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

TheFuzz

Recommended Posts

TheFuzz Apprentice
TheFuzz
Posted

I had a "weakly positive" blood test in December, and a negative biopsy in January. Before the biopsy, I went 3 weeks on gluten, and I felt absolutely awful. I have been off gluten for a month, and still feel bloated, some diarrhea, and abdominal discomfort. The GI doc said the biopsy is the gold standard, so I probably don't have celiac, given the weak blood test result. I'm not sure what test it was. He suggests maybe I have lactose intolerance or fructose intolerance as well as gluten intolerance. He said to go off milk etc for a couple weeks and see if it helps. I'm at a loss now, as I don't want to keep guessing what the problem is after 5 months of discomfort! I also have had, for a good 10 years a rash on my chest that I suspect maybe DH.

So, can I safely rule out Celiac disease, and it is just an intolerance, combined with possible other in tolerances? Can I have other tests? He just wanted me to try the lactose thing and see how it goes.

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

Celiac.com Sponsor (A8-M):


BabsV Enthusiast
BabsV
Posted

I had a "weakly positive" blood test in December, and a negative biopsy in January. Before the biopsy, I went 3 weeks on gluten, and I felt absolutely awful. I have been off gluten for a month, and still feel bloated, some diarrhea, and abdominal discomfort. The GI doc said the biopsy is the gold standard, so I probably don't have celiac, given the weak blood test result. I'm not sure what test it was. He suggests maybe I have lactose intolerance or fructose intolerance as well as gluten intolerance. He said to go off milk etc for a couple weeks and see if it helps. I'm at a loss now, as I don't want to keep guessing what the problem is after 5 months of discomfort! I also have had, for a good 10 years a rash on my chest that I suspect maybe DH.

So, can I safely rule out Celiac disease, and it is just an intolerance, combined with possible other in tolerances? Can I have other tests? He just wanted me to try the lactose thing and see how it goes.

Were you off gluten before the blood test? If so, for how long? That could impact the results. How many biopsies did they take? Don't they now say 8-11 samples are best yet a lot of doctors take only 3-5?

The diet doesn't always work immediately...I'm 6 months in and only in the last 2-3 weeks have I seen a decrease in my pain issues (on some days.) Also, have you cleaned out your kitchen, scrubbed all the pans, replaced your toaster and strainers, checked any medicines you take regularly for gluten, etc? There is gluten hidden EVERYWHERE.

Try giving up dairy AND gluten and see if it helps. When I went gluten free I cut out dairy also and it made a big difference.

Not sure about other tests. There are many more experienced and knowledgeable people on the forums who can probably address that.

As far as test results go, I had a negative biopsy in February 2011 (was being scoped for something else) but ended up getting progressively sicker and sicker...the doctors blamed it all on GERD. Finally, after a drastic weight loss and experiencing debilitating abdominal pain one doctor suggested the Celiac blood panel as a test of exclusion (this was when they were convinced it was all in my head -- they even sent me to a psychiatrist!) which came back positive to everyone's surprise. Was scoped again in August 2011 and yep, there was damage and positive biopsy results.

Lisa Mentor
Lisa
Posted

I had a "weakly positive" blood test in December, and a negative biopsy in January. Before the biopsy, I went 3 weeks on gluten, and I felt absolutely awful. I have been off gluten for a month, and still feel bloated, some diarrhea, and abdominal discomfort. The GI doc said the biopsy is the gold standard, so I probably don't have celiac, given the weak blood test result. I'm not sure what test it was. He suggests maybe I have lactose intolerance or fructose intolerance as well as gluten intolerance. He said to go off milk etc for a couple weeks and see if it helps. I'm at a loss now, as I don't want to keep guessing what the problem is after 5 months of discomfort! I also have had, for a good 10 years a rash on my chest that I suspect maybe DH.

So, can I safely rule out Celiac disease, and it is just an intolerance, combined with possible other in tolerances? Can I have other tests? He just wanted me to try the lactose thing and see how it goes.

How many samples were taken to biopsy? After your weak positive, it might not have been enough time to create significant damage, or affected areas might have been missed.

My suggestion would be to eliminate dairy products for three or four weeks, continue to eat gluten free...and I'd be willing to bet that you will see a vast improvement. :)

Positive blood work and positive dietary response is a diagnosis. And the current trend is to have multiple indicators in a diagnosis

TheFuzz Apprentice
TheFuzz
Posted
  • Author

I had been on gluten full time before the blood test, as there was no suspicion of celiac beforehand, so I wasn't gluten free. I went off gluten after I got the positive blood test for 2 weeks, then found out about the biopsy, so back on gluten for 3 weeks. I'm not sure how many biopsy samples were taken, the GI doc basically didn't want to discuss it as he was being pretty certain it wasn't celiac. He was the one who did the scope, so maybe he is arrogant or something? Dunno, I only met him briefly.

I have cleaned the kitchen pretty well, new toaster, utensils etc. I haven't eaten out in a month, though in the first 2 weeks I had some chicken broth that I don't think was gluten free. Everything else should be safe food wise. Oh I have also had GERD for a long time, about a year and half ago started pantaloc.

faithforlife Apprentice
faithforlife
Posted

Yes my son had a positive blood test and only inflamed intestine but had so much improvement going gluten-free we'd never go back.

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      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?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      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...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      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....
    5. 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!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • 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!
×
×
  • 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.