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. Scott Adams
      - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will...
    2. Jacki Espo
      - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure.
    3. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

      Hi Tiffany. Thank you for writing your dituation and circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines. Way back when I was in my 2...
    4. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...
    5. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      Fascinating.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748
    jenny44
    Newest Member
    jenny44
    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

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.