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 Tests

cookiequeen

Recommended Posts

cookiequeen Apprentice
cookiequeen
Posted

Is it possible to have a negative blood test but still have celiac?

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

Celiac.com Sponsor (A8-M):


elye Community Regular
elye
Posted

Oh, yeah. Many of us on here have had "negative" blood panels, and even "negative" biopsies, only to try the gluten-free diet and become well............ :)

cookiequeen Apprentice
cookiequeen
Posted
  • Author

That's what I figured. The Dr (his nurse practitioner, actually <_< ), insisted that my symptoms was just due to poor diet and constipation management. She told me to eat activia daily (which I'm getting sick of), take a stool softener daily, miralax or maalox daily, fiber, and plenty of water. That's been making me feel almost just as bad because now I feel like I'm going to poop my pants all the time :blink: . I was already following a vegetarian diet, exercising, and trying to keep up with my fluids.

I started eating gluten free the day after they drew blood and the bloating started to improve by that weekend. I don't think the nurse thinks that I could have celiac's at all. She said that she would be willing to run more tests if I had steatorrhea. I did have greasy diarrhea for about a week 3 yrs ago. And since then my stomach hasn't been the same. I cut out dairy and increased my fiber intake for months, with no relief. At this point I am so sick of feeling bad all the time.

All I know is that 3 yrs of constipation, bloating, gas, cramping, off-and-on depression, fluid retention, and recurrent stomach distention is not normal at all. I'm 24 for goodness sakes!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Yes! I believe I am a perfect example of that. My blood test was negative but I have had the classic symptoms of Celiac most of my life. Plus, my son has Celiac. My allergist said that people get false negatives all the time. I feel 100% better since going gluten free.

lizard00 Enthusiast
lizard00
Posted
That's what I figured. The Dr (his nurse practitioner, actually <_< ), insisted that my symptoms was just due to poor diet and constipation management. She told me to eat activia daily (which I'm getting sick of), take a stool softener daily, miralax or maalox daily, fiber, and plenty of water. That's been making me feel almost just as bad because now I feel like I'm going to poop my pants all the time :blink: . I was already following a vegetarian diet, exercising, and trying to keep up with my fluids.

First of all, welcome to the board!!!

Second, you need another Dr or nurse practitioner. They're treating the symptoms only, which is sadly very common. Daily stool softeners and laxatives will make your body dependent on them... you think you can't go now, keep that up for a while and you'll never be able to go on your own.

Take some probiotics. They're about 10x better than any yogurt you'll find, without all the added sugar and whoever knows what else. You can find them at any health food store, whole foods, or even in most pharmacies. I use Align, but there are many, many different brands.

I started eating gluten free the day after they drew blood and the bloating started to improve by that weekend. I don't think the nurse thinks that I could have celiac's at all. She said that she would be willing to run more tests if I had steatorrhea. I did have greasy diarrhea for about a week 3 yrs ago. And since then my stomach hasn't been the same. I cut out dairy and increased my fiber intake for months, with no relief. At this point I am so sick of feeling bad all the time.

If you feel better, and continue to improve, you have found your answer. Do you have a family history of Celiac?

Do you have your test results? Post them on here, lots of us have found out things because we insisted on physically seeing our results. If I had never have looked, who knows where I would be. My blood work was negative, too.

All I know is that 3 yrs of constipation, bloating, gas, cramping, off-and-on depression, fluid retention, and recurrent stomach distention is not normal at all. I'm 24 for goodness sakes!

No, it's not. And I hope that you continue to search for the answer. You will find the answer, sometimes it just takes a little longer than we want. B)

Feel free to ask any questions, we are all here to help and most of us have been where you are right now.

Take care!

cookiequeen Apprentice
cookiequeen
Posted
  • Author

Yeah, I think I'll give up the Maalox. Who wants to keep that up :P ?! Yuck! I'll have to get a copy of the test result. It's supposed to be a "comprehensive" test. Should I expect all of the results to be negative or should at least one be positive? I think I'll hunt down another doctor too.

No family history here, that I know of. I'm the only one with GI problems. I'm also the only one with eczema, and my nails have turned weird, and I've had pitting edema in my foot that my normal dr couldn't explain.

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. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir.
    2. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    3. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    5. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,357
    • Most Online (within 30 mins)
      7,748
    Tomo
    Newest Member
    Tomo
    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

    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
×
×
  • 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.