Celiac & Croup
Posted 23 August 2006 - 06:01 AM
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.
Posted 23 August 2006 - 06:09 AM
If only doctors knew how many ailments can be improved by the diet. I hope the NIH clues them in soon...
p.s. I'm so sorry to hear of your lost babies. You've been through such a lot.
She made some tarts
All on a summer's day.
The Knave of Hearts,
He stole the tarts
And took them clean away.
Diagnosed at age 49 by biopsy 31 May 2006
Learning how to bake those tarts gluten-free!
Posted 23 August 2006 - 06:12 AM
Posted 23 August 2006 - 06:19 AM
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?
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! :-)
Posted 23 August 2006 - 06:37 AM
Posted 23 August 2006 - 11:19 AM
Posted 23 August 2006 - 11:50 AM
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!
Posted 13 June 2013 - 12:18 PM
I know this is an old post but I am putting this here anyway. Thank you for sharing. I can relate.
Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013
Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013
Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014
I have a long list of physical ailments that were being grouped into age/gender by doctors.
Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.
Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.Albert Einstein
Posted 17 June 2013 - 10:34 AM
Wow, thank you for bumping this 'survivormom'- I noticed that my daughter would get a cough after being glutoned...I thought I was nuts....
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