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

Test Results Came Back Negative

edonnelly69

Recommended Posts

edonnelly69 Newbie
edonnelly69
Posted

My test results came back negative and I was pretty certain that they would come back positive. Not sure how to read them, the nurse just said they are negative.

Gliadin antibody (IGG) in range <3 *** Reference range <11 U/mL

Reference Range:

<11 U/mL negative

11-17 U/mL equivocal

>17 U/mL positive

Ednomysial AB Screen (IGA)

Reflex to Titer

Ednomysial AB (IGA) Screen *** in range - negative Reference range - negative

Any help would be appreciated.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

There is up to a 30% chance of a false negative with blood testing. Doctors relying on the blood tests alone cost me many, many years and a lot of pain. If your going to have an endo keep on a full gluten diet until that is done. If you have already had one or don't plan on having one give the diet a good strict try. Your body will give you the answer.

Mari Contributor
Mari
Posted

This morning I came across a website that I had not seen before - The Gluten Syndrome and it is full of information about all of the different problems gluten can cause and their section on lab tests is very good.

You may have to find a Dr who will work with you in resolving your health problems, some people find that seeing a DC or ND is helpful. Some people do start living gluten free but I would suggest that you take some time to decide the next step before doing that as going back on gluten may make you feel ill. The Enterolab.com website may also help you understand what to do next. None of the blood tests can rule out celiac disease or gluten problems, they can miss 20 to 30% of Celiacs.

You could start eliminating some non-gluten foods from your diet - corn, soy, cow's milk, hot peppers - common foods which cause problems in Celiac's and non-Celiacs.

It may help us make cmments if you would describe your symptoms.

edonnelly69 Newbie
edonnelly69
Posted
  • Author

This morning I came across a website that I had not seen before - The Gluten Syndrome and it is full of information about all of the different problems gluten can cause and their section on lab tests is very good.

You may have to find a Dr who will work with you in resolving your health problems, some people find that seeing a DC or ND is helpful. Some people do start living gluten free but I would suggest that you take some time to decide the next step before doing that as going back on gluten may make you feel ill. The Enterolab.com website may also help you understand what to do next. None of the blood tests can rule out celiac disease or gluten problems, they can miss 20 to 30% of Celiacs.

You could start eliminating some non-gluten foods from your diet - corn, soy, cow's milk, hot peppers - common foods which cause problems in Celiac's and non-Celiacs.

It may help us make cmments if you would describe your symptoms.

I am having the following symptoms:

Abdominal cramps, gas, bloating, pressure, stomach rumbling all the time, constipation, fluid retention, vitamin D deficient (dr. prescribed a high dose for 6 months), bouts of vertigo, teeth issues (in the past year I have had 2 root canals, 2 crowns, 2 fillings due to my teeth chipping and breaking).

I am due to have a colonoscopy on Monday. I called my doctor and spoke to his nurse about having further testing done for Celiac and she said that she would talk to the doctor about and endoscopy. I also asked about starting to eat gluten free and she said to hold off until they did further testing. Tonight I went out for dinner, I had crab legs for the first time in a few months and the pain is terrible. I feel that I have found the source to my problems and I want to eliminate it but can't until the doctor does further testing.

I just realized that I also had shrimp in a coconut cream sauce tonight, last time I had that I had so much pain and that is what is going on tonight.

Kay DH Apprentice
Kay DH
Posted

My GI problems started last September, a couple of weeks after getting the flu. I went gluten-free after a few weeks because of D, C, bloating, mood swings, brain fog, stiff joints, muscle aches, etc. My Celiac panel came back negative, probably because of my being gluten-free. I had a Celiac Panel 3 years ago because of a rash I've had for a few decades, and it was negative (not uncommon for DH, but I didn't know that then). My endoscopy in May was negative, but then the GI only had me on the gluten challenge for a week and only took 1 biopsy of my duodenum (hard to find good doctors that know anything about celiac). So, aside from being HLA-DQ8, all tests were negative. I now know a lot more about gluten intolerance. I'm gluten-free because my health requires it. It is important to trust your body. There are reasons why it can take 9 years or more for some people to be diagnosed; these include that celiac symptoms mimic other diseases and conditions, the poor knowledge level of doctors, that people don't go gluten-free until there is considerable damage (partly because of doctors), and that the tests are not as reliable as they say.

