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Complete Disarray

Exposure relief/symptom reduction? Atrantil/VSL3

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So, I'm 19 month into my gluten free life.. my sensitivity has increased to below 20ppm so it's like starting over with shopping/learning.

Google lead me to a probiotic VSL3 (also recommended by my nutritionist)...  one celiac reports half the recovery time and level of symptoms from an exposure to gluten.  It's hard for me to say myself as I'm rapidly learning to avoid 5ppm-20ppm items.  BRM flour, etc.  Adams onion powder! (really?)

Today, I visited a new GI, Kenneth Brown who has partnered to create a natural supplement and they suggest I start taking that instead of VSL3.  They claim to have much better results with their supplement...  of course.. It appears to be fairly new, and google turned up very little except one patient of SIBO (small intestine bacterial overgrowth) that claims it's the only thing that helps and another that said it didn't do anything.

Anybody try either one and have any comments?   I'll probably try it, but again, likely too many variables in my life right now to know how much it will help.

Any others that have helped?

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I just stick to whole natural foods and do not take any supplements.  I would worry about a GI who is promoting products.  Plus, probiotics might be good for colitis or IBS (large intestine), but very little bacteria is in the small intestine naturally.  Too much bacteria in the small intestine and you can SIBO (small intestine bacterial overgrowth) which is usually treated with antibiotics which kill even good bacteria found in probiotics.   Th VLS3 site does not mention that is is certified gluten free nor does it recommend it for celiac disease (just diseases of the large intestine).    It is the small intestine that is damaged when you have celiac disease.  

I am not a doctor, but I think you need to do some more research.  

When was the last time you had celiac antibody testing (follow-up testing) to see if you are actually gluten-free diet compliant?  

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 I had a test about 4 months ago and my Iga (?) was 5.5   I've been constantly, at least weekly, cross contaminated pretty much since the start.  I completely stopped eating out about 6 months ago, but some foods labeled gluten free have become still too high for me.  I also have forgotten to wash (continuously) my hands before touching some of my food which has also gotten me a few times.  My kitchen isn't yet 100% gluten free and our little grand kids are gluten monsters.

"Are VSL#3 and VSL#3-DS Gluten Free? Yes, VSL#3 is gluten free as defined by the proposed FDA definition of a gluten free food "  From their FAQ.   I've not had a reaction too it, so it's likely below 10 as well.

I've also trusted too many postings on the internet, which has got me a few times as well.

Yes, my 'bells' we definitely going off from their 'own' supplements, but this is supposed to be one of the best celiac doctors around Dallas and they said they had really good results with it, so I thought I would check here.

Whole natural foods only may be in my near future, but if I can find enough safe foods I'd rather not have to.  Also, my symptoms are not nearly as severe like I read of others on here.

I've read a study about anti-biotics and celiac reactions which seem to be related, which is why I was encouraged by those types of treatments.  Good warning on the possible too much probiotics..  I may try the supplement as I don't think it could hurt... 

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I am not sure that I am understanding you.  Are you saying that your antibodies are down in the normal range but that you are still experiencing celiac symptoms?  Or were they down during your last follow-up test and you were glutened afterwards?  I guess I am not understanding the timeline.  

I think you need to really review your current lifestyle and make changes that will prevent any future glutenings.  Is your family supportive and are taking measures to protect you?  

Taking supplements (vitamins, minerals, probiotics) could be a good thing, but what is the point if you are constantly getting glutened?  There is no supplement that has been proven scientifically by celiac researchers to speed healing or prevent a glutening.  Maybe in the future, but right now.....NO!  

Whole natural gluten-free foods prepared by yourself is the best and will promote faster healing while you are ill.  I think you have this backwards and this could be one of the reasons you are still struggling.   When you are better, eating out and eating more processed gluten-free foods may become an option.  Remember, that you can react to ingredients found in certified gluten free foods that may mimic gluten reactions.  Anything you eat can hurt to digest when your antibodies are high because your gut is in the process of being damaged.   

I hope you figure it out!  

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 Found my actual results... Iga was <1, Immuglobulin A 52, IGG was 5.

 Yes, I'm probably going the wrong way about my eating... I've been slowly eliminating things that I find cause issues... Probably better to go 'clean' and add them in one at a time.  I'm at the point now, where I know < 20ppm still causes 2 of my symptoms to persist.  This has been over the last month or so.  They both will start to get better.. then I'll get another CC.. so I know it can be done.

 Generally my wife is mostly put out with the whole thing, sort of supportive, sometimes. :(  When I point out something or ask a question she gets mad. But I've seen her make mistakes... just like I do.  I keep saying I just want to feel better, but she still takes it personally...  frustrating, but trying to work through it. 

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I am sorry that you are not getting the support you need at home.  That's hard. :(  I understand about family.  My own extended family had a hard time accepting my diagnosis.  I was anemic and looked just fine.  It wasn't until I fractured my back doing NOTHING (osteoporosis as a result of celiac disease) that they took notice (that and a huge meltdown on my part!)  

But...the good news is that you are here on celiac.com  where you can get support and great tips!  

There is a huge learning curve to the gluten-free diet.  And it takes time to change a lifetime of behaviors.  Give your wife time and support.  If she's willing, direct her to good educational sites.   I like Jane Anderson's articles on about.com.  She has some good advice.  (Thank you Jane for pointing out the gluten-free chicken wraps and brownies available at Costa's coffee shops while we were traveling in England, it was our go-to food in a pinch!)  Help your wife in the kitchen (if you already do not).  She might be feeling the burden of preparing so many gluten-free meals.  We like to BBQ and freeze meals in advance.  That way we can quickly defrost chili or cooked grilled chicken to add to a salad for a quick meal.  Easy to eat BLT's (we skip the toast and use lettuce wraps).  I'll splurge and treat the family to frozen fries too!  My 17 cu/ft freezer I keep in the garage has been a lifesaver! 

I think you get the point! :)

Good idea about eating clean and adding foods back in.  Most of us when newly diagnosed have issues with other foods.  Some are lactose intolerant, others are intolerant to soy, corn, etc.  I found that I could not tolerate Xanthan Gum which is added to gluten-free processed breads and cookies.  Does not bother hubby, but get me every time! 

Wash your hands!  I think I have become almost OCD with all the hand washing, but it has paid off.  

Enjoy your day.  I'm off to the high school for a lame sports physical for my kid.  She was just at her regular doctor, so she's okay.  Just need to get the physical form signed off.  Then we have to hunker down and study for finals.  Not me.  I just need to provide the snacks, meals and emotional support.  :lol:

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  Thanks for the advice and support. :D    Lettuce wraps... great idea, hadn't thought of that.

  I do most of the cooking and kitchen cleaning, so I'm pretty careful.. but she cooks for the grand kids when they are are here..  I even clean up most of the kids dishes.. separate sponge, etc, etc.

Good luck on the exams.

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