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
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    2. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    4. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    5. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,299
    • Most Online (within 30 mins)
      7,748
    Philbin
    Newest Member
    Philbin
    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

    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • 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.