the water too cold to send him into shock).. while I was taking his clothes off.. (this is an image that will stay with me forever) I took one look at his chest and knew we were in trouble.. His chest was sunken so far into his back, it looked like he didn't have a front or middle. I wasted no time calling 911 while I had him in the tub. My husband comes home in the middle of all of this... Thank God he was there to be with my daughter... she was freaking, the 911 dispatcher did her best to calm Eme down.. and it did help. Once in the ambulance. I was informed that my son only had moments before his system was likely to shut down. It was too much for me to process at the time. Once at hospital, they gave him epi-nephrin (sp?) along with many other things such as albuteral in the ambulance. He stayed 4 days that time around. and I thank God every day for saving my baby!

We recieved pos IgG levels, right in the middle of all of this, (after turning 2yrs old on Sept 7th) the GI wanted to biopsy, but didn't do proper celiac panel (different GI doc from infancy)

Anyway, this was the last straw for us... we put him gluten-free as much as possible at hospital, but as soon as we were home. he went strictly gluten-free.. (was already CF) Now, nearly 2 years later.. he's still dealing with some other allergies and problem foods along with possible PDD. However, as far as the croup is concerned, he had 2-3 additional (mild) boughts early on after going gluten-free.. but hasn't gotten croup one time within the last year!

I am sharing this story in hopes of saving lil ones and their families from what our family suffered through. celiac disease has a nasty way of stirring up many other "unrelated" issues. This was the case for my little "Matthew Monkey" from birth... and the longer he went untreated... the worst things got for him.. I don't wish to see any child suffer that way!! Thank you for reading.

Kristie

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

Celiac.com Sponsor (A8-M):


queenofhearts Explorer
queenofhearts
Posted

What an ordeal-- I'm so glad Matthew is healthier now. This is making me think again that one of my sons (who had repeated attacks of croup as a child) should be tested... he's 19 now & doesn't want to hear about it...

If only doctors knew how many ailments can be improved by the diet. I hope the NIH clues them in soon...

Leah

p.s. I'm so sorry to hear of your lost babies. You've been through such a lot.

Nic Collaborator
Nic
Posted

It is funny because my son Jacob (dianosed a year ago at 4) always had horrible cases of the croup. We went to the emergency room several times because I could not get his breathing under control. He went gluten free a year ago and during last winter (first winter gluten free) he had no episodes. Interesting, never thought there might be a connection. Just assumed he out grew it. How about yours, any episodes since being gluten free?

Nicole

Eeyorific Rookie
Eeyorific
Posted
  • Author
It is funny because my son Jacob (dianosed a year ago at 4) always had horrible cases of the croup. We went to the emergency room several times because I could not get his breathing under control. He went gluten free a year ago and during last winter (first winter gluten free) he had no episodes. Interesting, never thought there might be a connection. Just assumed he out grew it. How about yours, any episodes since being gluten free?

Nicole

sorry... I thought I mentioned that in my orginal post.. He had 2 or 3 minor cases of croup that year (went gluten-free in hospital) but didn't have one episode last year at all! :-)

Kristie

Guest nini
Guest nini
Posted

wow, you've been through a lot... we had a few episodes of Croup with my daughter when she was an infant, but NOTHING like what you went through. Thank you for sharing your story. This is such an insidious disease in small children, and I wish that more Dr.s would consider Celiac FIRST before other things. It's not like they have to completely disregard any other condition to dx Celiac... anyway... glad he's ok now. How scary that must've been for you.

azmom3 Contributor
azmom3
Posted

My heart goes out to you for your lost babies and for the stress I'm sure all of this has put on you and so glad to hear Matthew is doing better now. It's hard to understand why so much can happen to one person, but it looks like you're trying to make the best of a bad situation and try to help others so they don't go through everything you did. Thank you for sharing your story!

Eeyorific Rookie
Eeyorific
Posted
  • Author

Thank you everyone for your kind words. Yes, we have been through quite a bit, but honestly speaking, my faith carries me through. Also, Matthew's celiac disease is in a way a blessing. You see, both my daughter and I have had life long health problems that we have now been able to trace back to being gluten intolerant, but it took Matthew and his classic celiac symptoms to bring light to our gluten issues. My 3 miscarriages, anemia, endometriosis, chronic constipation are all due to years of overlooked gluten issues. I am thankful that it only took us 10 years to realize this with my daughter, Hopefully, it will spare her the agony of miscarriages exc... her and I both have been gluten-free for 10 months now, and just to name one... are both amazed at just how easy using the bathroom has become.

Before my sons dx.. my husband and I would joke around by saying... we have one that can't go, and one that doesn't know how to stop going... it's ironic that the answer for both of them was a gluten-free diet. It just goes to show how diverse celiac disease/GS can actually be!

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

Celiac.com Sponsor (A8-M):


  • 6 years later...
surviormom Rookie
surviormom
Posted

I know this is an old post but I am putting this here anyway.  Thank you for sharing.  I can relate.

wmramsel Explorer
wmramsel
Posted

Wow, thank you for bumping this 'survivormom'- I noticed that my daughter would get a cough after  being glutoned...I thought I was nuts....

Archived

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

Go to topic listing

  • 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. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    2. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    4. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,875
    • Most Online (within 30 mins)
      7,748
    oscarbolduc
    Newest Member
    oscarbolduc
    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

    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
×
×
  • 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.