Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Blood Test Results Within Normal Ranges

dbuhl79

Recommended Posts

dbuhl79 Contributor
dbuhl79
Posted

So I've gotten the infamous blood test results back. "All within normal range, everyone, nothing even inflamed" You don't have Celiac Disease. That's great right?

Explain to me why I am now on the verge of tears and completely breaking down?!?!

Nobody wants this diagnosis. I will take this and being told I can never have gluten again over being in pain every single day. Running to the bathroom so many times my co-workers and family think I am insane. Losing weight unhealthily. Feeling exhasuted, nasueated and unable to consume ANYTHING. I even missed half of work yesterday.

The kicker here is the GI doctor didnt even schedule a follow-up appointment to search for ANY thing else that could be wrong. Not even to stick me with the official IBS label. :angry:

So what do I do now? Go gluten-free? Send in samples to EnteroLab? So frustrated. :( I just don't want to see another doctor.

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

If your doctor's not going to test you for anything else you have nothing to lose.

richard

pixiegirl Enthusiast
pixiegirl
Posted

I can relate to your story, mine is the same, exactly. I was told 5 weeks ago that I'm fine with a touch of IBS. BS for sure!

I have been Gluten free for 5 weeks and I stopped the bathroom dashes completely, I feel so much better. Just yesterday I sent in the EnteroLab stuff so I'll see what comes back there. But in my book I just feel so much better now that I'm gluten-free. Its been a huge change.

Its hard to give all gluten products up and it would be awful to do if you didn't have to but if you go gluten-free and feel a lot better, then I think that tells you something really important.

Keep in mind doctors don't know everything, they simply help us with our health decisions.

Susan

dbuhl79 Contributor
dbuhl79
Posted
  • Author

Susan & Richard,

Thanks. You're right, nothing to lose. I Had just gotten off the phone with the doctors office when I posted that message, so I was exasperated to say the least. I've had other health issues that I've been tossed around with at the same hospital and I think this is the last straw! :)

I've d etermined to go Gluten Free. I did it for a week and felt better, even glutend myself once with some rice cakes that weren't exactly gluten-free. Felt immediate symptoms. Its got to mean something! :)

Susan its nice to hear you've had such positive results. Let me know how Entero Lab turns out. I can't get there website to load today!

All in all, I know I can go gluten free w/o a pat on my back from the doctor to say "Go ahead'. But theres some part of me that would of really liked that affirmation that I'm not nuts! :) You guys are that confirmation for me!

Thanks so much.. This board is wonderful.

cdevane Rookie
cdevane
Posted

I am right there with the rest of you. Got my blood tests back on Friday and all my doctor's assistant said is that it was "negative for a wheat allergy". Considering that isn't even what I was tested for, I thought it was amusing, especially since I can't even get my GI to return my calls.

Bottom line is I did the gluten free diet as a last resort because I was so deperate to resolve my "IBS" that I have dealt with most of my life. After only three weeks, I feel about a 70% improvement in my IBS symptons, and marked improvement with my headaches, anxiety, and PMS symptoms.

It would be nice to be validated, so I too am going to try the Entero testing as well as the York. It may cost a little money, but if I am feeling better, I don't care!!!

FreyaUSA Contributor
FreyaUSA
Posted

This is definitely the problem with the US testing/diagnosis of celiac disease. Here, either you have celiac disease or you are FINE. Isn't this like telling a smoker, "Hey, you don't have lung cancer, why give up smoking?" Just because gluten causes your body to react in extremely negative ways, just because you feel awful 90-100% of the time, is that a good reason to give it up? According to so many doctors, no. Why? Because it is "too hard." <_< Or, other variations on that theme.

According to one of my kids' pediatricians, the only way to definitively determine if you have a problem with gluten is to go off it. If you have a positive reaction to a gluten-free diet, try something with gluten in it. If you react badly to this, you KNOW you're gluten intolerant or sensitive! Her stance is, if something you're eating adversely effects you, it is obviously doing something to you that is not good and why eat something that makes you feel miserable? (Now, the other pediatrician at the office gave me the "too difficult" lecture. HAH! He didn't even want to run the blood tests. :angry:) I'm with the good pediatrician on this issue. :P

Also remember that celiac disease, DH and gluten sensitivity/intolerance is an area that is being studied as we sit (run to the bathroom, moan in pain, scratch... :blink:) Not everything is known about it yet. How would you feel if, because of the difficulty of following a gluten-free diet you decide not to (as per your gi's advice even though your body tells you this stuff is not good for you) and, 20 or so years from now are incapacitated by a condition that has become linked to gluten sensitivity?

Hmm, I think I have an opinion on this. :lol:

Guest imsohungry
Guest imsohungry
Posted

I just want to give you a big ol' hug! :)

Let me tell you something. I have been through heck forward and backward in my short life. Everyday scientists are coming out with "new genes" found linked to various disorders. I was told that I had IBS until some genious dr. decided to test ANA, white blood cell count, etc....and found out I was all out-of-whack. When we started searching for answers 15 years ago, doctors told me that I was a hypochondriac. :(:angry: You know what??? It shows their ignorance. Years later, with the correct blood work and doctors, it was discovered that I have MULTIPLE auto-immune disorders, and the "spells" that I had as a child were actually SEIZURES! Somebody finally got wise enough to do a MRI and PET scan and it turns out that I have a scar on three lobes of my brain and irregular blood metabolism too! :blink: For how many years was I a juvinile hypochondriac?....until I found a couple of good doctors.

My point is, believe in yourself! Only you know how YOU feel. And if you are feeling better gluten-free, good for you! B) Find yourself a doctor who is not content "settling" for what other doctors have already proved to be true...we would never have any new advances in medicine if some doctors weren't out there looking for alternate explanations and identifiers for people's physical problems.

I hope you stay feeling better and better! Much hugs and blessings. -Julie ;)

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

Celiac.com Sponsor (A8-M):


lilliexx Contributor
lilliexx
Posted

hi

i posted something in one of your other threads too. i am sorry you are having to go through this. my recomendation is that you get another doctor, and keep looking until you find a good one.

i had a terrible experience with a lousy doctor once too. I was crying in her office because i had been having stomach problems for so long and didnt know why, so guess what? she disagnosed me with depression :angry: HA i went running out of her office and never went back.

i will also tell you, that giving up gluten can not hurt you, but it may be another food intolerence or some other problem, so i really feel you should look into other food intlorences and find another doctor so you can get to the root of the problem. giving up gluten may help becaus when your stomach is messed up its harder to digest wheat, dairy etc, but there may be another underlying problem too.

i did have a postive test for gluten, but i am still having problems sometimes, so i am still searching for other things that could be causing problems. ( corn is one thing that i recently discovered causes me problems for me.)

anyway i will quit rambling now, but i wish you the best of luck.

take care

lillie

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.