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

How May Of You


Becky6

Recommended Posts

Becky6 Enthusiast

How many of you tested negative on the celiac panel but the diet is helping? Just curious!

Thanks!


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
How many of you tested negative on the celiac panel but the diet is helping? Just curious!

Thanks!

My results on the blood tests were very inconclusive (though I had been gluten-free for two weeks), but my results on the diet have been good, and gluten challenges have produced obvious symptoms.

Becky6 Enthusiast

I just got my blood work back today and it was all normal. I have been gluten-free since thursday and my stomach is already feeling better some of the time! My daughter is also responding to the diet as well! I was just surprised about my results due to all of my symptoms and the bit of improvement I am noticing from being gluten-free. I was just curious how many others were in the same boat as me.

aikiducky Apprentice

I had negative bloodwork, but I'd been gluten free for about five weeks by then. But I'm definitively responding to the diet! I react very clearly and consistently with the same symptoms every time I accidentally have something with gluten in it. Otherwise I feel better than ever in my life before.

Pauliina

pixiegirl Enthusiast

My original internist did a single Celiac blood test (I'm not sure what) but I went gluten-free and felt tons better, I changed internists and also paid to get my DNA tested (I have 2 main celiac genes). My current Dr. feels that with the DNA test and how sick I get when I do accidently ingest gluten there is no doubt that I have Celiac. She sees no need for me to eat gluten for months to get a positive blood/endoscopy test.

My GI also mention that the Celiac test my previous doctor did is worthless. I did finally have an endoscopy but for another problem and it was a year after being gluten-free, my GI said there were no signs of Celiac so I'm happy that the diet is working for me. That's all I need.

Susan

Jenn2005 Contributor

My husband had negative bloodwork, positive endoscopy biopsy, 1 Celiac Gene DQ2 and 1 Gluten Sensitive Gene DQ1, positive Fecal Antigliadin IgA.

My husband had negative bloodwork, positive endoscopy biopsy, 1 Celiac Gene DQ2 and 1 Gluten Sensitive Gene DQ1, positive Fecal Antigliadin IgA.

Jennifer

darkangel Rookie

My bloodwork was all "normal," but eliminating gluten and casein has made a huge difference for me.


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



Celiac.com Sponsor (A8-M):



kabowman Explorer

No bloodwork for me (my eldest son's blood test was negative) and EDG showed no damage to three sections tested after 3 months of being gluten-free. I have an aunt that tested positive.

Guest nini

My daughter's ped. GI only did one test and it was negative, but the diet has helped her incredibly. Within a few days of her starting the diet her health improved drastically. I know that she has a genetic predisposition to it because I was positively dx with it.

KaitiUSA Enthusiast

I think if you feel better off of gluten then you should definitely stay off of it. That is the ultimate test and whether you have celiac or just have a problem with gluten you still need to be off of it.

mightymorg Rookie

I fit into this category. I had 4 of the 5 blood tests done, was told they were "normal" (they didn't even have the exact values), but I went gluten-free a week before the tests were done. I feel a lot better being gluten-free, though, and just eating plain, easy to digest foods. I don't feel the desire to go back to eating gluten and chancing feeling like hell again!

nikki-uk Enthusiast

Yes my husband had negative bloods(Ttg) but positive biopsy.

He's been gluten-free for just over a year (still recovering) but much better :)

darkangel Rookie

Off topic, but nini, can I just say I love your avatar? :D

Felidae Enthusiast

My blood tests were negative. However, I'm not sure if the full panel was tested. The difference from going gluten-free has been like night and day. I didn't know that I could feel normal (healthy, I guess?) again. My doctor saw me after being gluten-free for five months and she was very happy with the improvements to my health and well being. She didn't think a scope would be beneficial because I would have to eat gluten for three months and be sick again. I also have two family members that have always had food, gi, and anemia type problems their entire lives, so who knows what I have.

jnifred Explorer

Mine were in "normal" range, but I discovered that I've been eating a very low gluten for a long time without knowing it, without even realizing what gluten is. The difference after cutting out that last bit of gluten has been huge, my arthritis has not had any major flareups since, my jaw is better, sleeping better and I'm not even going into the BM issues, butt :D it is all better.

