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Testing After Gluten Free?

WhenDee

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WhenDee Rookie
WhenDee
Posted

I'm sure this has been asked before, but apparently my searching skills aren't very good.

We have to have my daughter tested, because she may have silent celiac's (nearly silent), and I was thinking of also being officially tested. I can't do a challenge because I would get so sick, but it would also be nice to have an official diagnosis after so many years of being accused of hypochondria. Even my husband, who has taken me to the hospital so many times and has seen all my problems go away is only 90 percent convinced it wasn't all mental

I've been gluten free for several months. Would an antibodies test turn up negative for me? Would I have to challenge for an accurate result?

I suppose if my daughter turns up positive after I noticed she has similar problems to what I had when I was very young (digestive problems not started yet), it would be pretty obvious, right?

Just wondering if it would be worth it, or would show a false negative after all this time gluten free....

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ravenwoodglass Mentor
ravenwoodglass
Posted

You would be a false negative if you have been off gluten. You could do a gluten challenge eating at least 3 to 4 slices of bread for 3 months and then be tested but you could still have a false negative. Be aware that the false negative rate for children is even higher than for adults so do a strict trial for your child after all testing is done if you suspect celiac.

Mack the Knife Explorer
Mack the Knife
Posted

If you don't have to pay for the testing and you have only been gluten free for a few months - then you should probably get tested.

I have been strictly gluten free for 18 months and I'm still testing positive. My GI was not worried for the first year as he says it's not uncommon for it to take a while for some people's antibodies to return to normal. He's not so happy with me now and is sending me off for another biopsy.

So I do think it is worth getting yourself tested just in case. A negative result won't tell you anything but there is still a chance you could test positive.

WhenDee Rookie
WhenDee
Posted
  • Author

Hmmmm.... these are interesting replies. I have a "yay" and a "nay".

It's very frustrating to be somewhere where the medical care is so lacking, that is for sure. Biopsy is out here, because it isn't uncommon for people to just die from such ordinary procedures here.

My daughter needs to be tested, so I may go ahead & do it anyway, just to see. If she is positive, that will be a pretty big indicator for me.

Edited because: I replied wrong thing to wrong thread, sorry.

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
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      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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