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 Lab Tests...and Still Be Gluten Insensitive? What Other Tests?

Sbwife14

By Sbwife14
in Coping with Celiac Disease

Recommended Posts

Sbwife14 Rookie
Sbwife14
Posted

Brief history.,,I had my gallbladder removed 2 years ago. About 6 months later I began having excruciating abdominal pains and flatulence and gas to the point of not being able to eat or drink anything..even water. Other symptoms were migraines, fatigue, extreme GERD, trouble concentrating feeling like my head was in a fog, constipation, feeling like I had lifted weights but I hadn't, anxiety, trouble sleeping, occasional depression. Little did I know this was all related.  I suffered with this for 7 months before my employer (who is an ENT) heard about my symptoms and made me go back to my surgeon. He ran EGD and found GERD and gastritis and placed me on 2 reflux medications. I was religious in my diet to prevent GERD but no relief.  After several months of fighting with it I referred myself to a GI specialist. I talked about Celiac and ran blood tests. They came back negative and he gave me a script for a GI cocktail and said "see you in 3 months". I was very discouraged so I did my own research on Celiac and decided to try a gluten free diet.  Every single one of my symptoms disappeared and I am down to taking 1 reflux medicine twice daily (I was taking 2 twice daily). My mood improved, sleep improved, migraines disappeared.  I thought I would introduce gluten back in to see if symptoms returned. I had 3 slices of pizza...one of the worst migraines I've ever had, constipation returned, reflux worsened. I did this 3 different times.  But I've not had any other tests to suggest gluten intolerance.

Also, I am having trouble coping with this. It is a hard adjustment for me.  I am glad I found this site. I could use the support and any advice is welcomed! I don't know anyone personally that deals with this. Thanks in advance!

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

Celiac.com Sponsor (A8-M):


BlessedMommy Rising Star
BlessedMommy
Posted

It sounds like you have NCGS. (non-celiac gluten sensitivity) Either that or you could possibly be a seronegative celiac. There are a few people on this board who tested negative on a blood test and positive on a biopsy. If you are not too far into gluten free, you may want to try a biopsy.

 

The standard for diagnosis of NCGS is if celiac tests are negative, to remove gluten and see if symptoms improve. Sounds like you've already done that and they did. So regardless, you know that gluten is an issue for you. Congrats on taking charge of your own health.

 

I'm an unclassified gluten free person (doctors couldn't figure out the source of my symptoms and I didn't think to test for celiac until after I went gluten free and by that point, I had very severe symptoms when I put it back in and wasn't able to continue with the diagnostic process) and I've gotten to the point where I don't really care as much whether people think I'm following a fad. I know that I'm not and I know what gluten does to me. There's nothing faddish about taking charge of your own health.

 

Welcome to the board! :)

glutenfreeliac Collaborator
glutenfreeliac
Posted

Acid reflux (GERD) was what started me on this path. I'd always had digestive issues, but had chalked it up to normal. Alas. After a year or so of every test and medication possible, I was still in agony. Nothing was improving. My doctor suggested (finally!) dairy elimination and celiac testing. The dairy wasn't the issue. The celiac tests were inconclusive -- blood, yes; endoscopy, no -- but a gluten-free diet changed my life. My doctor is in the "celiac is a spectrum" camp, and believes I have it. I know that I am healthy, happy, and gluten free. 

Sbwife14 Rookie
Sbwife14
Posted
  • Author

Thanks so much for the replies! IM so glad I found this website! BlessedMommy, I think I'm too far into gluten free to biopsy. I don't know how far into it is too late but I'm now to th point where I don't have excruciating pains and extreme GERD. Now if I've consumed gluten I mainly feel very tired, mood changes..sometimes headache..sometimes mild bloating or increased reflux. NOTHING like before I tried gluten free. A lot of people act like it's not real or you're just wanting attention. I know for a fact this has made a huge difference for me!! It's a hard adjustment but I'm taking it one day at a time.

Glutenfreliac, it's been a long journey for me too. ThiNg is the specialist I went to didn't suggest anything which was very frustrating for me. He mentioned celiac then with negative labs offered nothing else. That being said I'm still glad I went and he mentioned it because I had never thought of that. I just knew something was wrong. I work for an ENT. We see patients with GERD a lot...and reflux meds helped. For me I knew I was on way too much and shouldn't be dealing with GERD in the severity I was...vomiting bile after following anti reflux food precautions and taking 2 meds twice a day. I was willing to try anything. When I looked into it I found that GS will cause GERD to be worse. That got me started. I didn't realize all of the other symptoms were even related until I was gluten-free. I AM HEALTHIER ND HAPPY!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will...
    2. Jacki Espo
      - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure.
    3. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

      Hi Tiffany. Thank you for writing your dituation and circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines. Way back when I was in my 2...
    4. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...
    5. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      Fascinating.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,953
    • Most Online (within 30 mins)
      7,748
    ramonaja
    Newest Member
    ramonaja
    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
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.