cassP Contributor
cassP
Posted

i think its a good idea you stay on the gluten - and get an endoscopy along with your colonoscopy. and make sure they take several biopsies in different areas of your small intestine...

its good to check for everything else in the colonoscopy- while you're at it- so you can check off other possible worries.

false negatives DO happen, and many on here had negative tests - only to get positive results years later.

the EMA is 100% specific to Celiac- but i DID read that it can be a difficult test for the lab technician to execute, possibly resulting in an inconclusive result.

and i dont see Ttg on your test order. also you should get your Total Iga serum tested- being deficient in Iga could make your tests negative.

good luck, keep us posted....

ps- what makes u suspect SHRIMP to be the culprit, and not the COCONUT CREAM sauce?? also- be aware that A LOT of cooks add WHEAT FLOUR to sauces

edonnelly69 Newbie
edonnelly69
Posted
  • Author

i think its a good idea you stay on the gluten - and get an endoscopy along with your colonoscopy. and make sure they take several biopsies in different areas of your small intestine...

its good to check for everything else in the colonoscopy- while you're at it- so you can check off other possible worries.

false negatives DO happen, and many on here had negative tests - only to get positive results years later.

the EMA is 100% specific to Celiac- but i DID read that it can be a difficult test for the lab technician to execute, possibly resulting in an inconclusive result.

and i dont see Ttg on your test order. also you should get your Total Iga serum tested- being deficient in Iga could make your tests negative.

good luck, keep us posted....

ps- what makes u suspect SHRIMP to be the culprit, and not the COCONUT CREAM sauce?? also- be aware that A LOT of cooks add WHEAT FLOUR to sauces

Thank you so much for the advice. I will call my doctor and request the Ttg test as that is not one that he ran. I did actually suspect the sauce and not the shrimp, the sauce did look quite thick like it had flour in it. I am ready to change my diet but unfortunately I need to have more testing done and I really want to have the testing done to that I can put my mind at ease and deal with this head on.

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

Celiac.com Sponsor (A8-M):


edonnelly69 Newbie
edonnelly69
Posted
  • Author

This morning I came across a website that I had not seen before - The Gluten Syndrome and it is full of information about all of the different problems gluten can cause and their section on lab tests is very good.

You may have to find a Dr who will work with you in resolving your health problems, some people find that seeing a DC or ND is helpful. Some people do start living gluten free but I would suggest that you take some time to decide the next step before doing that as going back on gluten may make you feel ill. The Enterolab.com website may also help you understand what to do next. None of the blood tests can rule out celiac disease or gluten problems, they can miss 20 to 30% of Celiacs.

You could start eliminating some non-gluten foods from your diet - corn, soy, cow's milk, hot peppers - common foods which cause problems in Celiac's and non-Celiacs.

It may help us make cmments if you would describe your symptoms.

I did check out the website that you suggested and it has a lot of information, quite overwhelming but still very helpful. The nurse has told me not to adjust my diet in any way right now until they are finished with testing, although I am ready to make some changes. I did read somewhere that people from Northern Europe are prevelant to Celiac, I was born and raised in Scotland. I knew that wonderful Scottish diet would come back and bite me.

edonnelly69 Newbie
edonnelly69
Posted
  • Author

i think its a good idea you stay on the gluten - and get an endoscopy along with your colonoscopy. and make sure they take several biopsies in different areas of your small intestine...

its good to check for everything else in the colonoscopy- while you're at it- so you can check off other possible worries.

false negatives DO happen, and many on here had negative tests - only to get positive results years later.

the EMA is 100% specific to Celiac- but i DID read that it can be a difficult test for the lab technician to execute, possibly resulting in an inconclusive result.

and i dont see Ttg on your test order. also you should get your Total Iga serum tested- being deficient in Iga could make your tests negative.

good luck, keep us posted....

ps- what makes u suspect SHRIMP to be the culprit, and not the COCONUT CREAM sauce?? also- be aware that A LOT of cooks add WHEAT FLOUR to sauces

Called my doctor, and he scheduled me for an upper and lower endoscopy on Monday along with the colonoscopy. Thank you so much and I will keep you posted.

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.