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


Cstrong

Recommended Posts

Cstrong Newbie

Hi, I had a positive blood test IGA 44.8 and IGG 184.5, but my biopsy came back today as negative. During the procedure I had told the doctor I felt better since I hadn't been eating wheat, etc. and he said "You don't know that diet, there is no way you haven't eaten any wheat, it is in so many things...."

Anyway, he called today and said it came back negative and that I can eat wheat :unsure: I feel so much better since I haven't been eating wheat. My symptoms were severe stomach pain (on a scale of 1-10, the pain was a 10+), and now I only get little twinges of pain now and then.

Any advice on whether or not I should try wheat again? Of course my head says no, but my heart says "some pasta sure would be good right about now"!


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



Celiac.com Sponsor (A8-M):



GEF Explorer

Hello & welcome, Cstrong!

Would it give you comfort to know that you're not alone in your plight? Through a lot of reading, I have come to the conclusion that positive blood tests in themselves are reason enough to at least attempt a total gluten-elimination diet. Your body is producing antibodies against gliadin it's not only your intestines that can show damage. I needed a lot of convincing, believe me... but, I've read so much about how not having full-blown celiac now, doesn't mean you won't develop it later.

You'll receive a lot of support here... also, it's a benefit to read back through previous posts when you have a chance.

Good luck!

Gretchen

lovegrov Collaborator

Well if you like 10+ stomach pain, then, sure, go ahead and eat wheat.

Your blood tests alone put the chances of you haivng celiac disease at more than 95 percent. Add in the improvement in symptoms and you're near 100 percent.

richard

Happycat Rookie

Hi Cstrong,

This is an uphill battle all the way isn't it? If you feel better off wheat then don't give up. I think you should find another doctor who will listen. I called Dr. Peter Green's office and he agreed to look at my son's slides from his 7/26 biopsy along with his bloodwork. He is IgA deficient and 115 IgG. He has been suffering for 4 years. It is so sad that doctors are not very aware of celiac disease. I have told all the doctors I have taken him to all his symptoms along with his family history and still I was the one to bring up celiac. I do not look at doctors the same anymore.

Good luck and don't give up!

Lisa

tarnalberry Community Regular

Grrr. I really hate it when doctors treat patients like they're stupid. There's no excuse. I say stick with what makes you feel better. You want another test? Have a wheat based sandwich. See how you feel. There's a test if you're not sure already!

terri Contributor

It's funny how doctors are so different. My blood tests were positive and I asked if he was going to do a biopsy. He said only if my symptoms did not go away. He also had told me the true test is how I felt on a gluten free diet as Celiac does not always show up in blood tests or biopsies. And he's an Internist, not even a GI doctor!

So, in my opinion, if your blood tests were positive and your pain went away, why go back to wheat? If it's pasta you want, try some Notta Pasta or Quinoa Pasta they're yummy! And you won't get a tummy ache!!!

Terri

Mballerina Explorer

If your Anitbodies (IgA's) are elevated, even though your biopsy is negative you should go on a gluten free diet as stringently as if you had full blown celiac disease. One cause may be that you are in the beginning stages of celiac disease and may not have sinificant damage yet. The other is that your body is obviously not assimilating wheat and you may simply have a wheat allergy not a gluten, you should have that checked.

Magdalena, ON, canada


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



Celiac.com Sponsor (A8-M):



Guest ~wAvE WeT sAnD~

Terri---

We need more Internists like yours in my area. I'm impressed that I've heard of one knowing what celiac disease is. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,394
    • Most Online (within 30 mins)
      7,748

    Graceland.h
    Newest Member
    Graceland.h
    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
    • Scott Adams
      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
    • Clear2me
      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
      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.