Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Blood Test Normal


mark t

Recommended Posts

mark t Newbie

Well, my self diagnosis was incorrect. They show I do not have an allergy to wheat.(baring the possibility of a false negative). Doing the biopsy would make the crash complete, so I think I will wait. And just stay with the diet and see if it makes a differance I wanted to say how friendly and supportive you guys are. I am very grateful for that.

Thanks,

Mark


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast
Well, my self diagnosis was incorrect.  They show I do not have an allergy to wheat.(baring the possibility of a false negative).  Doing the biopsy would make the crash complete, so I think I will wait. And just stay with the diet and see if it makes a differance I wanted to say how friendly and supportive you guys are.  I am very grateful for that.

Thanks,

Mark

<{POST_SNAPBACK}>

Celiac is not an allergy so celiac would not pick up on allergy testing.

Nevadan Contributor

Mark,

Do you know specifically what tests you just had done?

As Kaiti just said, gluten sensitivity isn't an allergy.

George

mark t Newbie

Perhaps my choice of words might be wrong. I asked my endo for the blood test for celiac, It was my understanding that the blood test showed any lack of nutrients in the blood that would indicate a gluten intolerance. None showed. Perhaps allergy is the wrong word, but no matter, the blood test was negative, so the result is the same.

Mark

KaitiUSA Enthusiast
Perhaps my choice of words might be wrong.  I asked my endo for the blood test for celiac,  It was my understanding that the blood test showed any lack of nutrients in the blood that would indicate a gluten intolerance. None showed.  Perhaps allergy is the wrong word, but no matter, the blood test was negative, so the result is the same.

Mark

<{POST_SNAPBACK}>

any lack of nutrients would indicate a gluten problem? I mean it can be a symptom but if it is in beginning stages where you don't have that problem yet they may show up fine. You really need to have a celiac panel done in order to get proper results for celiac.

Rachel--24 Collaborator

I'm confused. :unsure:

Were they checking for vitamin deficiencies or Celiac Disease? What tests did they run? If they ran the right tests they'd be looking for antibodies to gluten not lack of nutrients due to gluten.

mark t Newbie

I don't know. I asked for blood work to check my blood for celiac disease. My endo, who is at the top of her game, I trust her to make the intial check. She is familar with the connection of celiac and type 1 diabetesShe gave me the option of going to digestive physician. I was only reading on the internet that the blood test checks for nutrients lacking in the blood to check for gluten intolerance. It didn't say anything about vitamin diffeciency. I assume that is what was done, but does it really matter? If not eating any gluten makes me feel better, I will do that, I can then judge how I feel as to whether it is beneficial or pointless.

After 36 years of diabetes, I learrned a valuable lesson about eating, if the fuel is making you sick eat something else. Eating wheat or not is irrelevant. Being as healthy as one can possibly be is all that matters, if you can be more healthy by what you eat, it is such a simple choice. I will be gluten free if needed. I trust my body to tell me.

Mark


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Nevadan Contributor
I don't know.  I asked for blood work to check my blood for celiac disease.  My endo, who is at the top of her game, I trust her to make the intial check.  to tell me.

Mark

<{POST_SNAPBACK}>

I hate to say it, but it doesn't take much reading on this forum to find that dr's are generally pretty clueless when it comes to gluten sensitivity testing. You should get a copy of the lab work that was done so you can see for yourself what tests were done - I wouldn't trust that to any dr. Check some of Kaiti's previous posts for a list of the full celiac disease panel of tests and compare it to what you just had done.

I like your attitude re going gluten-free. It's only an inconvenience and if it yields better health it's worth it.

Good luck.

George

blondehart Newbie

I diagnosed myself as gluten intolerant, but couldn't get into a specialist until December. My Dr. feels that I might be celiac disease, but as soon as I realized what was making me sick, I stopped eating gluten. I feel as if I am between a rock & a hard place. I can't get an accurate diagnoses w/out eating gluten, & I am afraid to eat it. Help..... :o

Nevadan Contributor
I diagnosed myself as gluten intolerant, but couldn't get into a specialist until December.  My Dr. feels that I might be celiac disease, but as soon as I realized what was making me sick, I stopped eating gluten. I feel as if I am between a rock & a hard place. I can't get an accurate diagnoses w/out eating gluten, & I am afraid to eat it.  Help..... :o

<{POST_SNAPBACK}>

First, I assume you self-diagnosed by dietary challenge: went gluten-free and saw some symptoms improve and maybe tried gluten again and saw the symptoms worsen. Dietary challenge (your self-diagnosis) is a valid, and perhaps the best, form of diagnosis. But if you still think you need a "professional" dx, you might want to look into Enterolab. They specialize in gluten sensitive testing using a stool sample which you provide from the privacy of your home. They claim their testing does not require the reintroduction of gluten if you have only been gluten-free for 2-3 months. They will also do a DNA test which can indicate if you are likely to have celiac disease, non-celiac disease gluten sensitivity, or neither. The DNA test doesn't prove you have anything, but it indicates if you are at risk. Be forewarned that Enterolab's testing is somewhat controversial in the med profession, mainly because the testing procedures have not been published for peer review, a standard part of the scientific method.

With that said, I self-diagnosed with diet challenges, then did the Enterolab testing about 6 wks later. Enterolab results confirmed what I already knew from my self testing plus their DNA analysis found I have two HLA-DQ1 genes which mean I'm not likely to develop villi damage common to celiac disease; however, I am gluten sensitive and subject to numerous other problems, many of them neurological (a few of which I have mild cases of), if I were to return to eating gluten.

The latest thinking is that celiac disease (villi damage) is only one presentation of gluten sensitivity ("the tip of the iceberg") so even if your celiac disease tests were to come out negative, you might still be suffering from gluten sensitivity. I recommend reading "Dangerous Grains" by Braly & Hoggan if you want to learn more about non-celiac disease gluten sensitivity.

Good luck!

George

LLCoolJD Newbie

I had an antibody blood test when my symptoms were in their early stages. It came back negative. Over time, the symptoms worsened, and the gluten-free diet did the trick. I'm under the impression that the blood test can give false negatives.

Going on a gluten free diet for 2-4 weeks should tell you better than any antibody test whether you have a gluten intolerance.

blondehart Newbie

thank you...this is good advice & I feel better already.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    2. - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    3. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    4. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

    michelinagiggles
    Newest Member
    michelinagiggles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...