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6 Year Old Gluten Free And Still In Pain

Julia'sMom

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Julia'sMom Newbie
Julia'sMom
Posted

HI! My 6 year old was recently diagnosed w/celiac disease. She has gastritis and is taking prevacid. She has been gluten free for 2 1/2 months and is still having severe pain around her belly button. We have ruled out baceterial overgrowth and done tons of stool samples. All her blood work is normal. She has been put on bentyl and it is not helping. Does anyone have any suggestions -- she is miserable. THANKS

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GlutenGalAZ Enthusiast
GlutenGalAZ
Posted

Have you cut out dairy? If you have not... a lot of people once they go gluten free have a problem with dairy while their stomach is healing. You can re-introduce dairy later on. Some people (not everyone) also have problems with soy.

Does your daughter have any other food intolerances that maybe have not been caught yet. You might want to do either an elimination diet and or keep a food journal. With keeping track of the food she is eating you can figure out if a certain meal/food bothers her more.

Have you checked your kitchen for any type of CC? Toasters being shared old pots and pans that could have build up on them or counters with crumbs? Even peanut butter jars or butter containers getting crumbs in them. Also soaps, laundry detergents, shampoos etc -- some people are more sensitive than others. I have made sure all of my lotions, shampoos soaps etc are gluten free.

Does she encounter sharing of foods at school/daycare? Even play dough and some craft supplies have gluten in them.

Hope she starts to feel better soon.

Good Luck

Darn210 Enthusiast
Darn210
Posted

I would double check everything. Don't forget meds and vitamins. Also look at items that are gluten free but may have been cross-contaminated before she went gluten free . . . sugar bowl, chapstick, toothbrush, peanut butter, can opener, pasta strainer, mayo, mustard, etc.

If you can't find anything, I would try dairy free like GlutenGal said.

dandelionmom Enthusiast
dandelionmom
Posted

Going lactose free was really important for my daughter. If you haven't tried that, you might want to. We only had to do it for a couple of months to give her a chance to heal. Hope you find your answer!

debmom Newbie
debmom
Posted

It took my daughter 6 weeks for the pain to go away, and that was being incredibly strict. she also had severe gastritis and acid reflux, so I'm guessing that they take a long time to heal. Be patient, and try to eliminate all possible gluten. Is the pain slowly getting better? Have other symptoms abated?

AndrewNYC Explorer
AndrewNYC
Posted

Put her on an elemental diet formula (tolerex, vivonex) for 2 weeks. Once she has healed then reintroduce things one by one to see what she can tolerate.

FoxersArtist Contributor
FoxersArtist
Posted

I read some things stating that yeast in the gut can cause symptoms to hang around. Also, I have been seeing a Dr. who studies oriental meds and he informed me that about 70% of the US suffers from parasites, which can also continue irritation after celiac is treated. Many times when labs for things like parasites are sent away, they come back with false negatives. I might also try going dairy free.

-Anna

HI! My 6 year old was recently diagnosed w/celiac disease. She has gastritis and is taking prevacid. She has been gluten free for 2 1/2 months and is still having severe pain around her belly button. We have ruled out baceterial overgrowth and done tons of stool samples. All her blood work is normal. She has been put on bentyl and it is not helping. Does anyone have any suggestions -- she is miserable. THANKS
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Rachel--24 Collaborator
Rachel--24
Posted
I read some things stating that yeast in the gut can cause symptoms to hang around. Also, I have been seeing a Dr. who studies oriental meds and he informed me that about 70% of the US suffers from parasites, which can also continue irritation after celiac is treated. Many times when labs for things like parasites are sent away, they come back with false negatives.

I've seen the percentage for those of us with parasites at over 90%! Unfortunately, like you said the tests arent usually picking them up. There are hundreds of different parasites but testing is only available for a maybe around 50 of them.

Awhile back I was seeing a Dr. who specialized in gluten intolerance and leaky gut issues. He told me that EVERY patient he's seen with gluten intolerance who continues to have problems has some sort of infection...either bacteria, yeast or parasites. Parasites was the biggest one. He said when the intestinal lining is damaged there are little pockets where the parasites make their home.

When the immune system is strong most of the time these unwanted guests dont get to hang around...but when we're weakened by gluten or some other stressor the parasites can end up finding a home.

He said that after we start the diet and there is healing taking place these pockets heal as well...so the parasites lose their home....however, they're still there in the gut and they can be the cause for ongoing symptoms and/or lack of healing.

I also agree with the previous suggestions of removing dairy for a period of time.

FoxersArtist Contributor
FoxersArtist
Posted

Along with my diagnosis of celiac, the oriental Dr I am seeing sent a specimen off to a lab outside of the us. They found both giardia and roundworms. Totally gross to think that even in modern society, we still have parasites. I have't decided yet how i'm going to deal with that problem. His special herbal medication to kill the worms was something to the tune of $700. I have decided to try to heal a little from the celiac before crossing the parasite bridge and then doing some kind of colon clense. We'll see how it goes. Amazing how suceptable we can be without even knowing it!

-Anna

I've seen the percentage for those of us with parasites at over 90%! Unfortunately, like you said the tests arent usually picking them up. There are hundreds of different parasites but testing is only available for a maybe around 50 of them.

Awhile back I was seeing a Dr. who specialized in gluten intolerance and leaky gut issues. He told me that EVERY patient he's seen with gluten intolerance who continues to have problems has some sort of infection...either bacteria, yeast or parasites. Parasites was the biggest one. He said when the intestinal lining is damaged there are little pockets where the parasites make their home.

When the immune system is strong most of the time these unwanted guests dont get to hang around...but when we're weakened by gluten or some other stressor the parasites can end up finding a home.

He said that after we start the diet and there is healing taking place these pockets heal as well...so the parasites lose their home....however, they're still there in the gut and they can be the cause for ongoing symptoms and/or lack of healing.

I also agree with the previous suggestions of removing dairy for a period of time.

Ursa Major Collaborator
Ursa Major
Posted

I just finished a parasite cleanse that only costs $29.95 plus shipping (another $3.75 I think) and when I showed it to my naturopathic doctor he told me that it was better (and much less expensive) than what he had been using with his patients, and he was switching!

Here is the link: Open Original Shared Link

I must have had a million parasites come out of me in the 30 days I was on the cleanse. I finished five days ago, and find that for the first time in probably 25 years my hands and feet don't swell at all. I wonder what other good things will show up next.

And Julia's mom, they have a kid's formula as well, that is for children 2 years and up.

Rachel--24 Collaborator
Rachel--24
Posted

As far as prescriptions go Alinia is a broad spectrum antiparasitic. Its effective for treating a LONG list of parasites....including Giardia.

FoxersArtist Contributor
FoxersArtist
Posted

Hey, thanks a bunch! I'm happy to hear from someone who has actually tried a product. I have been a bit skeptical of paying hundreds of dollars for a cleanse. Not to mention we can't really afford that since Whole Foods Market is officially taking most of our paycheck now. ;)

-Anna

I just finished a parasite cleanse that only costs $29.95 plus shipping (another $3.75 I think) and when I showed it to my naturopathic doctor he told me that it was better (and much less expensive) than what he had been using with his patients, and he was switching!

Here is the link: Open Original Shared Link

I must have had a million parasites come out of me in the 30 days I was on the cleanse. I finished five days ago, and find that for the first time in probably 25 years my hands and feet don't swell at all. I wonder what other good things will show up next.

And Julia's mom, they have a kid's formula as well, that is for children 2 years and up.

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