Sibo and Weight Gain/Gluten intolerance

[Aehrhart]

I am pretty desperate to just hear from anyone with a similar experience whether it be a parent of a child or an adult experiencing symptoms themselves. 

Our daughter was diagnosed with Type 1 Diabetes last April. We had her stool tested with Entero Lab which showed extreme gluten intolerance with a plethora of other food intolerances. She also tested positive for both genes associated with celiac. 

This summer we noticed a bloated belly show up accompanied with an increase in hunger. She did have a rapid weight gain post diagnosis which isn't uncommon due to the drop in weight prior to her diagnosis. 

I've always been interested in reading about healing foods, I had the GAPS book, Autoimmune Protocol, Amy Myers, etc books before my daughter was even born. She's always eaten an extremely healthy diet with fermented foods, no processed, gluten free since 2, etc. and yet, despite all of that, she tested positive for Sibo in December 2015 after working with a pediatric gi since September. 

I'm distraught. She's going to be 4 next month, she has a bloated belly, slightly overweight now, fatty stools, gassy, hungry ALL the time (even after eating), and she doesn't seem to be getting any relief. We've done 2 rounds of Flagyl followed by bio Gaia probiotics, but it doesn't seem to be helping. 

Thoughts? Anyone experienced anything similar? I cannot believe my 3 year old has everything I've tried to avoid with nutrition(leaky gut, autoimmune condition, Sibo, etc) how did this happen? How can I fix it?

[StephanieL]

There are not any reliable food intolerance tests so I'm not sure who you had these done through but there's nothing scientific backing them and they typically have you eliminate foods that aren't really an issue.

Are you working with an endocrinologist as well as a GI Dr? Have they sent you to a nutritionist? I know many of them are hit and miss as to how helpful they are but it may be worth a shot.  If you suspect Celiac disease the only way to get that confirmed would be testing. Perhaps you can start with the genetic test and if that is positive, it would require a minimum of 6 weeks on gluten to prove (perhaps more if they decide an endoscopy is necessary as well).

[Aehrhart]

We had her stool tested with Entero Lab. It is a fully accredited laboratory registered with the US Department of Health and Human Services. 

Open Original Shared Link

You can read about the science behind these tests at the link provided. It's actually quite remarkable. 

I'm not sure if she will turn out to be celiac or not. However, we did have her genes tested with Entero lab, and she expressed both genes associated with celiac. 

Since she's diabetic, yes of course we are working with a pediatric endocrinologist.  As written, we've been working with a pediatric GI since the fall. Her endocrinologist has RD's (dietitians) that we see, but they aren't very well versed on treating leaky gut through diet.

I guess our next step is to find a functional medicine doctor who treats children in our area. 

I was feeling quite desperate last night, and hoping to connect with anyone else dealing with Sibo with or without in conjunction with diabetes and celiac or gluten sensitivity.

I appreciate your reply!

 

 

[StephanieL]

I am not saying the lab isn't accredited but the tests themselves are not accurate in dx. an intolerance or sensitivity.  Do you have that done on your own or did one of your Dr's suggest it?  Again, I only ask because the science isn't there to support this kind of testing sadly. It would be nice if there were something but that's just not the case. 

Do you have a Mom gut thought on what the issue may be? Sometimes following that is most helpful thought difficult at times.  I found a food log of ALL intake and "output"  was the only thing helpful in figuring out long term what the issue was.  I know you said she's gluten free but are you providing all food?  Any chance she is getting into gluten via craft supplies? Preschool well intended teachers giving out treats?  

It' s no fun trying to figure out these mysteries and I am sorry you're dealing with this.

 

[cyclinglady]

I am so sorry that your little one is so ill!  Stephanie has offered up some excellent advice.  

I am not going to argue that the top celiac specialists do not approve of stool testing for celiac disease (and I know the lab is accredited but that is meanlingless here).

Open Original Shared Link

But, it sounds like your daughter maybe getting glutened accidentally.  Maybe this is the time for you to ask for celiac testing (blood test) to help rule out gluten as the culprit.  

Open Original Shared Link

Here's some information (gov. study) about zonulin (intestinal gate keeper discovered by Dr. Fansano a leading celiac disease researcher).  It specifically talks about celiac disease and T1D.

Open Original Shared Link

Please continue to be a great health advocate.  My heart goes out to you!

Hugs!

 

 

[Aehrhart]

We have a family friend who is a naturopathic doctor in California. She's well versed in the literature relating to celiac and while I know there isn't a gold standard for showing food sensitivities, I also know this research is really in its infancy. We did the testing on our own after talking with our ND friend as a means to get clues as to what caused the leaky gut and autoimmune condition (t1d) post diagnosis. Now ffwd a few months, and we are dealing with GI and a Sibo diagnosis. 

She's at home with me, so I know with certainty she isn't getting glutened by accident. We are looking into getting her signed up for pre k next year, but that's another source of stress. 

Her GI Doctor talked to me about Zonulin at her last appointment. I read a little about it. I appreciate your links; I will definitely read those!

I guess I'm still wondering if there's any celiac patients or parents whose kids have also had a Sibo diagnosis? It seems like I can't find a lot of info on Sibo in small children, but it might be under diagnosed or misdiagnosed? Our daughter did have the lactulose breath test to confirm Sibo (not glucose due to t1d). 

Its just difficult with her being so young. I really appreciate your replies. I guess I'll start an intake and outtake food log to help solve the puzzle. I like that idea. 

[cyclinglady]

Dumb question?  Does she consume dairy (milk, cheese, yogurt), etc.?   Here's another one....fermented foods were not for me when I was still recovering from celiac disease (even though they are healthy for most).  Same goes for nuts.  Just too hard to digest.  

What are you feeding her now?  I ask because while recovering, I could only eat stewed meats, poultry, fish, veggies and fruits.  Anything raw was too hard on my gut.  

I am throwing out random ideas (when I should be putting dinner on the table!)  To be three and so sick!  

 

 

[Aehrhart]

No more dairy. That's the first thing the ND said to stop when she heard she was diagnosed t1d. In hindsight, I wish I had never given her dairy. ? 

Her diet is pretty simple. We really only eat meat, fruit, veggies, and nuts. She rarely eats processed foods unless it's (for example) gluten free tortilla chips or coconut milk yogurt. Luckily, she's always eaten really healthy, so the only modification to her diet in the past year has been the elimination of dairy. 

I know going gluten free won't relieve symptoms if a patient has Sibo. It's just very tricky to treat. 

I would hate to cut out nuts from her diet. She loves them and eats them everyday for breakfast. I haven't noticed her having trouble right after eating them, but she does have fatty stools, so maybe I could talk with her GI about the nuts at the next appointment. Her GI Doctor did say to stop the fermented foods for awhile, so she hasn't had those in a few months too. 

It really is heart breaking. My husband and I just want to get her back on track..especially before she goes to school in the fall! 

Thank you!