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 Tests But gluten-free Diet Works

ginnym

Recommended Posts

ginnym Newbie
ginnym
Posted

I'm hoping someone on here can help me work my way through the contradiction of my symptoms and the coeliac tests that I've had. Apologies in advance for the long post :)

In January this year I started with severe, inflammatory-type pain in my upper abdomen, with some nausea. It seemed to be worse after eating and consequently my food intake dropped significantly. Initially ulcers etc were suspected and I was referred to a general surgeon. I had an endoscopy within a month of symptoms starting. This showed "subtle signs which may be consistent with coeliac" and a blood test was recommended. By the time I had the blood test I was eating practically nothing (I've now lost a fifth of my body weight). The blood tests came back negative for coeliac. Because everything was taking so long and I was in so much pain, my GP suggested a trial gluten-free diet. This brought about a spectacular improvement. A recent test consumption of HP sauce, produced a new bout of pain within hours which lasted for a couple of days so I'm back gluten-free and almost without pain.

I saw the hospital last week and updated them on my diet trials. They were totally uninterested and told me categorically that it was impossible to get a false negative result on the blood test, even though I'd eaten very little food in the preceding month. They also said that if the blood test was negative for coeliac and there was no villous atrophy on the biopsy, then gluten couldn't be the culprit. They're now pursuing some wacky idea about blood supply to my abdomen. I'm confused because I've read a lot of information that says you can have false negatives on blood test, and also that it is possible to be gluten intolerant without it necessarily being coeliac. My experience on the gluten-free diet would seem to support my feeling that gluten is responsible. I subsequently asked for a copy of my biopsy which says that my lymphocyte levels were at the "upper range of normal", although the actual count isn't on the report. It also says that chronic inflammatory cells are towards the upper range but that there was "no convincing villous atrophy". My research suggests that raised lymphocytes are now considered one of the lower grades of coeliac, even without villous atrophy.

I'd be really grateful if anyone could answer a few questions:

Is it possible that I do have coeliac even with the supposedly negative tests?

Is it possible to have false negatives on the blood tests?

Is it possible to have a gluten intolerance without coeliac damage?

Are raised lymphocytes an accepted grade of coeliac and if so, what is the count threshold?

I'm debating asking to be referred away from the surgical team to a medical team who may know more about coeliac and I'm also considering complaining about the information I was given last week but I need to be confident that I'm on the right lines before I go making waves.

Sorry for the long story - I'm desperate for anwers!

Many thanks

Ginny

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

Is it possible that I do have coeliac even with the supposedly negative tests?

Yes....its possible. The tests arent 100% reliable (especially the biopsy).

Is it possible to have false negatives on the blood tests?

Yes.....it is certainly possible...especially if one is IgA deficient....or not consuming enough gluten in the diet.

Is it possible to have a gluten intolerance without coeliac damage?

Yes...many people have gluten intolerance without actually having Celiac Disease. Gluten intolerance can also be caused by other conditions which may lead to increased permeability.

Are raised lymphocytes an accepted grade of coeliac and if so, what is the count threshold?

Increased numbers of intra-epithelial lymphocytes are found not only in coeliac disease but also in other medical conditions.

Since you have had a very positive response to the gluten-free diet you may very well have Celiac Disease. If you are looking for more evidence you can have genetic testing to determine whether or not you carry the main Celiac genes.

After having been on the diet for some time you could also repeat the endoscopy to see if the lymphocytes have gone down.

kayavara Rookie
kayavara
Posted

I had a negative blood test and a negative endoscopy.I still question the endo because it said I had "villious blunting with atrophy".Inflamation was mentioned also.When the doctor called I was told the atrophy could also because by acid reflux....so he was not 100% sure and called it negative.

He told ne to go on the diet,inform my siblings and think about testing my son.I thought that was enough to scare me into the diet.After being gluten free for nearly 3 months...I have had no abdominal pain,bloating,excessive gas,heartburn etc.That's proof enough for me to stay gluten free.

I can't give you much more info as I don't have the knowledge that many veterans here do....they will have excellent answers for you....I'm sure.

