Jump to content
  • Sign Up
  • Join Our Community!

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

RissaRoo

Sos...what Now?

Rate this topic

Recommended Posts

Argh, I am having such a tough time right now! My poor 11 yr old son is not doing well. He's been gluten-free for about 3 years and had been doing fine, but for about 1/2 year he's had tummy aches off and on. In the last 6 weeks or so, he has started having stomach aches every day. He gets them after he eats and at night. We saw a dr. who thought it might be reflux, and he's on Prevacid...it's been 2 weeks and initially things were really looking better, he had fewer stomach aches and they were much less severe. However, he's still getting them and the last few days they've been just as bad as they used to be. Help! Does anyone else have a kid with symptoms like this? What should I do? The dr. says that sometimes it can take up to 1 month for the meds to really work, but I'm worried that there's something else wrong. I really don't think it's connected to gluten, we've been very careful and he hasn't eaten out or anything that would lead me to believe he's been glutened. Any advice? I hate, hate hate this...it's so hard to see him sick and I hate the idea of putting him through a bunch of tests to figure out what's wrong!

Share this post


Link to post
Share on other sites

He might have developed another intolerance, possibly to dairy and/or soy. Or something else altogether. I get symptoms like that from legumes (not really green beans, but from kidney beans especially), eggs and rice. And from nightshades vegetables. Especially potatoes will cause stomach and bowel problems, including reflux.

There is a reason for the reflux. Medication will not fix anything, but rather just cover up symptoms.

Share this post


Link to post
Share on other sites
He might have developed another intolerance, possibly to dairy and/or soy. Or something else altogether. I get symptoms like that from legumes (not really green beans, but from kidney beans especially), eggs and rice. And from nightshades vegetables. Especially potatoes will cause stomach and bowel problems, including reflux.

There is a reason for the reflux. Medication will not fix anything, but rather just cover up symptoms.

I agree, I think there's other allergies/intolerances going on. I have been thinking about trying NAET, which my aunt has been doing. She had tons of food issues, and she is much better already. Have you heard of that? Any advice?

Share this post


Link to post
Share on other sites

We are going through something similar with my daughter. Prevacid is suppose to take two weeks to kick in. Right now, I took my daughter off of the long term antibiotic that she was on for gastroparesis (she has no problem with her appetite and is gaining weight so I see no reason to still be on this). Since she was on it for a long time, I have started her on probiotics. I am also treating her as if she is lactose intollerant . . . her endoscopy said she was but everyone assumed that when she healed she would no longer need the lactaid milk & chewable tablets . . . so I have reinstated the lactaid. So far, so good. She says she feels better. She is still on one prevacid/day (we were on two/day). It's only been five days so we have quite a ways to go and then we'll see if we can wean her off of her other prevacid. If she starts back up with the acid reflux (breaking through while on the prevacid - like before) then I plan on taking her off dairy.

Share this post


Link to post
Share on other sites
We are going through something similar with my daughter. Prevacid is suppose to take two weeks to kick in. Right now, I took my daughter off of the long term antibiotic that she was on for gastroparesis (she has no problem with her appetite and is gaining weight so I see no reason to still be on this). Since she was on it for a long time, I have started her on probiotics. I am also treating her as if she is lactose intollerant . . . her endoscopy said she was but everyone assumed that when she healed she would no longer need the lactaid milk & chewable tablets . . . so I have reinstated the lactaid. So far, so good. She says she feels better. She is still on one prevacid/day (we were on two/day). It's only been five days so we have quite a ways to go and then we'll see if we can wean her off of her other prevacid. If she starts back up with the acid reflux (breaking through while on the prevacid - like before) then I plan on taking her off dairy.

Oh! I'm sorry you're daughter is having troubles, but it's good to see we're not alone. I have suspicions about dairy with my son, too...I think I may take him off dairy again and see what happens. I hate reflux! It's so hard to see your kids suffer, and it seems to crop up with no warning despite all efforts to control it. Sigh. What dose of Prevacid was your daughter on? I have been thinking that maybe my son needs to taking it twice a day. It just seems like he needs a boost in the evenings, because that's when it's the worst and if he has an attack at night it often carries over until the morning.

I'll say a prayer that your efforts in weaning off the meds will go smoothly! Was the antibiotic for motility or H-whatever-it-is bacteria? I hate the idea of antibiotics long term, but his dr. has mentioned the possibility. Probiotics is a great idea, a friend of mine also swears by aloe vera juice. It's kind of nasty, but it does seem to help. How old is your daughter?

Share this post


Link to post
Share on other sites
Oh! I'm sorry you're daughter is having troubles, but it's good to see we're not alone. I have suspicions about dairy with my son, too...I think I may take him off dairy again and see what happens. I hate reflux! It's so hard to see your kids suffer, and it seems to crop up with no warning despite all efforts to control it. Sigh. What dose of Prevacid was your daughter on? I have been thinking that maybe my son needs to taking it twice a day. It just seems like he needs a boost in the evenings, because that's when it's the worst and if he has an attack at night it often carries over until the morning.

