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EBsMom

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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

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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...

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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

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    • 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
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      By knitty kitty · Posted

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    • Wheatwacked
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      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
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      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
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      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.  
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