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GillyBowler Newbie
GillyBowler
Posted

Hi. Just found this site. I was diagnosed 2years ago with coeliac disease in the form of gluten ataxia. Despite being gluten free

I still have neuropathy pains in hands and feet, alsomtinnatus.Wondering if going dairy free will have any effect.

would love some advice.

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Ennis-TX Grand Master
Ennis-TX
Posted

Might, I have lactose intolerance and a whey allergy on top of celiac disease. I had this issues way before my celiac dia. BTW I have the nerve issues also 3 years later I still have damage to feeling of touch in my hands and feet -_-. At least I do not have the pains, or full random motor loss anymore lol, the brain fog to the point of berserk confusion was the worst, oh the stories from that time. I was scary.

Back to the topic, go ahead and try dropping the dairy for a month and you can bring it back in later then make your own decision, there are plenty of dairy free options, I make my own cheese sauces, My own diary free sugar free ice cream, and drink various nut and seed milks on rotation, along with unsweetened coconut yogurt. Found some cream cheese extracts, and cheese flavoring extracts in the last year and fell in love with making my own dairy free recipes while enjoying the flavors from my childhood >.> just recently found coconut whipped cream lol. Anyway If you need any suggested on brands or alternatives I have a HUGE list, heck been lactose intolerant for over 10 years.

The villi which are damaged by celiac produce the enzymes to break down lactose, so when they are damaged they can cause issues with diary digestion, Dairy in some people does also have mental and neurological issues but this is normally in people within the autism spectrum. Studies on this are iffy with ones showing both sides. I have autism and the gluten ataxia so I can not say really, But I do notice I have a bit more of a mood swing issue with I accidentally consume dairy. NOW this could be from my gut hurting me and bloat making me miserable, my autism flaring up from what ever reasons related to dairy, or it could be the ataxia. Since I have all the issues with some studies relating back to dairy I can never narrow it down and just avoid dairy and consider it poison to my body lol. SO I am not the one to really rely on in relation to information on this just my off opinion. Perhaps some others can give you some advice. NOTE there are some dairy lovers here (brain washed by the American dairy association studies and commercials >.> )  that swear by the stuff, and others like me who hate it with a passion so much we claim the other side of the rally (I admit I am very biased against dairy) so expect likewise biased opinions and make your own judgement.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

Also I do not know if listed there yet but I have been doing more experimenting with a few other brands of diary free cheeses a like daiya, lisannatti, and Julian Bakery. -_- My stomach is not agreeing with the daiya in large amounts, but it has the most cheesy texture cooked/melted, raw/cold it is nasty and dry, Lisannatti shreds are great raw cold or melted.  the blocks...mush too much but work in cooking again odd issues in large amounts with my stomach. and the julian bakery seems to the most tolerable and can be ordered online but has the worst texture. Really just prefer making my own cheese sauces and adjusting the fats, seasoning, and vinegar/lemon juice to get the desired kick and bite of a nice cheese.

Victoria1234 Experienced
Victoria1234
Posted

There's certainly nothing wrong with going off dairy. I had to for at least a year. It's hard at first but you get used to it! I wish you good luck.

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    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
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      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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