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Eight Months Gluten Free And Still Issues?

tfrankenberger

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tfrankenberger Apprentice
tfrankenberger
Posted

My son is 14 years old and has been gluten free for eight months. We've seen improvement and his doctor says he should definitely be healed by now. But he still has bouts of nausea and stomach discomfort. He belches a lot and they are long and deep ones. It's like he has a lot of gas build up or something. We keep a medicine log to see how often he takes something for stomach discomfort, and it's almost every day. He may have a "good" day or two but then he'll have an "off" day where he has to take Pepto or Tums or Zofran if it gets really bad. He's been tested twice to make sure he's not ingesting gluten accidentally and they both came back fine. He is on a strict diet which is gluten free, soy free, nut free, and dairy free. We've started taking Culturelle and digestive enzymes regularly.

Help!!! I don't know why he's not feeling better for longer periods of time....anyone else experience anything like this??

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debmom Newbie
debmom
Posted

It took my now 17 year old daughter almost 2 years to heal completely-- and I'm still not sure she's there. I wonder if the Culterelle could be causing it. Some probiotics can give you lots of gas and belching-- a good sign that it's not the type of bacteria you need. we did not do well on Culterelle either. Try another type and see if that helps.

tarnalberry Community Regular
tarnalberry
Posted

Is he still drinking milk? Lots of gas is a primary sign of lactose intolerance.

mstroud Rookie
mstroud
Posted

My 8 year old son continued to have stomach pain a year after he went gluten free. I finally took him off of corn and it helped a lot. He can have corn starch or meal in things such as Glutino pretzels, but I really try to keep him off of tortilla chips, corn, and limit the amount of corn based cereal he has (Corn Chex, etc). It really did help a lot and was pretty immediate!

Whatever the culprit is ... I hope you figure it out! Good luck!

tfrankenberger Apprentice
tfrankenberger
Posted
  • Author

Yes, we totally took him off of all dairy as of end of July.

alex's dad Newbie
alex's dad
Posted
My son is 14 years old and has been gluten free for eight months. We've seen improvement and his doctor says he should definitely be healed by now. But he still has bouts of nausea and stomach discomfort. He belches a lot and they are long and deep ones. It's like he has a lot of gas build up or something. We keep a medicine log to see how often he takes something for stomach discomfort, and it's almost every day. He may have a "good" day or two but then he'll have an "off" day where he has to take Pepto or Tums or Zofran if it gets really bad. He's been tested twice to make sure he's not ingesting gluten accidentally and they both came back fine. He is on a strict diet which is gluten free, soy free, nut free, and dairy free. We've started taking Culturelle and digestive enzymes regularly.

Help!!! I don't know why he's not feeling better for longer periods of time....anyone else experience anything like this??

hi we have a 12 year old daughter just new to this she started around june of this year, we have learned that tums has gluten and milk in it. she has been gluten free for about a month with little sucess, hope this helps some.

chatycady Explorer
chatycady
Posted

Knowing what I know now, I would eliminate all processed foods. Stick to the good stuff, fresh fruits, fresh veggies, fresh meat and eggs and see if the symptoms go away. Then slowly add in starch and grains and see what happens.

Protein is usually tolerated very well. Carbs are not.

Since I started reading labels I found the gluten free processed food is really high in carbs.

You can read more about different diets here on this website. I follow the Specific carbohydrate diet and it's solved my problem.

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crystalwaters Newbie
crystalwaters
Posted
Knowing what I know now, I would eliminate all processed foods. Stick to the good stuff, fresh fruits, fresh veggies, fresh meat and eggs and see if the symptoms go away. Then slowly add in starch and grains and see what happens.

Protein is usually tolerated very well. Carbs are not.

Since I started reading labels I found the gluten free processed food is really high in carbs.

You can read more about different diets here on this website. I follow the Specific carbohydrate diet and it's solved my problem.

crystalwaters Newbie
crystalwaters
Posted

My daughter took almost a year to heal. She was diagnosed at age 4 and is now 8.

Have you checked your toothpaste and lip balm?

We now have a completely gluten-free house (including hand soap, dish soap, lotion, shampoo, and laundry detergent) and we still struggle with diarrhea and growth. grrrrr

Stay vigilant.....

glutenfreeprincess Newbie
glutenfreeprincess
Posted

I feel your pain! We struggled with the same symptoms. And FINALLY found out how to CURE it!

What blood type is your son? Sounds like he needs a good digestive enzyme. Bromelain (if he's a blood A or AB) by country life is gluten free, soy free, and dairy free. Crushing it into a fine powder is best, then mix with a little juice or water. O blood type needs a papaya enzyme.

Also look into "oil pulling". Unrefined sunflower oil is best. In the morning, before eating, drinking, or brushing your teeth, take a tablespoon of oil and swish it in your mouth for 10- 15 minutes. Do not swallow or gargle it. Spit it out and rinse mouth out REALLY well. Follow with a glass of water. This has helped with a lot of the same symtoms and issues you mentioned.

