Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Tests Are Negative

Eric80517

By Eric80517
in Doctors

Recommended Posts

Eric80517 Newbie
Eric80517
Posted

I have been to the doctor the last few weeks and the test for my celiac test cam back negative. Although my doctor said that I may be gluten sensitive? What does this mean and do I still have to be carefull about what I eat. I still have neuropathy on my left arm; wierd feeling that gets better and worse. I also have a really bad geographic tongue. Anyone with any information?

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

Celiac.com Sponsor (A8-M):


hathor Contributor
hathor
Posted

Which test or tests were performed?

Here are a couple articles about gluten sensitivity:

https://www.celiac.com/st_prod.html?p_prodid=1417

Open Original Shared Link

If you are gluten sensitive, you have to avoid gluten every bit as much as a celiac would.

Think of it this way. Celiac is a subset of gluten sensitivity. The former means that there has been damage to the villi (or the presence of a distinctive skin rash). Before the villi have been damaged or if the gluten damages the body in another way, a diagnosis of celiac is not made but there is still a problem.

Be glad that your doctor recognizes that there is more to gluten problems than celiac.

At this point, you could try for Enterolab testing. Or you could try going gluten-free and see how you respond.

Ginsou Explorer
Ginsou
Posted

Blood tests for celiac are not always accurate. My blood tests were normal, yet I was in severe abdominal pain on a daily basis and had stinging, stabbing pains in the abdomen and arms and legs.I had the Enterolab tests done. My results were positive.....tests were not terribly elevated, but the gene test showed both celiac gene and gluten sensitivity gene....also a casein problem. A gluten free and casein (and lactose free since I am also lactose intolerant) free diet has done wonders.

Your doctor sounds like a good one. My GI told me ahead of time that the blood tests were not accurate, but I wanted them anyway.

happygirl Collaborator
happygirl
Posted

Yes, definitely interested in which tests were performed. The full panel is five tests.

And, you can still have Celiac (seronegative blood work) or you can have a non Celiac gluten problem. The main way to tell will be to go 100% gluten free and see if it helps resolve your symptoms.

Eric80517 Newbie
Eric80517
Posted
  • Author

Thanks for the help. My doctor has told me to go gluten free and it has been extremely difficult. I lost about 10 pounds in the last 3 years. The other wierd thing is the geographic tongue. The bad stomach frequently isn't fun and ever since I cut back my beer intake and other gluten related products I have felt a bit better. As my doctor said the hardest thing would be to accept the fact I have a gluten sensitivity. Meals are a little bit of a challenge but I have a great wife who is an excellent cook.

The other question I have is if this sensitivity comes sudden or gradual? and Can you still eat some gluten products without over doing it? Thanks again.

mommyagain Explorer
mommyagain
Posted

Sorry, 100% gluten free is the only way to make the diet work. Most people actually get MORE sensitive to it the longer they are on the diet... that's not a bad thing, it just means that your intestines have healed to the point where being damaged in no longer their normal state!

A lot of people go "gluten-light" initially, mostly because they aren't very good at reading labels yet. Most of those people get a little better, but the problems never completely go away until they are 100% gluten-free.

Archived

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

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


  • Member Statistics

    • Total Members
      126,206
    • Most Online (within 30 mins)
      7,748
    DreDre
    Newest Member
    DreDre
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...