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Need Help With Sibo In Kids--Input?


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#1 mamaupupup

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Posted 25 January 2013 - 09:06 PM

Hi there,
We have a six year old who was diagnosed a year ago with Celiac. We were gluten-free and happy/no problems until about month 9 gluten free. She developed abdominal pain below her belly button which is moderate, constant pain and sometimes flares up. We have had numerous doctors visits (also with our Celiac GI) and are now embarking on an effort to clear up "SIBO" which is the current diagnosis.

Any experience with this? Thoughts? Suggestions on diet? What worked? What didn't?

Thanks in advance for input!
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#2 GottaSki

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Posted 25 January 2013 - 09:34 PM

Unfortunately - I have experience.

Surprised only that we are discussing a young child -- my thinking is that if caught early the digestive system can recover with only removing gluten.

?s

Do you use processed/prepackaged gluten-free foods regularly? If so -- cut those first. Keep with whole foods, rice and corn is fine -- unless a problem is detected.

Perhaps cut out citrus.

Take it slow in removing foods for now...it may be something simple.

Keep a food log -- patterns emerge with the diary that are hard to detect without it.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 mamaupupup

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Posted 27 January 2013 - 09:46 AM

Hi Lisa,
Thank you so much for your input. It's interesting, we see two specialists in LA--a GI pain specialist and a Celiac researcher. The pain specialist is also considered one of the thought leaders in SIBO in kids. From what I'm gathering, SIBO is typically an adult "term" and that there are lots of kids with undiagnosed SIBO.

We removed almost all the processed foods in our quest for finding an offending food group/ingredient. So far we have logged diet, found some offenders and have eliminated the following (without 100% improvement): gluten (she has Celiac and we have a 100% gluten-free home and homeschool so little if any cc), lactose, polyols, soy (including soy lecithin, etc), nightshades (tomato was horrible for her), avocado, canola oil, peanuts, some galactans (no soy, no beans, no lentils). Basically, we are on a low fodmap diet with additional restrictions.

What our diary is showing now that we've gotten to a level of whole foods/get rid of lots of stuff is that there is constant pain with flare ups that (in my opinion) are related to ingesting carbs (including rice). Other than pain, bloating is her main complaint with some harder stools (not constipation) when she hasn't had enough fluids.

The pediatrician has prescribed flagyl as the antibiotic to give her, but I'm thinking/considering whether or not we're going to give it to her.

More thoughts?
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#4 GottaSki

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Posted 27 January 2013 - 09:51 AM

Hi Lisa,
Thank you so much for your input. It's interesting, we see two specialists in LA--a GI pain specialist and a Celiac researcher. The pain specialist is also considered one of the thought leaders in SIBO in kids. From what I'm gathering, SIBO is typically an adult "term" and that there are lots of kids with undiagnosed SIBO.

We removed almost all the processed foods in our quest for finding an offending food group/ingredient. So far we have logged diet, found some offenders and have eliminated the following (without 100% improvement): gluten (she has Celiac and we have a 100% gluten-free home and homeschool so little if any cc), lactose, polyols, soy (including soy lecithin, etc), nightshades (tomato was horrible for her), avocado, canola oil, peanuts, some galactans (no soy, no beans, no lentils). Basically, we are on a low fodmap diet with additional restrictions.

What our diary is showing now that we've gotten to a level of whole foods/get rid of lots of stuff is that there is constant pain with flare ups that (in my opinion) are related to ingesting carbs (including rice). Other than pain, bloating is her main complaint with some harder stools (not constipation) when she hasn't had enough fluids.

The pediatrician has prescribed flagyl as the antibiotic to give her, but I'm thinking/considering whether or not we're going to give it to her.

More thoughts?


What was her reaction to avocado?

I ask because it was a one-off food that made me bloat like crazy during my elimination diet. Nearly a year later I realized my intolerance of histamine containing and histamine inducing foods.

Might want to take a look at this:

http://www.allergyuk...Intolerance.pdf
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 mamaupupup

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Posted 27 January 2013 - 05:54 PM

Wow! This is an amazing perspective! Thank you! I'm going to go to the kitchen, eat some chocolate chips, do the dishes, get kids to bed and come back an re-read that! Thank you! I doubt we would have ever thought to look at the histamine list! She's still eating a tiny bit of chocolate, pineapple, and many other things on that list!

