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

Positive Blood Test, Negative Biopsy

jlynn

By jlynn
in Coping with Celiac Disease

Recommended Posts

jlynn Rookie
jlynn
Posted

Hi everyone,

I was recently told that I had celiac and to start a gluten free diet. I was gluten free for two weeks, and then had a biopsy which was negative for Celiac Sprue. Could the two weeks of gluten free food make my biopsy negative? The doc said he thinks I don't have celiac but to stay gluten free for 6 months and then add wheat. Does anyone have a take on this? Thanks.

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

That sounds like excellent advice. That will give you time to analyze a gluten-free diet and know if you feel better. And a challenge in 6 months will probably make it very clear if gluten is causing you problems.

jhun Rookie
jhun
Posted

same story with me but i was gluten-free for one month before biopsy. biopsy turned out negative for celiac but found gastritis and peptic duodenitis caused by h pylori, felt really good after the 1 week antibiotic course. doctor ordered me back on gluten but i decided to stay gluten-free even though i know that i can eat gluten without any problem i mean symptoms, its the long term damage im afraid of.

jlynn Rookie
jlynn
Posted
  • Author
same story with me but i was gluten-free for one month before biopsy. biopsy turned out negative for celiac but found gastritis and peptic duodenitis caused by h pylori, felt really good after the 1 week antibiotic course. doctor ordered me back on gluten but i decided to stay gluten-free even though i know that i can eat gluten without any problem i mean symptoms, its the long term damage im afraid of.

I don't understand. So you believe that you do not have celiac? does the doc think that also? What long term effects are you afraid of if you do not have celiac disease. Does anything happen when you eat gluten? Thanks for your input. Jennifer

jhun Rookie
jhun
Posted
I don't understand. So you believe that you do not have celiac? does the doc think that also? What long term effects are you afraid of if you do not have celiac disease. Does anything happen when you eat gluten? Thanks for your input. Jennifer

See, after getting diagnosed through bloodwork i tried an elimination diet and gluten challenge i got hurt most with soy but i dont react with gluten at all. most of the people in this board says that if youre blood work is positive then you have it, so to be on the safe side and avoid the long term effects i prefer to stay gluten free although like what ive mentioned earlier i can eat gluten without any symptom flare up but who knows what its causing my intestines. most of the posters here also say that a negative biopsy doesnt mean a thing if you have a positive bloodwork.

pooter Newbie
pooter
Posted

yep, negative biopsy means nothing if blood work is positive. The Dr. I work for says that dietary response is the best way to tell if you have a problem with gluten. He usually recommends one week completely off gluten, then have a huge gluten meal and watch for symptoms. So based on that advice I would say that two weeks off gluten would affect biopsy results.

JennyC Enthusiast
JennyC
Posted

That is exactly why I plan to refuse to let my son be biopsied. He had tTG levels three times the normal max for his age, and he pediatrician told me to start the gluten-free diet right away. I did before knowing about the possibility of further testing. After three very successful weeks I am not giving him back his gluten goodies only to take them away again. Why put my three year old through a biopsy when there is large possibility that it will come back negative? I have seen fantastic results since putting him on a gluten-free diet. There's no going back now.

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

Celiac.com Sponsor (A8-M):


L.A. Contributor
L.A.
Posted

I too had a positive blood test and a negative biopsy--but biopsy was done after going gluten free for 6 months. The number from my initial blood test were 59. The blood test was redone after a year and my number was 23 and then last year the number was 7. Doc says normal range is in the 20's.

jhun Rookie
jhun
Posted

jenny, in your son's case it's pretty obvious and conclusive that your son is a celiac. there is really no point in doing a biopsy. in my case i insisted on the biopsy because after a month in the gluten-free diet my symptoms are not improving. the biopsy was negative for celiac but revealed h pylori that was treated with antibiotics and made all of my gastro symptoms disappear. now, it is just the blood work that has tied me to celiacs which is really confusing sometimes im getting tempted to stay out of the diet but i just keep on thinking about my health's future.

NoGluGirl Contributor
NoGluGirl
Posted
Hi everyone,

I was recently told that I had celiac and to start a gluten free diet. I was gluten free for two weeks, and then had a biopsy which was negative for Celiac Sprue. Could the two weeks of gluten free food make my biopsy negative? The doc said he thinks I don't have celiac but to stay gluten free for 6 months and then add wheat. Does anyone have a take on this? Thanks.

Dear jlynn,

I had negative blood tests several years ago, and a negative biopsy. However, the doctor I am with now diagnosed me as Celiac. I began recovering in a few days of being on the gluten free diet. I had a team of doctors working on me before, and I do not even think they knew what villi was or what to look for. You do not get violently ill from a microscoping amount of gluten unless you are Celiac. My doctor told me she has had a handful of patients have this occur with negative tests who were Celiac. The doctors up at IU even missed my gallbladder, despite the supervising doctor of the group being the head of Gastroenterology and Hepatology! The gallbladder is part of the hepatobialary system! :angry:

Sincerely,

NoGluGirl

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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
×
×
  • 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.