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Is this all in MY head??


curiousgirl

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curiousgirl Contributor

I was diagnosed with celiac last Wednesday, 5/26. I've been doing the best I can on my own to eliminate gluten from my diet...haven't begun to take a look at my cosmetics and body care products. I have an appointment this Thursday with a new gastro doc...but until then.....

These are my test results:

tTG Ab,IgA

>100

Unit: U/mL

Reference Range:

NEGATIVE: <5

EQUIVOCAL: 5-8

POSITIVE: >8


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WheatChef Apprentice

Holy cow, unless I'm reading that terribly incorrectly your results are greater than 100 AU!

That couldn't be further from being "all in your head" it sounds more like it's all over your body! The cleansing process can be very confusing and it takes most people multiple tries to finally get totally gluten free at home.

In the meantime, my special drink for gastric issues concerns lots of bacteria. I personally prefer coconut kefir (some of the most delicious stuff in the world) but you could just take some probiotics (or mix the two!). Probiotics have been shown to aid in the recovery of celiac disease, while damaging your intestines with gluten you end up severely disturbing the natural colonies of bacteria that keep your guts running properly.

ravenwoodglass Mentor

It is not all in your head. It takes a while to recover from the damage, it didn't occur overnight and won't go away instantly either.

Be sure you check all meds and supplements you take, eat a whole food unprocessed diet and learn about CC issues. There is a bit of learning to this gluten free thing but you will get it. Your in a great place to learn what you need to do, like having a seperate toaster for your gluten free items, replacing scratched and wooden cooking utensils, not baking with gluten flours for others etc.

PrincessHungry Newbie

When I went gluten free, I experienced the most painful heart burn ever. For a week or two I ate rolaids and tums like they were candy. I had never experienced real heart burn before that. It was super intense but eventually went away. I think the severe diet change caused my body to freak out a bit.

I understand the "Is it all in my head" problem. Trust yourself. You know what's going on even if it seems crazy.

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      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
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      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
      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
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      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?
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