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

Newbie With A Question

EBsMom

Recommended Posts

EBsMom Apprentice
EBsMom
Posted

My daughter, aged 9, has reflux. Her symptoms (dry cough, occasional regurgitation and choking) were mild at first (started a few months ago), but really worsened over the last month or so. I tried manipulating her diet, and also tried some natural remedies, to no avail. I finally called our pediatrician about it, and was told to give my daughter Mylanta 4 times a day. That was a complete disaster! Her reflux symptoms were so much worse that she could barely function. On the advice of a friend, I decided to try a gluten-free diet for her, and we started last weekend. To my surprise....it seems to be working. Her cough has decreased in frequency and severity, she's had no choking episodes and her energy level is up. I've been reading everything I can find about celiac disease and gluten intolerance, and realize that many people in my family, and my husband's, have celiac symptoms. I guess my daughter might be the tip of the iceberg, so to speak. Anyway, my question is this: has anyone else had an older child whose primary symptom was gastric reflux? I've read through these forums, and it seems that reflux is usually an adult or a baby issue, or that the reflux is only one of a collection of different GI symptoms. I'm just curious, because my daughter's case seems "atypical." I ordered the Enterolab test today. I'm all set to commit to the gluten-free lifestyle, but feel that I need a little more indication than just my daughter's decreased reflux symptoms to assure me that we're on the right path (not that I'm not thrilled that she's feeling better!) Thanks for any insight you can give me!!

Rho

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

Celiac.com Sponsor (A8-M):


lob6796 Contributor
lob6796
Posted
My daughter, aged 9, has reflux. Her symptoms (dry cough, occasional regurgitation and choking) were mild at first (started a few months ago), but really worsened over the last month or so. I tried manipulating her diet, and also tried some natural remedies, to no avail. I finally called our pediatrician about it, and was told to give my daughter Mylanta 4 times a day. That was a complete disaster! Her reflux symptoms were so much worse that she could barely function. On the advice of a friend, I decided to try a gluten-free diet for her, and we started last weekend. To my surprise....it seems to be working. Her cough has decreased in frequency and severity, she's had no choking episodes and her energy level is up. I've been reading everything I can find about celiac disease and gluten intolerance, and realize that many people in my family, and my husband's, have celiac symptoms. I guess my daughter might be the tip of the iceberg, so to speak. Anyway, my question is this: has anyone else had an older child whose primary symptom was gastric reflux? I've read through these forums, and it seems that reflux is usually an adult or a baby issue, or that the reflux is only one of a collection of different GI symptoms. I'm just curious, because my daughter's case seems "atypical." I ordered the Enterolab test today. I'm all set to commit to the gluten-free lifestyle, but feel that I need a little more indication than just my daughter's decreased reflux symptoms to assure me that we're on the right path (not that I'm not thrilled that she's feeling better!) Thanks for any insight you can give me!!

Rho

My daughter began life with severe reflux, and a moderately delayed digestive system. She was put on medication for both, found allergic to milk and soy as well. Around 1.5 years, she seemed to be getting better. Fast track to 2 years and she began throwing up all of the time again. She was doing the signature coughing and clearing her throat alot, and her doctor put her back on her reflux meds. Those actually seemed to make things worse (I now wonder if they had gluten). He ran every test under the sun including one for Celiac. They were all negative except her liver/bile test were slightly elevated. We were both at a loss. My daughter was drinking an enormous amount of rice milk at the time, so her pedi suggested I cut back on it. I decided to cut the cereal out of her bottles first, then decrease the actual number of bottles. Wouldn't you know that 3 days or so off the cereal and the vomiting stopped. Her digestive system is still delayed (she would throw up her breakfast at 9pm), and a million other small "signs" have me convinced that her blood tests were a false negative.

I will just say that she needs to be consuming gluten in order for blood tests or biopsies to come back accurately. So if you want it documented in her medical file, she will have to go back on gluten for at least a month and then have a blood draw and perhaps a biopsy as well. Good luck

buffettbride Enthusiast
buffettbride
Posted

Hi there---I think we have the same daughter. :D My kiddo's symptoms started with acid-reflux type things...burping fits but she too had always had a dry cough, sinus troubles, and sore throats. We went to the ped. about 2 years ago and were told to take Zantac. Didn't help much, if at all. Finally went to see the peds. at Children's Hospital as the reflux was getting worse along with burping fits and now inexplicable tummy aches. We tried Prevacid for two months along with the diagnostic tests of a barium swallow, endoscopy, and blood tests. She was confirmed celiac last week based on the biopsy and blood tests. We discontinued the Prevacid this week and she's been essentially gluten free for a week now and completely gluten free since Wednesday of this week. She's feeling TONS better (although I think she'd like me to stop talking about wheat and reading lables but she doesn't complain about the M&M snack pack I sneak into her lunch when Daddy isn't looking).

You can't imagine how awful I felt when we thought we were treating acid reflux and I kept packing chicken noodle soup and saltines in her lunch. YIKES! God bless the invention of the Thermos, so this week it has been gluten-free chicken and rice with gluten-free popcorn. MUUUUCH better!

