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Gluten For Bloodwork

Clearbelle

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Clearbelle Newbie
Clearbelle
Posted

Hi All,

I am new here. I was just given a prescription for bloodwork to test for celiac disease by my doctor - only for the first time did I see on this board that you should be eating gluten for accurate results - how important is this? I have been gluten free for almost 1 month. I don't want to cause any undue symptoms etc either - but would like a confirmation of my condition for all types of reasons. I also have autoimmune thyroid disease and many of my symptoms don't make sense for GD - but they do for celiac disease -so I would like to know for sure so that I can ensure that I am taking care of myself all around. I don't plan on starting to eat gluten again regardless - but would just like to know. What do you all recommend. Is there a chance that i could still test positive even though I have been gluten free.

Also, how long does it usually take for symptoms to dissapate -while I have had a degree of relief since giving up gluten I do still have many symptoms - does this usually take a while?

Lasty, a rather bizarre question - but I have been having issues with an itchy nipple for over a year now - had a biopsy which showed some form of inflammation - dermitis? Could this be associated with celiac disease?

Thanks, C

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Willow5 Rookie
Willow5
Posted
Hi All,

I am new here. I was just given a prescription for bloodwork to test for celiac disease by my doctor - only for the first time did I see on this board that you should be eating gluten for accurate results - how important is this? I have been gluten free for almost 1 month. I don't want to cause any undue symptoms etc either - but would like a confirmation of my condition for all types of reasons. I also have autoimmune thyroid disease and many of my symptoms don't make sense for GD - but they do for celiac disease -so I would like to know for sure so that I can ensure that I am taking care of myself all around. I don't plan on starting to eat gluten again regardless - but would just like to know. What do you all recommend. Is there a chance that i could still test positive even though I have been gluten free.

Also, how long does it usually take for symptoms to dissapate -while I have had a degree of relief since giving up gluten I do still have many symptoms - does this usually take a while?

Lasty, a rather bizarre question - but I have been having issues with an itchy nipple for over a year now - had a biopsy which showed some form of inflammation - dermitis? Could this be associated with celiac disease?

Thanks, C

I am sure you will read all about how it is inportant to be eating Gluten for the blood work! If you haven't been real strict then you might be ok, I went back on for about a week after a low gluten diet for a couple of weeks, and tests showed inconclusive. (I think) Still there are antibodies which will hang around for months after gluten-free. Anyhow, in regards to your nipples, I have had horible nipple troubles over the years but it has been related to breastfeeding. As long as I am BF I have sore nipples and when I quit they clear up. I have wondered too if there was a connection!

tarnalberry Community Regular
tarnalberry
Posted

A month on a gluten-free diet is pretty likely to skew your results. You should be eating a gluten-free diet (of about 3 slices of bread a day) for about 3 months prior to testing to have reasonable confidence of not getting a false negative, though it's no guarnatee. Recovery of symptoms can take a number of months, once you get every last ounce of gluten out of your life.

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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
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      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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