I'll say a prayer that your efforts in weaning off the meds will go smoothly! Was the antibiotic for motility or H-whatever-it-is bacteria? I hate the idea of antibiotics long term, but his dr. has mentioned the possibility. Probiotics is a great idea, a friend of mine also swears by aloe vera juice. It's kind of nasty, but it does seem to help. How old is your daughter?

She is currently on 15mg/day. However, the reflux would break through every 10 days or so. Before she was diagnosed with celiac, they were talking about doubling it. She was put on erythromycin for gastroparesis. She was taking a low dose 30 minutes before each meal to increase motility. First time around she was on it for about 2 months (May&June). The second time, because the reflux was breaking through the prevacid again, she was on it for about 6 weeks before I decided we were done with it (last Friday). It wasn't helping. In fact, you're suppose to take it with a meal because it's hard on the tummy. Before Christmas, she brought home a tummy bug from school and it really caused the acid to flare. I called the pediatrician (because the GI doesn't get back to us in a timely manner) and asked if we could double the prevacid. She agreed and so my daughter was on 15mg twice a day. But my goal is to get her off of everything, not keep adding so after 3 weeks I took her back down to once a day.

So here is some interesting facts that a GI doc told me (he's the doc we went to for a 2nd opinion when this all started): You should take your prevacid (or whatever reflux med you're on) 30 minutes before you eat in the morning. Otherwise, it is not as effective (digesting your food will sweep it through quicker). He said that a lot of people don't take it early enough, have physical relief, but are still doing damage because they are not adequately controlling the acid. He said that if you can't take it 30 minutes before breakfast, or if you are particularly troubled by night time reflux, then it is OK to take before bed (I think it's 2 hours after eating).

One of the things that I noticed whenever my daughter had days that the acid would break through was that it was always (I think always or almost always) school days. I was thinking it was because recess and lunch time were right together and her tummy was "jumbled". Then I started thinking, she never takes her prevacid 30 minutes before breakfast on school days. I would give it to her when I wake her up for school but she immediately gets up and gets dressed and comes down for breakfast. She is usually eating within 15 minutes. So last night, I started giving her the prevacid before going to bed.

I honestly think it is caused by an intolerance. Like I said before, we are currently treating her as if she is lactose intolerant (I think there is a decent chance she is), but we are also watching blue dye (that is something we discovered this summer) and MSG. The MSG is just a guess, but it certainly doesn't hurt to not have it.

Share this post


Link to post
Share on other sites
Im in the same boat. Horrible stomach acid that is somewhat controlled by prevacid, but I cannot seem to find the cause. Im just wishing you the best of luck!!

Sorry to hear that! From what my son says, it's just no fun. How long has it been going on?

Share this post


Link to post
Share on other sites
She is currently on 15mg/day. However, the reflux would break through every 10 days or so. Before she was diagnosed with celiac, they were talking about doubling it. She was put on erythromycin for gastroparesis. She was taking a low dose 30 minutes before each meal to increase motility. First time around she was on it for about 2 months (May&June). The second time, because the reflux was breaking through the prevacid again, she was on it for about 6 weeks before I decided we were done with it (last Friday). It wasn't helping. In fact, you're suppose to take it with a meal because it's hard on the tummy. Before Christmas, she brought home a tummy bug from school and it really caused the acid to flare. I called the pediatrician (because the GI doesn't get back to us in a timely manner) and asked if we could double the prevacid. She agreed and so my daughter was on 15mg twice a day. But my goal is to get her off of everything, not keep adding so after 3 weeks I took her back down to once a day.

So here is some interesting facts that a GI doc told me (he's the doc we went to for a 2nd opinion when this all started): You should take your prevacid (or whatever reflux med you're on) 30 minutes before you eat in the morning. Otherwise, it is not as effective (digesting your food will sweep it through quicker). He said that a lot of people don't take it early enough, have physical relief, but are still doing damage because they are not adequately controlling the acid. He said that if you can't take it 30 minutes before breakfast, or if you are particularly troubled by night time reflux, then it is OK to take before bed (I think it's 2 hours after eating).

One of the things that I noticed whenever my daughter had days that the acid would break through was that it was always (I think always or almost always) school days. I was thinking it was because recess and lunch time were right together and her tummy was "jumbled". Then I started thinking, she never takes her prevacid 30 minutes before breakfast on school days. I would give it to her when I wake her up for school but she immediately gets up and gets dressed and comes down for breakfast. She is usually eating within 15 minutes. So last night, I started giving her the prevacid before going to bed.

