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Stricter Protcol Than Just gluten-free?

juliev

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juliev Newbie
juliev
Posted

Hi,

 

My 10-year-old is presumed Celiac based on 4 blood draws (first three test results 18 months ago were over 100; most recent test was 96).  Although we thought we'd been very careful to keep him gluten free, his most recent test result should have been much lower if we had.  I've heard that there is a stricter protocol for someone who is not responding to a gluten-free diet, but I don't know what that stricter protocol is.  My guess is that it involves a gluten-free, casein-free diet.  Is anyone familiar with this, and if so, would you be willing to share information with me?

 

Thanks so much.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Are you following all the stuff we have to do to avoid cross contamination? He needs his own toaster, condiments, you can't use stuff like a colander that is used to drain wheat pasta for his gluten-free pasta, supplements and script meds need to be checked to be sure they are gluten free etc. It isn't just that food must be gluten free we also have to be very careful about how it is prepared.

Have you read the Newbie thread at the top of the Coping section? If not you should as it will have a lot of valuable info for you.

I don't have time before work for a more complete answer but I am sure others will be on to give some good recommendations.

cyclinglady Grand Master
cyclinglady
Posted

This is an older post from Jebby. She is a Ped Medical doctor who also has celiac disease. She wrote about Dr. Fansano's diet (and other celiac disease experts) and how it deals with super sensitive or possible refractory celiac disease.

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

I hope this helps!

kareng Grand Master
kareng
Posted

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

 

 

Sometimes referred to as "the Fasano Diet"

 

 

Looks like Cycles & I were posting at the same time!   :D

cyclinglady Grand Master
cyclinglady
Posted

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

 

 

Sometimes referred to as "the Fasano Diet"

 

 

Looks like Cycles & I were posting at the same time!   :D

I was going to say two things:

"Great minds think alike!"

And....

When I first saw the posting, I was heading out the door and in a hurry and thought that Karen will respond. I was right!

kareng Grand Master
kareng
Posted

Newbie thread

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

RMJ Mentor
RMJ
Posted

And just in case you want to see the original Fasano paper describing the diet:

Open Original Shared Link

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juliev Newbie
juliev
Posted
  • Author

Thank you, all!  This was just the information I was hoping to find.  While we knew to get him his own oven (just so happens that we're moving into a brand-new house in a few weeks, so problem solved there!), no one said anything about new colander (though I had wondered about that) or other items. 

 

I will definitely look into the Fasano diet! 

 

Eloise, best wishes in your new journey!  I'm sure that changing your eating habits as a teen is incredibly difficult, but good for you for taking control of your health.  I really appreciate your recommendation to check his vitamins for gluten, too!  Great suggestion.

 

Thank you all again!  I feel very encouraged that we'll be able to better eliminate gluten and to help him feel his best.

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      Son's legs shaking

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      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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      High TTG-IgG and Normal TTG-IgA

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      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
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