Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Negantive Celiac Sprue Blood Test
0

10 posts in this topic

Even after my Celiac sprue blood work came back negative my symptoms continued until I totally eliminated all gluten from my diet. Finally 6 months later the nausea, diarrhea,skin lesions, weight loss and fatigue have finally ceased. The depression, anxiety, insomnia and a host of other physical ailments I had as well are gone as well. PROBLEM- I can't find a doctor who believes me! Has anyone else experienced this? Even the slightest amount of gluten starts an "attack"!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Don't worry about a doctor...I spent 7 years trying to convince there was something there...but as long as you feel better, what difference does it make? They don't need to give a prescription for you to eat gluten free...eat gluten-free for yourself, not the doctors!

0

Share this post


Link to post
Share on other sites

I think we just have to accept that some doctors don't know what they are doing.

I never said ALL, I just said SOME. If you feel better when gluten-free, well, eat gluten-free. You probably are a coeliac or gluten intolerant, either way, as long as you feel okay!

1

Share this post


Link to post
Share on other sites

Don't worry about a doctor...I spent 7 years trying to convince there was something there...but as long as you feel better, what difference does it make? They don't need to give a prescription for you to eat gluten free...eat gluten-free for yourself, not the doctors!

I am staying gluten-free for me and for the first time in YEARS feeling better! Thank goodness I found this site and forum to get some support. Thank you all so much! From what I have been reading on here I am sure I have the disease and am pretty sure my blood test was negative because it is advanced. I don't think I need an invasive biopsy to figure that out.

1

Share this post


Link to post
Share on other sites

I think we just have to accept that some doctors don't know what they are doing.

I never said ALL, I just said SOME. If you feel better when gluten-free, well, eat gluten-free. You probably are a coeliac or gluten intolerant, either way, as long as you feel okay!

I am SO MUCH better and grateful I found this site!

0

Share this post


Link to post
Share on other sites




I am staying gluten-free for me and for the first time in YEARS feeling better! Thank goodness I found this site and forum to get some support. Thank you all so much! From what I have been reading on here I am sure I have the disease and am pretty sure my blood test was negative because it is advanced. I don't think I need an invasive biopsy to figure that out.

I didn't know until after the fact I had to be eating gluten (bad doctor) so of course mine came back negative. Oh Well I'm not going back to get retested. I've been gluten free for a year and a half and am feeling awesome and that's all that matters!

0

Share this post


Link to post
Share on other sites

I am SO MUCH better and grateful I found this site!

:D Hurray! So am I, as well!

0

Share this post


Link to post
Share on other sites

Welcome to the site Marini and Meteto! :0

Marini, you are so right. It is best to eat what makes you feel right, regardless of tests or what other people may think of your diet. We are still learning about celiac disease and doctors re just starting to admit that there is such a thing as NCGI (non-celiac gluten intolerance). So lots of things about this condition and the diet are left to us to figure out ourselves. That's why this forum is so useful as we can get info from other celiacs and how their bodies respond to different foods.

And Happy Easter to both of you! :)

0

Share this post


Link to post
Share on other sites

Welcome to the site Marini and Meteto! :0

Marini, you are so right. It is best to eat what makes you feel right, regardless of tests or what other people may think of your diet. We are still learning about celiac disease and doctors re just starting to admit that there is such a thing as NCGI (non-celiac gluten intolerance). So lots of things about this condition and the diet are left to us to figure out ourselves. That's why this forum is so useful as we can get info from other celiacs and how their bodies respond to different foods.

And Happy Easter to both of you! :)

I am figuring out more and more things for myself thanks to this site and the info on the net. Years ago my eyelashes and eyebrows fell out and never grew back, my hair quit growing. Since switching to gluten-free products they have grown back! I can hardly believe it! My hair is past my shoulders for the first time since high school too. I do have lots of scars on my arms and hands from the lesions I had last fall (I wish my doctor would have biopsied them, someone told me she could have, but she never mentioned it) but the constant itching and rash is long gone. THANK YOU Celiac.com!

0

Share this post


Link to post
Share on other sites

That's great Marini! wow, hair growing back in is fantastic. The damage to our intestines can cause us to not absorb nutrients, and that leads to lots of problems. The fat soluble vitamins are the ones they say don't get absorbed well.

