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

Postive Biopsy Negative Bloodtest

JessieFree

Recommended Posts

JessieFree Apprentice
JessieFree
Posted

My blood test was negative the biopsy was positive I've been gluten-free for 2 weeks I thought i was feeling better but then out of no where the bloating and cramps started all over again (the gas never went way, but leg cramps have stopped). I can't think of anything I could have had with gluten I'm starting to think it must be something else my GI wants me to go gluten-free for 3 months before he will rule this out and do more tests. I don't have D just C sometimes no certain food seems to trigger my symptoms it just comes and goes. Does this sound like celiac, what about IBS? I'm so confused!

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

Celiac.com Sponsor (A8-M):


dally099 Contributor
dally099
Posted

hi there, negative blood work is really common, but a positive biopsy means you have celiac, no and if or buts about it!! make sure that none of your vitamins or medication you are taking have gluten, not to mention your food and beverages, and cross contamination is a huge factor, so you need your own toaster and bakeware. also sometimes you can have other food intolerances, i myself have soy allergy and have to use lactaid for dairy. this could be due to damage in your intestines. i know there are lots of people on this site that can help you.

JessieFree Apprentice
JessieFree
Posted
  • Author

Thanks for your input I just talked to my GI now he says to go off the gluten-free diet because the bloodwork was negative even though the biopsy was positive. This isn't what he said before but I guess he changed his mind since I'm not improving now he wants me to stay off the dairy and try another medication. I'm fed up and ready to look for another doctor

hi there, negative blood work is really common, but a positive biopsy means you have celiac, no and if or buts about it!! make sure that none of your vitamins or medication you are taking have gluten, not to mention your food and beverages, and cross contamination is a huge factor, so you need your own toaster and bakeware. also sometimes you can have other food intolerances, i myself have soy allergy and have to use lactaid for dairy. this could be due to damage in your intestines. i know there are lots of people on this site that can help you.
Michi8 Contributor
Michi8
Posted
Thanks for your input I just talked to my GI now he says to go off the gluten-free diet because the bloodwork was negative even though the biopsy was positive. This isn't what he said before but I guess he changed his mind since I'm not improving now he wants me to stay off the dairy and try another medication. I'm fed up and ready to look for another doctor

With a positive biopsy you are celiac. You must be 100% gluten free. Eliminating dairy may be helpful as well, as you heal you may find that you're able to eventually tolerate dairy again. You may also be sensitive to other foods too. May be worth keeping a food diary to help figure it out.

Having you done any reading on celiac? You may want to check out "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green. It's a very informative book with current info. :)

Michelle

Nancym Enthusiast
Nancym
Posted

Whoa! Find a new doctor, yours is untrained or misinformed. It's fairly frequent to have negative blood, postitive endoscopy, especially (30%) in people without total villious atrophy.

2kids4me Contributor
2kids4me
Posted

My daughter had inconclusive blood test but positve biopsy. GI said definite celiac, even explained that is why he did the biopsy - because she was symptomatic. The biopsy was diagnostic.

As for symptoms, the intestine takes months to heal...and good suggestion re: dairy - it can be diffcult to digest in many celiacs.

Both my children are celiac and they both had "remission" followed by symptoms for the first 3 months - GI even forewarned us about that and said: as the intestine heals, the body readjusts and is absorbing different. Plus all the "loose enzymes" that were absorbed through the leaky gut have to be eliminated from the body. We were told to be patient and that it could take 2 - 6 months.

Think of it this way: when you get a road rash on your knee from landing on gravel - it feels bad initially, then not so bad, and then as the new tender skin has replaced the damaged skin.....its sensitive to touch and more easily damaged until it heals totally. The intestine is no different -it is layers of epithelial cells regenerating and takes time to be "normal".

The symptoms you are experiencing doesnt mean you are not celiac.... the biopsy says you are!

They may be related to dairy or simply the early stages of a healing gut. Your small intestine is several feet long - thats a lot of regeneration. :blink:

Hope this helps. 2 weeks is just barely time for the villi to have started regenerating - damaged intestine has trouble with lots of foods of any source, even too much watermelon can do it. In other words, even totally gluten free - you will get GI symptoms in the early part of the diet. Plus your body is adjusting to a different variety of foods on top of healing.

Archived

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

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


  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748
    Valerie Ensor
    Newest Member
    Valerie Ensor
    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

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.