sibo from fructose or gluten

[kkgirl]

I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?

[cyclinglady]

First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.   

If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.

 If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO.

There is a test to check for SIBO.  Has this been done?  

Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?  

 

[Jmg]

1 hour ago, cyclinglady said:

I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?  

 

 As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  Open Original Shared Link gives a good summation. 

Quote

Given the limited literature on the topic, it should not come as a surprise that there are still numerous questions about NCGS that should be addressed. Is NCGS permanent or transitory? Is the threshold of sensitivity the same for everybody, or change from subject to subject and in the same subject over time? 

Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.

[cyclinglady]

@kkgirl can you get copies of your old lab results?  You can get them from your doctor (and you should keep copies).  Do your parents have them?  Can you check to see if you actually had the entire celiac panel?   I ask because I test positive to only ONE on the panel (DGP IGA), yet I had a intestinal damage.  Did you have biopsies six years ago or just a screening celiac blood test?  

[kkgirl]

Sorry just getting back to u.. I actually did not have a biopsy 6 yrs  ago they just found out what was making me sick and they said I was intolerant.. I'm still fighting with the doctors actually had a endoscopy today (still on gluten free) but it showed that my small intestine has decreased folds in duodenum. So they took a biopsy because they said supissus for celiac.... after that procedure I called the gi doctor back because she called while I was in procedure my fructose test I just did last Sunday came back positive.... while I was on the phone I asked if fructose malabsorption can cause the decending folds and she said no. But celiac Can and with u being 6yrs on gluten-free it may not show anything wrong with the vili. But I'm going to just go ahead and say celiac... not sure if that's a good idea because it not a accurate diagnose technically 

[cyclinglady]

Well, if your GI is willing to give you a celiac disease diagnosis, I would go for it.  Obviously, you know that gluten makes you sick (no one in their right mind would stick to a gluten-free diet otherwise ?).  A diagnosis is good for your records.  Get the diagnosis in written form (Ihave a letter from my GI stating that I must be gluten-free because of celiac disease) and keep/maintain all test results, notes, etc.  They may come in handy someday!  

 You can develop intolerances at anytime.  Are you sure you had the flu last winter?  Maybe it was a glutening?  I ask because I developed wierd rashes, hives, vomiting, passing out -- all sorts of issues when I was glutened last summer (verified by antibodies testing, source unknown).   

Hey, I could have sworn that my niece had celiac disease.  Turns out she has Crohn's (pill cam found it).  She did not have any typical Crohn's symptoms either.  Not saying you have Crohn's, but you can have several things going on.  

I hope you feel better soon.