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

Celiac Blood Tests Were Negative

marissa088

Recommended Posts

marissa088 Newbie
marissa088
Posted

I got my blood work results in the mail yesterday. Everything that was tested was negative for Celiacs disease. I was happy, but also let down because I have no clue what is causing my problems. I am having chronic canker sores. I have three in my mouth right now. They are so painful that I just want to pull my hair out. I am still having chronic constipation that will turn into diarrhea and then go back to constipation.

I decided a few days ago to try to eliminate as much wheat from my diet. I usually eat a lot of pasta and/or bread because I like it, so it was weird not eating those things. Today when I woke up, I didn't feel fatigued like I usually do in the mornings. I'M NOT BLOATED! My stomach is actually flat. I weighed three pounds less than I usually do (probably water weight?) and I had a normal bowel movement this morning! I'm really happy except for the fact that I still have my canker sores.

So, I've read through other posts and found out there is a difference between gluten intolerance and celiacs disease. I'm wondering if I need allergy testing done to figure out if I'm gluten intolerant or just do the elimination diet and take the wait and see approach? I was also wondering if anybody else knows what can cause chronic canker sores that I should be tested for? So far I know it's not celiac or the herpes/cold sore virus.

Thanks!

Marissa

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

Celiac.com Sponsor (A8-M):


samcarter Contributor
samcarter
Posted
I got my blood work results in the mail yesterday. Everything that was tested was negative for Celiacs disease. I was happy, but also let down because I have no clue what is causing my problems. I am having chronic canker sores. I have three in my mouth right now. They are so painful that I just want to pull my hair out. I am still having chronic constipation that will turn into diarrhea and then go back to constipation.

I decided a few days ago to try to eliminate as much wheat from my diet. I usually eat a lot of pasta and/or bread because I like it, so it was weird not eating those things. Today when I woke up, I didn't feel fatigued like I usually do in the mornings. I'M NOT BLOATED! My stomach is actually flat. I weighed three pounds less than I usually do (probably water weight?) and I had a normal bowel movement this morning! I'm really happy except for the fact that I still have my canker sores.

So, I've read through other posts and found out there is a difference between gluten intolerance and celiacs disease. I'm wondering if I need allergy testing done to figure out if I'm gluten intolerant or just do the elimination diet and take the wait and see approach? I was also wondering if anybody else knows what can cause chronic canker sores that I should be tested for? So far I know it's not celiac or the herpes/cold sore virus.

Thanks!

Marissa

Marissa,

It is possible to have negative blood panels and still have celiac disease or gluten intolerance. I tested negative on EMA (the only test my dr had done) but I have responded positively so far to a dietary change. It sounds like you are having a positive response to diet, which could mean you either have celiac disease that the blood panels missed, or you are gluten intolerant.

An allergy testing for wheat will not determine whether you are gluten intolerant. Allergy to wheat is different from gluten intolerance. You could order stool testing from Enterolabs--these are said to be much more sensitive to gluten intolerance than the blood panels are--and you do not have to be eating gluten to have those done. Just do a Google for Enterolab. Many people on this forum have used enterolab after negative blood tests and found they were gluten intolerant.

As for the canker sores, I get those when I am low on Pantothenic Acid. It's a B vitamin, and if you have malabsorption due to gluten intolerance or celiac you can be low on that. You can buy supplements and take them--it has always worked for me. It still takes time for the sores to go away, but they go away faster for me when I take the Pantothenic Acid. Ask at a health food store.

marissa088 Newbie
marissa088
Posted
  • Author
Marissa,

It is possible to have negative blood panels and still have celiac disease or gluten intolerance. I tested negative on EMA (the only test my dr had done) but I have responded positively so far to a dietary change. It sounds like you are having a positive response to diet, which could mean you either have celiac disease that the blood panels missed, or you are gluten intolerant.

An allergy testing for wheat will not determine whether you are gluten intolerant. Allergy to wheat is different from gluten intolerance. You could order stool testing from Enterolabs--these are said to be much more sensitive to gluten intolerance than the blood panels are--and you do not have to be eating gluten to have those done. Just do a Google for Enterolab. Many people on this forum have used enterolab after negative blood tests and found they were gluten intolerant.

As for the canker sores, I get those when I am low on Pantothenic Acid. It's a B vitamin, and if you have malabsorption due to gluten intolerance or celiac you can be low on that. You can buy supplements and take them--it has always worked for me. It still takes time for the sores to go away, but they go away faster for me when I take the Pantothenic Acid. Ask at a health food store.

Thanks for responding. I had a stool sample done through my doctor's specific lab, I don't know the name offhand. I am waiting for those results. I will look into Enterolab though. I've never heard of Pantothenic Acid either. I will definitely look into this. Thanks!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

marissa088- That sounds like my story. All of my tests have been negative yet I have had a very positive response to the gluten free diet. My advice is to do the diet. It is so worth it. I feel better than I have in years.

babysteps Contributor
babysteps
Posted
marissa088- That sounds like my story. All of my tests have been negative yet I have had a very positive response to the gluten free diet. My advice is to do the diet. It is so worth it. I feel better than I have in years.

Marissa 088 - I agree with Amyleigh. You know your body better than the testing lab :D

veggienft Rookie
veggienft
Posted

If ingesting gluten makes you feel bad then stop ingesting gluten. Your health depends on it.

If you need a name for that, it's called celiac disease.

..

Tim-n-VA Contributor
Tim-n-VA
Posted

I will disagree that an allergy test will not find gluten intolerance. It might just seem semantics but gluten intolerance is used in a lot of different ways, many times meaning "something bad happens when I eat gluten".

If all you want is to feel better - and that is a personal decision - and gluten makes you feel bad, stop eating it (as stated before). However, if you are one of those people who want to know what is going on in your body (i.e. auto-immune verus allergy versus digestive), it is terrible advice. There two to three threads per week on this board from people who cut out gluten on their own and are now trying (or thinking about) adding gluten back to get definitive tests.

Bottom line - decide what level of certainty you want from conventional medicine before you remove gluten. Either decision is correct and up to you. Most people report the most severe symptoms after consuming gluten after being gluten-free for a while.

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

Celiac.com Sponsor (A8-M):


nora-n Rookie
nora-n
Posted

But usually people with other genes than DQ2 or DQ8 do not manage to get an official diagnosis, although they may be even more sensitive to gluten than the DQ2 and DQ8, who mainly have the reactions in the intestines.

For instance DQ1 have more neurological symptoms, and others have more immunological problems and all kinds of gluten related dieseases, without showing the typical villi damage.

I wonder if it might be easier to do a gene test and only try to get a celiac diagnosis if the genes are DQ2 or 8.

i am aware of that there are a number of Dq1 and DQ7 and DQ9 that are officcially diagnosed, but someone posted here a couple of months ago that there are only six officially diagnosed DQ6 (= DQ1) celiacs out there in the U.S. There re a few in other countires too. But DQ1 is so common that the chances of an official diagnosis are small if the blood work is not highly positive.

A number of DQ1 have posted about all the improvements after going gluten-free, and Dr. Hasjivassiliou writes that 20% of his gluten ataxia patients are DQ1.

nora

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

    • 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. 
    • 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.
×
×
  • 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.