I honestly think it is caused by an intolerance. Like I said before, we are currently treating her as if she is lactose intolerant (I think there is a decent chance she is), but we are also watching blue dye (that is something we discovered this summer) and MSG. The MSG is just a guess, but it certainly doesn't hurt to not have it.

Isaiah's tummy issues started after a bout with the flu, too. He had a really nasty stomach virus that caused a lot of vomiting, and after that his tummy has been acting up. At first it was just once or twice a month, then once a week, and in the last 6 weeks it's been more like once or twice a day :o( On the Prevacid, he's had some days with no tummy aches, or with very slight pain that goes away quickly. However, we have had 3 days with the old sort of problems. It's comforting to know that maybe it's just going to take awhile for the meds to kick in right. He's on 30 mg once a day, but I wonder if 15 in the morning and 15 at night would work better. I guess we'll see how it goes, he goes back on the 1st and hopefully things will have improved enough that he won't have to have further tests. Poor little guy! I would really like to avoid all the testing if at all possible.

We currently homeschool, so school hasn't been an issue. I am going to watch closely and see if I can identify anything that's causing things to be worse, I read up on foods that make reflux worse and maybe avoiding them will help. Let me know how it works giving her Prevacid in the evening, we might need to try that too!

Share this post


Link to post
Share on other sites

Two years ago, my daughter had a terrible case of stomach flu. She had vomitting and diarrhea for about a week. It had gotten to the point where they were starting to test if she had parasites or some other bacterial infection when it cleared up. I think this was the trigger for her celiac and it left her with acid reflux that would come and go. Eventually, the acid reflux would no longer "go". This led us to the pedGI and eventual celiac diagnosis. However, along the way, both my pediatrician and the pedGI said that the severe stomach flu can cause nerve damage in the stomach which results in gastroparesis (slow motility). This type of gastroparesis is expected to eventually go away as the nerves should heal . . . although they heal slowly.

You may want to check into gastroparesis . . . is he having trouble with his appetite? Not being able to eat a full meal? Still full when it is time to eat again?

Also, a bad case of stomach flu can lead to an imbalance of the good vs bad bacteria in the gut in which case a probiotic would be helpful. I think this is definitely worth pursuing.

Share this post


Link to post
Share on other sites

My son Michael was born with infant reflux. There are a few suggestions I can make that helped with Michael. His reflux will still come back on occasion but he has basically outgrown it.

1. We always found that Prevacid takes at least 2-3 weeks to reach theraputic levels and to really see a difference even if we were upping the dosage.

2. You HAVE to give it 30 minutes before or two hours after eating for it to work properly. Anything less than 30 minutes and they just metabolize it too quickly with their food.

3. If your child has a dairy allergy or intolerance, the Prevacid Solutabs have trace amounts of dairy in them. They may have changed the formula since then as it was over a year ago. Michael was allergic to dairy and had a terrible time with them. We used the capsules. I broke them open and poured the little beads on apple sauce and he took them no problem.

4. Michael's dose always worked better if we split it in half. 15 mg Am 15 mg before bed. It would help with the nighttime reflux.

5. We also had him up on a wedge on his crib mattress. This helped him sleep much better. An older child could use 2 pillows at an angle or a rolled towel under the head of the mattress to put it at an angle.

6. He was breast feeding while he had the reflux so he wasn't eating anything solid however I avoided greasy foods and due to the soy/dairy allergy I also avoided all foods containing soy and dairy until he was done at 2 years. When he started eating table food we obviously avoided the allergy foods but also tried to stay away from greasy, acidic or too spicy foods as well.

7. The biggest thing that helped us with breakthrough acid was Mylanta Cherry Supreme. Now I received an email from Merck and also online postings that Children's Mylanta chewables bubble gum flavor are gluten free as well as liquid mylanta extra strength original are also gluten free. They were also dairy free last I looked but that hasn't been an issue lately so I haven't checked. The Cherry Supreme is not listed on these lists so I am assuming the cherry flavor is the problem. The original tastes like mint, it's not great but mine will take it when their bellies hurt. I also use it with Katharine when she gets accidental Gluten and it helps a bit with the gas and sour tummy. Mylanta was a heaven sent for us, it really helped Michael settle down right away when he had flare ups.

You probably already know all of these things, but I hope this helps a little. I will be thinking of you, reflux is so terrible! I hope your little one feels better soon.

Share this post


Link to post
Share on other sites

Thank you for the advice! Right now thing seem to be going a little better. We are doing the prevacid early in the morning and waiting for 1/2 hour or more before eating. He has had 3 days in a row where he's not had many tummy issues! He still does have evening tummy aches but they are milder each day. I am just praying that it continues to improve! Also, he's got some sort of flu/cold grunge that seems to have made things worse. Hopefully we will see things get better soon! I just would love to see a "normal" day for him be a day when he feels *good*.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Blog Entries

  • ×
    ×
    • Create New...