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Well The Dr Called...


Quincypp

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Quincypp Rookie

I am so mad at myself. I was in a meeting with my boss and my phone rang - of course it was the dr calling me back. She said the blood tests came back negative for celiac - however the best way to diagnose is biopsy doing an edoscopy (which i had done last year but not checked for celiac - i don't htink they did any biopsy of the intestine. Also I haven't really been digesting a lot of gluten since on the atkins diet. She was surprised the iron infusion she gave me didn't give me a "big boost" of energy. I said yeah i feel a little better but its not like I suddenly feel great. I asked if i would be getting any more iron and she said no the dosage she gave me will bump up my hemaglobin to 140 and thats enough - i was at 128. However I thought the point of the iron was to get my iron and iron stores up which were both at 5. Anyway the reason I'm mad is cause I didn't ask her my questions - guess I was caught off guard with calling while i was with my boss. I also didn't say much to her - i was like a deer in the headlights! So i go back on March 1 for my follow up. She wants a copy of my last endoscope and a celiac disease copy of the actual gallium scan that came up positive for inflammation in my marrow - not the summary but the actual test so it can have a second opinion. I do see my family dr in January i will talk to him too - he also said if i wasn't consuming gluten it could come back negative. I wanted to ask for a copy of the blood results but forgot - so will call back to get a copy faxed to me - so I can see what she tested for. i did ask how long for the folate to kick in (I am on supplements) she said that would take a month - so i might just have the double whamny of o low iron and low folate causing the fatigue. Mind you - still don't know why i have such low values since my diet is very rich in both. I also wanted to ask to test my other vitamin levels to see if any other levels are low. Guess just more waiting.


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tarnalberry Community Regular

Call back with your questions!

Celiac Mindwarp Community Regular

Yes, call back :)

mommida Enthusiast

Yes. You need to call back and get more tests done.

It is possible you have Celiac disease. (You may not have consumed enough gluten before testing.) You could opt for genetic testing (not a perfect test either, you can have the 2% known miss rate, human error rate for blood test is 30%, so don't fully believe the 99% accurate statistic) It is possible you have Celiac and another related disorder.

Severe anemia will land you in the hospital pretty quick. I don't think you should put off any further testing for causes. (i.e. Pernicious anemia)

tom Contributor

...

...human error rate for blood test is 30%, so don't fully believe the 99% accurate statistic

...

Human error rate?? :huh:

I'm not sure what this is supposed to mean & can't think of any way it makes sense. Is it saying that lab techs are inept, spilling/contaminating samples or losing vials?

I just keep saying "human error rate" in my head, thinking maybe some way to interpret it will percolate forward.

30% is literally an unbelievable number & I'm extremely curious about the details & where it came from, if you don't mind.

peeptoad Apprentice

The false-negative rate (maybe that's what mommida means) is about 25-30% and that's documented in a lot of medical literature...it's not really human error from what I understand, but just a diagnostic error for that particular lab test.

Darkfire Ann Newbie

From what I understand Celiac and maybe even NCGI makes it harder for us to absorb iron. I am a red meat eating fool with a load of vitamin C to help it go down and still have to take iron pills to keep from cramping so bad I wake up screaming with leg cramps. Plus I load on Black Strap Molasses too.


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Celiac Mindwarp Community Regular

I am waiting on the results of my genetic testing and I'd be really grateful if anyone has references on those figures.

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    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. 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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
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