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

Negative Biopsy

high maintenance

Recommended Posts

high maintenance Newbie
high maintenance
Posted

I had biopsies done last year and they came out negative, but my bloodwork was positive. I've been on a gluten free diet for 8 months now, and the only difference is that my anemia is gone. The doctor's I saw said it was up to me whether to go gluten free or not. I'm wondering whether in fact I am truly gluten intolerant. Does anyone else know anything about how accurate bloodwork is? I would hate to continue to be on this diet if I really dont need to. Any ideas?

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

Celiac.com Sponsor (A8-M):


pmrowley Newbie
pmrowley
Posted

The most important question is, do you feel markedly better on the diet? Having your anemia disappear while gluten-free is significant. But otherwise, it sounds like you might have had some other issue. I don't know the accuracy of the blood tests, unfortunately. They didn't have them when I was diagnosed. :)

-Patrick

KaitiUSA Enthusiast
KaitiUSA
Posted

Well there are a # of reasons your biopsy could have come back negative. If you did not have damage there yet or sporadic damage they could have missed it. If you had positive blood work I would go with that. What celiac tests were you tested for?Some are very specific for celiac. I was only diagnosed with blood tests because of the test numbers that came back, I had a gene test that said I had the DQ2 gene and it was pretty obvious and the doctor had no doubt.

The anemia going away should be a sign that the gluten free diet is working because anemia can come with celiac. Have you been feeling better on the diet?

high maintenance Newbie
high maintenance
Posted
  • Author

There are days when I think I feel better, but some days I feel just the way I did before going gluten-free. I seem to be itchy allot, which may mean I have other allergies going on, but I can't seem to attribute it to any certain food (soy, corn, etc). I am still fatigued and still have not been able to gain too much weight - was underweight before. And I'm not sure if the anemia is gone because of going gluten-free or because I was put on birth control pills to help control my heavy periods and that has helped tremendously - maybe that was why I was anemic? Who knows for sure! I have been very diligent about being gluten-free and at times it is so hard - being the only person in a house of 5 that is gluten-free is no easy task. I am forever washing my hands after touching wheat products <_< I guess I should ask to have that gene test done, that way I can be more certain.

Lesliean Apprentice
Lesliean
Posted

I am astounded that your doctor would have positive blood work and say you might eat gluten. That is like having the EKG and heart tests that show blockage and saying that because the patient has not had a heart attack yet they might not have heart disease.

The biopsy can miss the damage or the intestines might not be very damaged-yet. It is a hard diet to get used to and even one crumb will give you all those symptoms you keep having. Flour in medicines, in the jam jar, on the counters, in soup, BBQ sauce, lip stick... It is so easy to eat gluten inadvertently and then think you are having symptoms of something else. I hear problems with dairy and soy a lot too, but always in addition to gluten.

Of course it could be something different for you, but my periods are regular for the first time in 10 years because of the GFD. If you have the gene test please know that they still miss at least 3 % of Celiacs that have other gluten sensitivity genes (DQ1 and 3 that are included by Enterolab). It is your life and you get to live it any way you want but if you chose to go gluten-free the people at this board would love to help you with a wealth of knowledge and support.

Good luck and good health,

Leslie

Archived

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

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


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.