• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites
Guest nini

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,915
    • Total Posts
      943,485
  • Member Statistics

    • Total Members
      67,085
    • Most Online
      3,093

    Newest Member
    Pamelas
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thanks so much for the tips! I told my mom them and she thought they were pretty clever. And I never realized how lucky I was to have medical help. I’ll be much more careful with personal information. I was going to delete the post in case it had too much info but i can’t unless you delete your reply. It’s ok though. Thank you!
    • I didn't mean my world fell apart because of celiac but because of something else. Finding out about celiac disease actually gave me hope.
    • @PosterboyOne thing is though I never get heartburn. And this only happens when I've consumed something for consecutive days, like I had the bananas and too many nuts. But if PH has something to do with it then maybe when I'm eating more vegetables and broth that's why I usually feel much better, it's more alkaline. On a ph urine test whenever I'm feeling like this I ALWAYS have a reading towards the acidic part. When I feel better it always goes towards the alkaline level and usually in the ideal level. Part of it started when I was under high stress in the first place. A few years ago. I couldn't eat as much/well because I was very worried about things. The realization about celiac came later but basically my world fell apart and I've fought but never felt really okay again. Then at the worst before I knew about celiac disease I was vomitting for days. Now I can eat many more foods but it's still very touchy if I don't strictly eat vegetables, broth, lots of water and small amounts of fats and protein. I'm scared to take anything artificial. I've only recently been able to take very small amounts of probiotics. Is there no way to repair your stomach acid without taking pills? Would going on a strict alkaline diet help?  I read everything you wrote except the link which I don't know if I can concentrate right now. Thank you.
    • I have seen this a few times....run a gluten free bakery....one of my previous customers has the disease, but he gawks at my prices and then goes eats from other stores and consumes gluten products.....I tried offering freebies left over items to get him to switch....been watching him degrade over the past 3 years. He now walks...odd like Frankenstein with locked knees and a wobble and seems be much less active not appearing at this job few days a month now....I do worry about these people. Celiac effects everyone different some violently, others do not see the damage or have grown so use to the issues that they consider them normal. It is a sad thing to see. I have seen improvement in my own body following a strict diet and regime and see major consequences when I trip ......I can not imagine anyone cheating but my reactions are bad with many side effects. Celiac being a AI disease can cause other secondary complications I am all to aware of if  you cheat, mess up.
    • I don't know, it's probably best described as a lot of bile, sometimes yellow, sometimes green (sorry) and a lot of mucus (sorry_) and when I eventually throw it up  (if it gets to that point) it's burning in my throat, so I equate it with acid. Also because of the term "antacid" I think of it as a lot of acid but I guess it's a lot of bile, mucus and I thought the extra stomach acid produced dealing with whatever food I ate. I've done the wrong thing though because now I'm in the pain I was dreading, with swollen eyes and everything and really bad depression now and hopelessness. I keep feeling like it's all futile and too late. That however hard I try I can't figure everything out in time to be well.
  • Upcoming Events