Have you checked out the dermatis herpetiformis section of the board? That's the skin rash that people with celiac sometimes get. Some of the people with DH say that they have to avoid iodine in their diet or they get flares of the rash.

Dermatitis Herpetiformis on celiac com

This site has a listing of the fat soluble vitamins and their uses in the body. I don't think this is a complete list of symptoms though.

Fat-Soluble Vitamins on Colorado State University site

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,332
    • Total Posts
      920,432
  • Topics

  • Posts

    • I would like to ask if anyone has eaten puffed rice from Arrowhead Mills.  My daughter, who has celiac, wants to eat it and I am looking for advice.  The only ingredient is rice, but they do not test the product so do not label it gluten free.  I called the company and they say they clean all their equipment between each product, but since they don't test it cannot label it as gluten free.  Would you allow your daughter to eat this product?
    • He might have celiac disease (or just the start of it).  He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it.  He might have other food intolerances (milk, dyes, etc.).  You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.).  Trialing a diet is fine, even a gluten free diet, when you ruled out everything.  But you have that quirky TTG result.  I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation.  An allergist is not a celiac expert nor is primary care doctor.  You should get a referral to a Ped GI.  If she/he suggests a gluten-free diet, then fine.  Because if he improves then, the GI will give you a diagnosis.  By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy.  This case is not clear and that is a bummer.   The cure is the diet.  But he will be going to school and a diagnosis will pave the way for accommodations all the way to college.  And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing.   This is his life and yours.  You must do what is best for your family.  I wish you well and we are here to support you.  I care.  I am mom.  
    • This just published: Highlights   • Kernel-based gluten contamination in oats skews gluten analysis results. • Grinding inadequately disperses gluten to allow a single accurate analysis. • Lognormal distribution of the test results renders a single test unrepresentative.   Abstract Oats are easily contaminated with gluten-rich kernels of wheat, rye and barley. These contaminants are like gluten ‘pills’, shown here to skew gluten analysis results. Using R-Biopharm R5 ELISA, we quantified gluten in gluten-free oatmeal servings from an in-market survey. For samples with a 5–20 ppm reading on a first test, replicate analyses provided results ranging <5 ppm to >160 ppm. This suggests sample grinding may inadequately disperse gluten to allow a single accurate gluten assessment. To ascertain this, and characterize the distribution of 0.25-g gluten test results for kernel contaminated oats, twelve 50 g samples of pure oats, each spiked with a wheat kernel, showed that 0.25 g test results followed log-normal-like distributions. With this, we estimate probabilities of mis-assessment for a ‘single measure/sample’ relative to the <20 ppm regulatory threshold, and derive an equation relating the probability of mis-assessment to sample average gluten content.   The full article can be accessed at Gluten Free Watchdog if are a subscriber.
    • If I may say something right now, the suggestions, advice, and information provided to you in this forum is just that: suggestions, advice, and information.  What has been provided can be used as tools to help figure out what is going on.  Please don't go away disgruntled or too frustrated.  There have been times myself when advice and suggestions was given to me, and I was not sure what to do about all the information.  I had to think and pray on it before I could act on it because my brain was functioning enough to do something about it right away.  It was on survival mode.  Forgive me if I am wrong, but I believe this is where you are at right now.  You are not sure where to go or what to do, so your body is just doing what it can to function day in, day out.  If this assumption is correct, I GET IT!  It is not fun, neither is it easy. Don't give up.  Things will get better.  Take all of this information and go to your primary doctor to see if you both can put your heads together and figure this out.  The answer may not come right away, but be patient.  it could be everything coming at you at once that making your body go into hypersentive mode.  I don't know, because I am not in your situation.  Until you go to the doctor, do what you know to do and God will take care of the rest.  There is something that has kept me sane through this past year: It will be okay because God is in control.  He knows what is happening to you and your future is going to be.  When you have a good day, enjoy those moments.  When you have a bad day, bring back to memory those good days and see if you can do something for another person.  I have found this year that if I focus on someone else through the bad times especially things don't seem as grim. I will be praying for you.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,388
    • Most Online
      1,763

    Newest Member
    m47kx
    Joined