Good Luck

nora-n Rookie
nora-n
Posted

Dr. Lewey did comment about the significance of increased intraepitelial lymphocytes and celiac in several postings on his blog.

Lockheed Apprentice
Lockheed
Posted

I think I was in a similar boat. I was so sick that I wasn't eating much of anything. I didn't have the leaky gut syndrome but went the other direction and actually couldn't go for five weeks which is what prompted getting me in to a GI specialist pronto. In short, I came back with one negative marker on the blood test and one positive (so it was interpreted as either a false negative or a false positive) but inflammation consistent with celiac in the colonoscopy. I also had had the LEAP test done and it indicated a food sensitivity to wheat rye oat barley hops amaranth soy and millet. So my doc told me to go gluten free right away. By the time they got me in for an endo I had been gluten free for two months and there "wasn't much inflammation to note but previous irritation and scarring that could be consistent with celaic disease" I was told by that specialist that if gluten free worked for me don't question it. Later on another specialist told me that she believes there is a range on celiacs. Some are super sensitive and can't even handle cross contamination, others may have a response to cross contamination that is not substantial and she thinks that some others might not even respond to levels like cross contamination. She rather indicated to me that being celiac is a range and it depends on how sensitive you are and how much you have in your system before your system reacts.

And no test is perfect. Any doctor that tells you that needs to go back and retake their stats courses.

tabdegner Apprentice
tabdegner
Posted

I also had a negative blood test and a negative biopsy. However, the gluten-free diet CURED me of years of pain. Since I have a strong family history of celiac (mom and sister have it) and I also have type 1 diabetes and Hashimoto's thyroid, my current doctors all agree that I probably have celiac. The biopsy was done very early on and I just don't think I had enough damage to show up yet. The damage can be very spotty and missed on a biopsy if there isn't enough damage.

I have also known more than one person that had a negative blood test and a POSTIVE biopsy, so yes, the blood tests are not always accurate.

Good luck in your journey.

ginnym Newbie
ginnym
Posted
  • Author

Thanks for all your replies folks. I think I've now got enough info to challenge the hospital on their stance that gluten can't be the culprit just because the blood test was negative. I'm quite happy for them to explore all possibilities but I'm concerned that they've dismissed gluten out of hand in spite of the clinical signs.

I suppose I want to be absolutely sure before I embark on a lifetime diet and there's still a nagging doubt in my mind because my symptoms aren't entirely typical of Coeliac. I don't have any bowel disturbance - my "only" symptom is severe upper abdominal pain and some nausea. I've just done a trial and eaten a couple of biscuits which produced some nausea and discomfort within an hour or so but not the severe pain I had before I went gluten free. I'd really hoped it would be more dramatic so that I'd be absolutely certain in my own mind but maybe I need to try it with more than a couple of biscuits.

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

Celiac.com Sponsor (A8-M):


ginnym Newbie
ginnym
Posted
  • Author
Dr. Lewey did comment about the significance of increased intraepitelial lymphocytes and celiac in several postings on his blog.

Do you have a link to the blog?

Ignore that - I've found it via Google.

dbmamaz Explorer
dbmamaz
Posted

Just remember, the doctors work for YOU. If you dont like the doctors, fire them and get new ones. They cant tell you what to eat . . they can tell you what they think they see. They dont know everything. If you want more diet proof, eat a full meal w gluten in it, three times a day for a day or two, and see if you believe it now. Then stay off the gluten and dont go back to the doctors until you feel sick.

Just my personal opinion

ginnym Newbie
ginnym
Posted
  • Author
Just remember, the doctors work for YOU. If you dont like the doctors, fire them and get new ones. They cant tell you what to eat . . they can tell you what they think they see. They dont know everything. If you want more diet proof, eat a full meal w gluten in it, three times a day for a day or two, and see if you believe it now. Then stay off the gluten and dont go back to the doctors until you feel sick.