Good luck with your daughter's diagnoses!

EBsMom Apprentice
EBsMom
Posted
  • Author
She's feeling TONS better (although I think she'd like me to stop talking about wheat and reading lables but she doesn't complain about the M&M snack pack I sneak into her lunch when Daddy isn't looking).

LOL! I think my obsessive label reading, internet research and gluten-free talk has everyone around me wishing I'd stop. I keep assuring them that I'll taper off when I've got a bit of a handle on all this. It's a steep learning curve at first. I'm glad your daughter is feeling better. Mine is too, so far.

Rho

happygirl Collaborator
happygirl
Posted
It's a steep learning curve at first.

That is definitely the truth! But, the good thing is, it DOES get better. Luckily there are great people on this board ready to answer any and all questions :)

Hopefully this list will help some, too. (from Open Original Shared Link

This is the list of companies/brands that I understand will clearly label all sources of gluten in their products:

Arrowhead Mills, Aunt Nelly's, Balance, Baskin Robbins, Ben & Jerry, Bertoli, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, ConAgra, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hellman's, Hershey, Hormel, Hungry Jack, Jiffy, Knorr, Kozy Shack, Kraft, Lawry's, Libby's, Lipton, Martha White, Maxwell House, McCormick, Nabisco, Nestle, Old El Paso, Ortega, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Seneca Foods, Skippy, Smucker, Stokely's, Sunny Delight, T Marzetti, Tyson, Unilever, Wishbone, Yoplait, Zatarain's.

Jodele Apprentice
Jodele
Posted

Hi Rho

I also have a dd that is 9. Her symptoms were the same except she had it from birth. Very bad reflux and hard time breathing. The docs said it was from the irritation of the esophagus from reflux. She had bad sinus problems. I took her to a gi doc when she was 2 and did some testing. But they never contact me with the results. And as a new mom I thought they came back ok. Fast forward five years. My dd got worse when she was 7, so went off to the same gi doc and found out she had a positive response on one of her old test when she was 2. gi doc did more tests and biopsy, test came back very positive but biopsy came back normal. I don

buffettbride Enthusiast
buffettbride
Posted
LOL! I think my obsessive label reading, internet research and gluten-free talk has everyone around me wishing I'd stop. I keep assuring them that I'll taper off when I've got a bit of a handle on all this. It's a steep learning curve at first. I'm glad your daughter is feeling better. Mine is too, so far.

Rho

It's been all gluten-free talk all the time for me, that's for sure. Yay for 'lil girls feeling better! I finally got the "Ya know mom, gluten-free isn't so bad" response from her tonight. The tummy feeling better is sure paying off!

On another note, I talked to my daughter's camp director (girl scout camp) today. It's going to be tricky, that's for sure. I stopped short of asking her to read me the ketchup label--those industrial-sized packages I'm sure are just a glutening waiting to happen. I'm just going to send my own. Some battles are better won with a big cooler full of condiments from home. Maybe I can grab some ketchup packets from McDonalds before she leaves...

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

Celiac.com Sponsor (A8-M):


EBsMom Apprentice
EBsMom
Posted
  • Author
We all went gluten free here and we feel much better now. I went to entrolabs for myself and was sensitive to gluten.

I wish we could all go gluten-free, but my husband is not willing to try it. I'm slowly making my kitchen as gluten-free as possible. I've decided that I'll put any gluteny items in the breadbox, out of sight. I'm trying to make this transition as easy as possible for my daughter. She's been very emotional and a bit weepy this past week. At first I thought she was just stressed by the changes, but now I think it's part of her physical gluten withdrawal. I started eating gluten-free yesterday - partly to show some solidarity with my daughter, but also because I have lifelong vague GI symptoms that I suspect might resolve without gluten in my system. My son is eating "gluten light", as a natural extension of his sister's gluten-free/cf diet. (And his energy level is way up....I'll need to investigate that at some point, but after I get his sister's problem squared away.) So we're a "mostly gluten free" family, I guess. I'm still amazed (it's only been 2 weeks) that the elimination of gluten can have such a big effect! I'll never look at a loaf of bread (gluten-filled) the same way again (meaning, without imagining the symbol for "poison" emblazoned on the wrapper!!!!!!!)

Rho

EBsMom Apprentice
EBsMom
Posted
  • Author
On another note, I talked to my daughter's camp director (girl scout camp) today. It's going to be tricky, that's for sure. I stopped short of asking her to read me the ketchup label--those industrial-sized packages I'm sure are just a glutening waiting to happen. I'm just going to send my own. Some battles are better won with a big cooler full of condiments from home. Maybe I can grab some ketchup packets from McDonalds before she leaves...

How long will she be at camp? That sounds tricky, for sure. I think the cooler full of condiments sounds like a very good idea!

Rho

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,072
    • Most Online (within 30 mins)
      7,748
    Gloria Costanza
    Newest Member
    Gloria Costanza
    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

    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
×
×
  • 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.