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

Neg Blood Test

woolwhippet

Recommended Posts

woolwhippet Explorer
woolwhippet
Posted

Well, my blood work shows that gluten is supposedly not the cause of my illness (my result was 5 and positive was greater than 20 and apparently the test is 97% accurate). I was SO positive it was gluten because I responded so well to the diet (butt rash cleared up, no brain fog, and NORMAL BMs).

The doctor suggested it may be dairy I am reacting to. She told me she wouldn't rule out gluten 100% yet but to stay dairy free for three weeks and then reintroduce in small amount to see effects.

My own plan is to reintroduce gluten and go dairy free. If I stay healthy while eating gluten then it's dairy. But if I sink back into losing weight and my itchy butt rash comes back then I guess I'll have my answer.

Thanks to all of you for your help. I have so enjoyed reading your posts and have learned a lot from reading this baord.

Lenore

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

Celiac.com Sponsor (A8-M):


Nancym Enthusiast
Nancym
Posted

Well, I think the blood test is about as accurate as reading tea leaves. If you've been around the forum for awhile, you know lots of us have had positive results on the diet and negative results on their various tests.

Your plan sounds good though. Go for it!

Ursa Major Collaborator
Ursa Major
Posted

You may be gluten intolerant without celiac disease (which is one form of gluten intolerance). In that case your blood tests would always be negative, but it is just as serious as celiac disease. From your positive response to the gluten-free diet I believe your doctor is wrong and as ill informed on gluten intolerance as most doctors.

You may be dairy intolerant as well as gluten intolerant. But you really shouldn't ignore your very positive response to the gluten-free diet.

I myself have no idea if I have celiac disease or 'just' a gluten intolerance. It doesn't matter, the treatment is the same: The gluten-free diet.

The people who don't have villi damage usually have other problems, like skin outbreaks, mental reactions (like depression and brain fog) and nerve damage (neuralgias, bone and muscle pain and many more). Which can become irreversible if you don't stay gluten-free, even if your blood work and biopsies are negative.

GFJan Newbie
GFJan
Posted

My gastroenterologist is a huge gluten-free diet fan. He's been to seminars all over and has seen so many cases where everything seems normal including blood tests, biopsies, etc and yet the patient responded to the diet. He feels that's the only reliable "test" and believes that someday the science will catch up with what they're observing.

Jan

Lisa Mentor
Lisa
Posted
My gastroenterologist is a huge gluten-free diet fan. He's been to seminars all over and has seen so many cases where everything seems normal including blood tests, biopsies, etc and yet the patient responded to the diet. He feels that's the only reliable "test" and believes that someday the science will catch up with what they're observing.

Jan

Wow! How lucky you are to have such a wise doctor. :)

hathor Contributor
hathor
Posted

Did you eliminate gluten prior to the blood test? If so, the test wouldn't be accurate.

Also, you need a battery of blood tests, not just one. You only mention one result. Search through celiac.com and the message board; I'm sure all the different tests are explained. I would have to look the stuff up myself to explain it in more depth to you because I had the Enterolab stool testing (theoretically more sensitive [at least according to Enterolab :lol: ], plus I didn't have to involve [i.e., convince] a doctor or add gluten back into my diet).

I wonder about the accuracy figure. Is this measuring how many positives are really positive, or how many negatives are really negative? (And if so, what is the test for being "really" positive or negative?) I've certainly heard lots of folks here mention false negatives -- as well as problems with doctors not realizing that someone must be consuming appreciable amounts of gluten for an appreciate amount of time prior to testing nor that several different tests need to be run on the blood.

The best test is how you reacted to the diet. Of course, your plan to reintroduce gluten may confirm things for you in any event.

But won't you be confounding things if you introduce one thing and take out another? What if you negatively react to both but in different ways? If I were you, I would take out dairy and still keep gluten out. See if you feel better. Once you resolve whether dairy impacts you, you can still challenge with gluten if you wish.

woolwhippet Explorer
woolwhippet
Posted
  • Author
Well, I think the blood test is about as accurate as reading tea leaves.

