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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Need Help With Sibo In Kids--Input?
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19 posts in this topic

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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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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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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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.org/downloads/factsheets/intolerances-and-sentivities/Histamine%20Intolerance.pdf

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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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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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:) 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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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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Here is another link regarding what foods to avoid.

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.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/info_8110125_high-histamine-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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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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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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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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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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I have low hopes the OP will see this, but did you ever get results back? My daughter is getting breath tested in 2 weeks and I highly suspect SIBO. Her symptoms are exactly the same. 

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I found this thread to be really interesting. We are going through this with our 3 year old. She tested positive for Sibo after the extended breath test. @KBart or @mamaupupup any update on your kiddos? What worked or what didn't? 

We have tried 2 rounds of Flagyl and probiotics,  but there's still something going on. She goes for an endoscope next week, but I'd love to hear about your experiences. 

Hoping you may see this!

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Unforunately, we haven't had much luck with the SIBO stuff either. It's so frustrating.

Our GI would only do one round of Flagyl. It helped...but I don't think it totally got rid of it. She even did a repeat Endoscopy (to confirm celiac disease because of inconclusive results before) and they did an intestinal aspirate (tested the fluid in the intestine and cultured for bacteria). It was negative. So....I don't know where to go from here. I think she still has a touch of SIBO...but I'm just not sure. Her GI won't do anymore tests.  We try and control it with diet but she still has pain daily.  

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Posted (edited)

Parents,

have you looked into a Histamine Intolerance as Gotta Ski  discussed?  I know it is considered "new" here in the US.  (SIBO is more accepted in the US and HI is more accepted in Europe.)  I had been gluten-free for 2 1/2 years when I was glutened badly.  I was only anemic when I was first diagnosed.  After my glutening experience (confirmed by my GI through antibody testing) , it hurt to digest anything.  He suspected SIBO but I took the approach first of trying to heal from the gluten exposure.  I also broke out in hives/rash almost every few days.  It started always with tummy pain before the rash appeared.  Not everyone gets a rash with HI.  

It resolved months later when my gut healed.  Antihistamines helped as did the HI diet.  I also found that well-cooked foods were easiest to digest.  

Something to consider......I am not discounting SIBO at all!  It just might not be the only thing going on.  I was thankful that SIBO turned out not to be an issue for me!

 

 

Edited by cyclinglady
More info.
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Here is some information on the topic of histamine intolerance and Mast Cell Activation Syndrome.  This blogger is also a member of Celiac.com (Jebby).  She is a Neonatologist (premie baby doctor) who has celiac disease and four kids.  

http://www.thepatientceliac.com/tag/histamine-intolerance-and-celiac-disease/

 I hope you figure it out.  I have a healthy 15 year old and I would hate for her to experience any abdominal pain like your little ones.  

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Thank you for your responses @KBart and @cyclinglady .

I'll definitely talk with her GI about the possibility of HI. Sounds interesting, and I hadn't heard of that before. 

Her GI is going to be testing for celiac as well as problems with enzymes. I think I'll ask him to do an intestinal aspirate and some extra blood work as well. 

I just refuse to believe that we can't make this better for her. I think we will seek naturopathic help if we don't see drastic improvements after whatever is ordered from the endoscopy results. 

Thanks again for your help!

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