Best in health!!!

glutenfreeprincess Newbie
glutenfreeprincess
Posted
I feel your pain! We struggled with the same symptoms. And FINALLY found out how to CURE it!

What blood type is your son? Sounds like he needs a good digestive enzyme. Bromelain (if he's a blood A or AB) by country life is gluten free, soy free, and dairy free. Crushing it into a fine powder is best, then mix with a little juice or water. O blood type needs a papaya enzyme.

Also look into "oil pulling". Unrefined sunflower oil is best. In the morning, before eating, drinking, or brushing your teeth, take a tablespoon of oil and swish it in your mouth for 10- 15 minutes. Do not swallow or gargle it. Spit it out and rinse mouth out REALLY well. Follow with a glass of water. This has helped with a lot of the same symtoms and issues you mentioned.

Best in health!!!

Also check out holy basil capsules. I try to avoid tinctures since they contain alcohol.

karid Newbie
karid
Posted

I just registered on this forum and was just about to post this exact same thing.

My now 4-yr old daughter was diagnosed in Feb with celiac disease (two positive blood tests and positive biopsy, Marsh score 3b-c). She was 3.5 at the time.

It's been 8 months and we've been very strict gluten-free. She was just retested with a blood test and it was normal (even less antibody results than when she really was normal). However, she's still been complaining every day, multiple times a day that her tummy hurts. All day long, my tummy hurts. Even waking up at night sometimes with my tummy hurts. I've been giving her pepto-bismol chewable tablets for kids and that seems to help. I don't know what to do (was going to call doctor tomorrow), so I thought I'd check here and voila I see this thread.

I always heard that kids heal faster and it would only take a few months (like 1 or 2), so I thought she'd be totally healed by now. Maybe not. Other things I'm considering are milk allergy, corn allergy, if she has an issue with milk fats, or maybe she's just milk sensitive due to damaged intestines that haven't healed yet.

Of course, you've already taken your son off milk though - so it just might be that 8 months is just not long enough to heal. I really hope (sad to say) that she's just not totally healed because milk or corn avoidance in addition to gluten is just so hard (kudos to all you out there who do this). I thought just going gluten free was hard.

katie may Newbie
katie may
Posted

Moms & Dads,

Don't be discouraged! Digestive issues aren't black and white. When I discovered that I am Celiac ( I was almost 18 and am now getting closer to 20), I thought it'd be as simple as cutting out gluten. I was wrong! Gluten sensitivity and allergy can cause a number of other issues like leaky gut, as is my case, other allergies, as is also my case, bacterial overgrowth and Candida overgrowth. Keeping a food journal is definitely helpful in pinpointing problems. I've found that Elaine Gottschall's book Breaking the Vicious Cycle covered a lot of these extra issues but she isn't the only source. Also, trust your instincts. If you have an intuition about a food, even if you don't want to believe it is causing problems, eliminate it, or even research about it to see if others are having problems with it too. Research is a good idea in general. Gut issues really are tricky, since the intestines really do require a nice harmonious balance to be healthy. Once you figure out what's troubling your children, you can do something about it. Don't always be fooled to believe that gluten cross contamination causes every ill; I've found that it doesn't. Even fruit can be a problem for someone with a damaged intestine.

God bless you with healing & abundance (Proverbs 15:15)!

tfrankenberger Apprentice
tfrankenberger
Posted
  • Author

Yes, since July he has been soy free, nut free, and dairy free along with his gluten free status. We're also currently avoiding potatoes and tomatoes. I'm at the point now where if we can ever go to just gluten free then we will absolutely celebrate!!!!!!!!!!!!!!! Going dairy free has been the hardest next to the gluten.

Pepto does work for him occasionally. I've got him taking digestive enzymes. I just took him off of the Culturelle probiotic (dairy free) because it seemed to get worse, the gassy symptoms.

Before he was diagnosed with Celiac, when we were still searching for answers, he was placed on Prevacid because the doctor thought he might have an ulcer and/or reflux. I thought recently that maybe he does have reflux but it makes him feel nauseas instead of pain or burning???? I put him back on Prevacid (still had some) for a three week trial. I write everything down every day, including what his bowel movements are like. We're on day 5 of the Prevacid, and he's also taking the digestive enzymes, and so far he has been symptom free. We'll see how long that lasts. I think the longest time he's ever gone during this whole eight months without complaining of something was about a week. If he goes the whole three weeks, maybe I have my answer??

You definitely might need to take her off the dairy. I've heard so many get other intolerances at least in the beginning. Sometimes they go away, and sometimes they don't. We may try the dairy again after the one year mark. He was tested for allergies and the GI said he didn't have any, so maybe the intolerances will go away at some point.

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