Just my personal opinion

I'm in the UK so it's not that easy to fire the doctors! Even though we supposedly have the right to choose, I live in a rural area (the Lake District if anyone's been here) and we only have one hospital which limits my options. However, I'm currently under the surgical gastro team so I'm going to ask to be transferred to the medical ones who should know more about things like Coeliac. Luckily my GP is very good and I'm sure he'll be happy to look through some of the stuff I've researched about Coeliac - he's not frightened to admit he doesn't know everything and he treats me like an intelligent adult. However, in order to get the right tests etc, I need the hospital to accept that gluten is the cause of my symptoms.

Since I posted earlier on today I have had more reaction to the trial of two "ordinary" biscuits so I'm now pretty sure in my own mind that it is gluten even if the tests aren't conclusive (maybe I was just in denial before). It's given me the impetus to challenge the hospital so it was worth doing, even though it's painful.

Joon Newbie
Joon
Posted
I also had a negative blood test and a negative biopsy. However, the gluten-free diet CURED me of years of pain. Since I have a strong family history of celiac (mom and sister have it) and I also have type 1 diabetes and Hashimoto's thyroid, my current doctors all agree that I probably have celiac. The biopsy was done very early on and I just don't think I had enough damage to show up yet. The damage can be very spotty and missed on a biopsy if there isn't enough damage.

I have also known more than one person that had a negative blood test and a POSTIVE biopsy, so yes, the blood tests are not always accurate.

Good luck in your journey.

I'm in the same boat as tabdegner here and I am a week away from a small bowel x-ray. The GFD has helped me immensely and the doctor is saying it looks like I have an "intolerance," though my whole mother's side of the family has celiac disease. I have been so discouraged after getting my blood test and biopsy results because I have been incredibly ill. The GFD has been helping so much though.....

I hope the small bowel x-ray will show some damage. I can't believe I am hoping for positive results; it feels crazy to me.

At the same time, doesn't it seem like a really weird coincidence that I would have an intolerance when celiac disease is so prevalent in my family? And that I would skip gluten and my wicked symptoms would go away in a week? It just seems extraordinary. My workmates can't get over the difference in me.

I really do feel for you....

happygirl Collaborator
happygirl
Posted
I suppose I want to be absolutely sure before I embark on a lifetime diet and there's still a nagging doubt in my mind because my symptoms aren't entirely typical of Coeliac.

It doesn't have to be a lifetime diet if it doesn't work. Its often called a gluten free trial. Go gluten free for "x" amount of time. If it works, stick with it. If it doesn't, then go back to gluten.

happygirl Collaborator
happygirl
Posted

And share this article with your doctors. Highlight the part I am including here.

Open Original Shared Link

"According to the Mayo Clinic, this study, which is the first of its kind, used capsule endoscopy to view intestinal damage in 38 patients with untreated, biopsy-proven celiac disease. Indications for clinical evaluation were

malabsorption syndrome and iron deficiency anemia. Ninety-two percent had visible damage detected by capsule endoscopy while upper endoscopy only detected visible damage in 55% of the patients. Neither capsule endoscopy nor upper GI series yielded false positives."

IMWalt Contributor
IMWalt
Posted
I also had a negative blood test and a negative biopsy. However, the gluten-free diet CURED me of years of pain. I have also known more than one person that had a negative blood test and a POSTIVE biopsy, so yes, the blood tests are not always accurate.

Good luck in your journey.

Right on all points.

I think I will post my history here and then copy into the post about histories. I don

Joon Newbie
Joon
Posted
Right on all points.

I think I will post my history here and then copy into the post about histories. I don

IMWalt Contributor
IMWalt
Posted
Thank you so, so much for this story, Walt.

You are welcome. My GI wanted to do a small-bowel x-ray, but I declined. She mentioned the posibility that my issue could be Crohn's or ulcerative colitis. If everything I ate gave me a problem and I had no family history of celiac, maybe. But all I know is that a gluten-free diet makes me feel great. That's enough for me. She also suggested the gene testing but I declined that as well, One more expensive test that I don't need.

Good luck!

Archived

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

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


  • Member Statistics

    • Total Members
      132,393
    • Most Online (within 30 mins)
      7,748
    HeckelCrazy
    Newest Member
    HeckelCrazy
    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

    • 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. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
×
×
  • 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.