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Diagnosis of NGCS using Salerno method. Need help to set the test up

Mixy

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Mixy Rookie
Mixy
Posted

HI all,

Hope you are all having a  great Xmas!

I think I have NGCS, at least according to the symptoms after doing an elimination diet. I have been gluten-free for a year now... My symptoms are neurological: brain fog, focus loss...

Being self-diagnosed I still have problems to be 100% gluten-free when I am invited to a friend/family house, or going out for dinner... and then i am wondering about symptoms and remorse feelings... so I would like to get tested...

Testing for NCGS is still an open research area, but this year a group of experts, including the most known researchers in the area have put together a process to diagnose it, which they hope will be adopted internationally. Basically, the patient goes through a gluten challenge organised by 3 different cycles. The key thing is that in one or 2 of the cycles the diet is gluten-free, but in the remaining cycles the diet is a non-gluten-free placebo. Of course, the patient does not know what cycles are placebo and has to write down the perceived symptons

Link to the paper: Open Original Shared Link 

So, I would like to do this at home and I am wonder what the best way would be to, with the help of my partner, to prepare 3 weeks of food, organised by 3 cycles, that i can not distinguish what food is gluten-free or not. One idea is drinking a daily smoothie with many ingredients to hide the taste of the Gluten element... for example using gluten-free bread and normal one... 

Do you have any ideas of how to conduct this self diagnosis experiment? What foods could I use to do the A B testing without knowing which one contains gluten?

Thanks a lot!!!

 

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Mixy Rookie
Mixy
Posted
  • Author

I posted 3 times this new thread by mistake... sorry...

I have tried to delete the other 2...

cyclinglady Grand Master
cyclinglady
Posted

I am formally diagnosed as a celiac, but my husband is not.  He went gluten free (before any testing) per the poor advice of his doctor and my allergist 14 years ago.  He struggled the first year and made mistakes, but it was obvious that he had an issue with gluten.  He NEVER cheats knowingly!  

If after a year of being gluten free and your symptoms are not resolving, gluten may not be an issue for you.  But your posting does not tell us everything.  You might be getting gluten into your diet on a regular basis.  That happens a lot for newbies as there is a steep learning curve.  Read our Newbie 101 section. 

Did  you ever get tested for celiac disease?  It might be worth doing a gluten challenge and getting a medical doctor to do a celiac blood panel.  You would have to consume gluten for 8 to 12 weeks daily.  There is no testing for NCGI (Non-celiac gluten intolerance).  

Your research experiment?  Sounds difficult.  I did read the study you were referring to.  I hope you got an A grade in all your science class and science fair projects!  ?  I am not trying to make fun of you.  But when I was diagnosed, anemia was my symptom and I have a genetic anemia on top of that.  Eating gluten at that time did not make me feel bad.  I had no clue and was shocked that I had celiac disease.  Of course, celiac disease can evolve and I get all the traditional or more common gut issues when I get glutened.  I can tell you that it takes me three months now to recover from a bad glutening (as documented by my doctor and follow-up blood tests).  Remember, celiac disease is an autoimmune disorder that is triggered by gluten.  Once my body is triggered by gluten it is hard to stop that response.  We are lucky that we at least know what can trigger a flare-up.  Someone with Ms, lupus or R. arthritis never knows.

I hope this helps!

Mixy Rookie
Mixy
Posted
  • Author

Hi cyclinglady,

Thanks a lot for your reply

I definitely feel better since I am gluten-free, but i don't follow it 100% of the time (i'd say 90-95%) It is only when things are less within my control that i eat gluten...

I d love to be diagnosed, which is why i d like to do that self-diagnose experiment. I agree is a bit too technical, but i don't mind that. for me the issue is how to get placebo or gluten in a daily smoothie. An 8 week gluten challenge seems too painful

You said something that resonated with me... that your symptom was anemia... I got some generic blood tests done last week, and the result was that I have an Iron Deficiency Anemia. I could not understand how that was possible, considering that i eat lots of red meat and iron containing foods. I did the usual internet search and I found out that that could also be a symptom of Celiac desease... so there could be a connection there... but could the Iron Deficiency Anemia be the symptom of Celiac disease even when I am not eating any gluten?

Thanks

 

 

 

 

 

 

cyclinglady Grand Master
cyclinglady
Posted

Yes!  If you have celiac disease, a 90 to 95% gluten-free diet could easily cause an iron-deficency because your small intestine can never heal and absorb nutrients.    Did your doctor check your iron stores (ferritin) too?  A celiac must be 100% gluten free to achieve healing.  Celiacs do get glutened (risk diminishes as you learn the diet) but the goal is 100% gluten-free for life!  

Remember other things can cause anemia too.  

Mixy Rookie
Mixy
Posted
  • Author

Yes, my doctor checked for the Iron, and TS, which were very low, and also for Serum Ferritin, which was normal

I am probably reading into this a bit too much, but after reading this infogram about celiac disease symptoms: Open Original Shared Link

I see that my iron levels are low, but also my calcium levels are slightly low, and my vitD levels were very low last year before i started supplementing to raise the levels up

Thanks! 

RMJ Mentor
RMJ
Posted

I think you could taste the difference if you do it with foods.  Instead, you could get empty gelatin capsules, fill some with a gluten free flour, and fill the others with actual gluten.  They might look a bit different, but your partner could hand them to you each day when your eyes were closed.  With pure gluten you wouldn't have to take too many each day.

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Mixy Rookie
Mixy
Posted
  • Author

Thanks KMJ

That idea makes a lot of sense, but I checked the article and they say that " gelatin capsules are discouraged and the vehicle should be "cooked, homogeneously distributed gluten..." 

They ask for 8g of gluten/day, which they claim is a normal gluten consumption for a gluten eater in the western world

Thanks a lot for the idea and your help

deb-rn Contributor
deb-rn
Posted

My husband and I are both Gluten Intolerant.  I was the only 1 tested and it was negative.  I declined further testing as I understand there are several tests and the best ones are sent away to a special lab... that wasn't going to happen!  I didn't need further confirmation after going gluten-free for a few months.  When we go to people's house to eat, I explain  WHAT  to cook and what  NOT  to add.  You can always have baked chicken, veggies and a baked potato.... simple.  If there is a group, we  ALWAYS  just bring our own food and tell the host that we will be doing that.  It is  NEVER  OK to compromise your health to make someone  else feel comfortable!!  That bite of gluten can affect your gut for several months!  NOT  worth it!  Constantly challenging your system keeps it in a state of inflammation.  When I have company, they can't tell it's all gluten free!  It's just good, wholesome food!  You could switch the whole family and they wouldn't even know!  Get back on track and heal your mind, body and soul!  You'll be happier for it!

Best of Luck!
Debbie

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