Avocado made her severely bloated, poor thing. Can't wait to get kids off to bed and research more! Thank you!
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#6 GottaSki

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Posted 27 January 2013 - 09:41 PM

You are more than welcome -- let me know if you can't find info...I have found some interesting papers and websites over the past few months related to Histamine.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 mamaupupup

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Posted 28 January 2013 - 08:11 AM

:) thanks Lisa! I'll take any/all links to this you have. A couple questions:
- I've read mixed reviews on the DAO blood serum test. Have you read anything definitive? What is your opinion?
- Have you read anything about doing a two week trial where you go on anti-histamines for two weeks--if symptoms go away (they are supressed, really), then go through the effort to do a low-histamine diet and eliminate offending foods?

I so appreciate your help!
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#8 GottaSki

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Posted 28 January 2013 - 10:19 AM

The lab at UCSD along with conversations with Mayo could not figure out how to run DAO levels -- crazy and sad, but true.

I had tried every antihistamine available while trying (in vain) to diagnose my extreme intolerance to heat and exercise with my allergist -- only one that ever worked for me is Benedryl -- problem was it makes me so tired I cannot exercise and have no desire to go outside on a warm day -- kinda defeated the purpose.

I removed histamine foods officially just after thanksgiving -- has helped my overall health emensly -- I do hope and believe this is the last piece of my very complex health puzzle. Should add that several foods that are recommended to avoid were already on my no-no list -- spinach and pumpkin were surprises -- I ate alot of spinach and some pumpkin over the past few years.

Because I had already gone thru a strict elimination diet that found most of my intolerances -- removing histamines was easy for me -- since your daughter bloats with avocado and other random foods it may be worth the effort for you.

I'm on a different computer right now -- will post some links when I get to that computer
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 GottaSki

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Posted 29 January 2013 - 06:00 AM

Here is another link regarding what foods to avoid.
http://www.urticaria....htm#foodsource

This page made me realized why I failed the GAPS diet -- I could not eat the fermented food recommended -- only the bone broth.
http://www.ehow.com/...mine-foods.html

I can't seem to find my file of links to research papers with regard to histamine inloerance -- I'll keep looking.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 mamaupupup

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Posted 05 February 2013 - 10:31 PM

Hi Lisa,
Thank you so much. We are going to the allergist tomorrow...we'll see how receptive she is... (She is the doctor who did finally do the Celiac testing for my kids after I had asked and been turned down by the pediatricians for 18 months...so, I have hope!).
:)
Courtney
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#11 mamaupupup

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Posted 09 February 2013 - 08:26 AM

As a quick update, we did the SIBO breath test yesterday at Children's Hospital in LA. Results due back Tuesday. Super simple test (the nurse had ME administer it...which was a slight bit annoying just because I'm sure it costs insurance an arm and a leg...). My daughter was a champ. Took about 2.5 hours all in.
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#12 GottaSki

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Posted 10 February 2013 - 02:50 PM

Hi Courtney-

Perhaps your doc has already told you the test for SIBO is not always accurate -- I had one last summer and doc thought it was accurate somewhere between 60 and 75 percent of the time -- I think I found similar statitistics when I researched it online.

If you administered it -- do you remember the highest number. You should be able to find info online to translate if you don't want to wait for the doc to get results on Tuesday.

The good news and the reason I took the test is if it is positive - that info is helpful.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#13 mamaupupup

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Posted 10 February 2013 - 06:13 PM

Hi Lisa--the test we did was to have my daughter "fill" a bag by breathing into it every 15 minutes. We capped the bag and labeled it. I think it gets sent off somewhere--so I don't know the numbers yet. I was thinking about the poor company that does these tests and HOPES for a higher accuracy rate--which could be higher if the nurses administered it (instead of the Mom!). I was quite fine at it (really punctual, etc), but it makes me wonder...

On another note, our allergist had "heard of" histamine intolerance but "needs to read up" on it (and wasn't too keen on doing even that). However, she did say that putting our daughter on anti-histamines full time for 1-2 months is a reasonable and ok thing to do to see if she improves. She'd do the child dose of Claritan 2x a day.

More on Tuesday...

Thanks for keeping up!
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