HA! That made me laugh!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

"But won't you be confounding things if you introduce one thing and take out another? What if you negatively react to both but in different ways? If I were you, I would take out dairy and still keep gluten out. See if you feel better. Once you resolve whether dairy impacts you, you can still challenge with gluten if you wish"

This was exactly what I was going to suggest. A word of caution on the challenge, when you challenge with gluten it may be up to five days before you react gut wise. DO NOT chow down on copious amounts of burgers and pizza, you might really regret it. If you do challenge use something like cream of wheat or triscuts or shredded wheat at least 3 times a day.

woolwhippet Explorer
woolwhippet
Posted
  • Author

Thanks--this is very good advice esp about how to introduce gluten. I honestly was ready to do the pizza thing.

I notice that many here that many people are gluten free regardless of test results. I find this very inspiring and reassuring.

Lenore

dally099 Contributor
dally099
Posted
Well, my blood work shows that gluten is supposedly not the cause of my illness (my result was 5 and positive was greater than 20 and apparently the test is 97% accurate). I was SO positive it was gluten because I responded so well to the diet (butt rash cleared up, no brain fog, and NORMAL BMs).

The doctor suggested it may be dairy I am reacting to. She told me she wouldn't rule out gluten 100% yet but to stay dairy free for three weeks and then reintroduce in small amount to see effects.

My own plan is to reintroduce gluten and go dairy free. If I stay healthy while eating gluten then it's dairy. But if I sink back into losing weight and my itchy butt rash comes back then I guess I'll have my answer.

Thanks to all of you for your help. I have so enjoyed reading your posts and have learned a lot from reading this baord.

Lenore

hi lenore, well if you have been on the diet for any period of time no kidding your blood test was negative, but if youve had positive response to the diet and your rash is going away i would take that as a sign, my blood test was negative but i had been on the diet for 2 weeks, after 2 months of being on the diet my bm's were normal i gained the weight back, the dark circles went away etc etc, so i did a challenge for a week, i knew my answere pretty quick, it is gluten. you can get testing from enterolab as well, thats what im doing. good luck!!

ravenwoodglass Mentor
ravenwoodglass
Posted
I notice that many here that many people are gluten free regardless of test results. I find this very inspiring and reassuring.

Lenore

It is also in so many ways so sad. The testing for celiac and gluten intolerance is so inadaquate in terms of false negatives. Most doctors don't even suggest the diet they just give us pills, or worse tell us it is 'all in our heads'. So many lives cut short and so many desperate people that just want to be well. And so, so many ignorant doctors. I hope you find the answers you need.

debmidge Rising Star
debmidge
Posted

Lactose intolerance tip: keep in mind that like gluten, lactose is in a lot of foods as a single ingredient. So check labels for this as well. It can be found in (besides obviously in diary foods) margarines in amounts higher than what is naturally found in pure butter, found in frozen foods, in candies, in grocery items, buttered popcorn, prescriptions and over the counter medicines, wheat breads, baked goods from bakery, white sauces, commerciallly made mashed potatoes - potato salad, cole slaw, & other creamy salads, quick mix stuff.....

So be careful about sources of lactose too if you are going to eliminate it as a test. It's not serious like gluten, as it leaves your body 1 to 72 hours after consumption. I've had lactose unknowlingly at noon lunch and found myself in ladies room having D an hour later. And Lactaid pills work "pot-shot." With the pills, I won't have sudden D but for the next day or so I'll have a lot of gas working through my intestines.

hathor Contributor
hathor
Posted

woolwhippet, is it lactose or casein you are going to eliminate? Casein is in lots of things as well, including supposedly "veggy" cheeses. You have to really check ingredient lists.

woolwhippet Explorer
woolwhippet
Posted
  • Author

Thanks again. I am struggling with the dairy thing--you are right, it's eveywhere!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    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.