I am going to have the genetic testing done though, my mom and my grandmother both have the same issues and I have 4 kids, one of whom I am concerned about and so I want to know if the gene is there for us...

DonnaD Apprentice
Mine were in "normal" range, but I discovered that I've been eating a very low gluten for a long time without knowing it, without even realizing what gluten is. The difference after cutting out that last bit of gluten has been huge, my arthritis has not had any major flareups since, my jaw is better, sleeping better and I'm not even going into the BM issues, butt :D it is all better.

I am going to have the genetic testing done though, my mom and my grandmother both have the same issues and I have 4 kids, one of whom I am concerned about and so I want to know if the gene is there for us...

My D was positive by biopsy, neg bloods. I have fibro and ibs, joint problems, sleep issues (same as my most of my family) and am so much better on the diet. we also had a low gluten diet 'cos of my IBS. What jaw problems do you have? I grind my teeth have loads of fillings and have one tooth that fractured and abcessed and had to have root cannaled and crowned in gold as it is strong enough for teeth grinders, it is my most expensive jewlery :) I'm waiting for genetic testing. I just found out today that a cousin also has fibro she is from the side of the family that are very overweight.

Rachel--24 Collaborator
Off topic, but nini, can I just say I love your avatar? :D

Lol..my Mom reads these posts and everytime she sees Nini's avatar she makes a comment about not liking it. I say HELLO!!! Beavis and Butthead....have you *never* seen them before??? She has no clue. :rolleyes:

I love the avatar. :D

Rachel--24 Collaborator

I had negative bloodtests (2 weeks gluten-free before tests). I figured it was something else wrong with me so after only trying the diet for those 2 weeks I went back to eating normal and gradually got sicker and sicker. I went on a anti-candida diet and dramatically improved within days so figured I had found out my problem...Candida. I was *mostly* gluten-free but after buying new hair and skin products I went down-hill fast. The one thing all these new items had in common was wheat-germ oil so I got curious about Celiac again. I was having obvious reactions to the lotion on my hands..which was getting onto my food. I went the Enterolab route....came back positive for everything. I just recently had a biopsy after having been gluten-free for 6 months. It was negative.

elisabet Contributor

My son had negative blood test for celiac,and we can see the difference on a Gluten-free Casein-free diet,just like day and night.

StrongerToday Enthusiast

My blood tests and food allergy testing all came back "perfectly fine". Yet now that I've been GFDF since August I have much more energy, am happier to be around (a direct quote from my own mother), have lost 35 pounds and am slowly inching away from taking up permanent residence near bathrooms!! Not every day is great - but I know that some day I will look back on all this as just a memory.

jnifred Explorer
My D was positive by biopsy, neg bloods. I have fibro and ibs, joint problems, sleep issues (same as my most of my family) and am so much better on the diet. we also had a low gluten diet 'cos of my IBS. What jaw problems do you have? I grind my teeth have loads of fillings and have one tooth that fractured and abcessed and had to have root cannaled and crowned in gold as it is strong enough for teeth grinders, it is my most expensive jewlery :) I'm waiting for genetic testing. I just found out today that a cousin also has fibro she is from the side of the family that are very overweight.

Yep, teeth grinding, jaw clenching all the time. Couldn't chew gum, eat bagels or etc. anything "chewy" was out of the question for YEARS for me. I am sooooo much better, still can't do anything too chewy and of course bagels are off the list of availablity for me, but I am able to chew gum and I don't have the pain in my jaw that was there all day every day for I can;t even tell you how many years. I have a nice $200 mouth piece that I was/am supposed to wear at night to keep from grinding down my teeth. I hate that thing and am not wearing it anymore.

I was told not to even get the biopsy since I eat so little gluten anyway and now I am gluten free and there is NO WAY I am eating that again especially in the quantities and for the length of time needed to get accurate tests. I have too much to do and too many people to take care to subject myself to that.

Archived

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

  • 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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748

    MollyK
    Newest Member
    MollyK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.