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

Upper Egd Negative But Have Many C. Symptoms


delsol

Recommended Posts

delsol Newbie

I've had many of the symptoms of Celiac disease over my lifetime.

Even though I've tested negative on the blood test and the EGD

(lower intestine test). Is it possible that I may still have the

disease or be gluten intolerant?

I'm new to the site so I was hoping to see if anyone has a similar

experience to mine.

Easy bruising (always been this way)

excess gas

abdominal pain

use to have canker sores in mouth constantly but not now

weakness, lack of energy

diareah sometimes emergency

I've been diagnosed with mild gastritis and esophagitis (non baterial).

I'd rather not take medicine on a regular basis.

Thank you to anyone with advice


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Now is the time to try the diet. Testing for celiac misses far too many of us for many different reasons. You have nothing to lose by trying the diet. We are here to help and support you in that process. Ask any questions you need to and start your gluten free trial today. You need to be strict and give it at least a couple of months.

Lynayah Enthusiast

Sounds like me! I also had all of the above plus extreme body aches, HORRIBLE foot and lower back pain, vitamin D deficiency . . . the list goes on and on (see my signature).

Initially, my Rheumatologist gave me a "Celiac blood test," which came back negative. However, when I went to University of Chicago for a second opinion, they explained to me that he did not check my IgA, which is important.

Did the doctor check your IgA? Mine came back extremely high, indicating a strong gluten-intolerance but not necessarily Celiac -- some folks who are highly gluten-intolerant get as sick, if not sicker than some with Celiac.

I found it all very confusing at first. I found a book at the library that describes the testing process particularly well: Healthier without Wheat, by Dr. Stephen Wangen.

One mistake I made: I gave up gluten, felt better (despite making some mistakes), then when I went for my second opinion, I was told I needed to eat gluten for many weeks in order to be tested.

Going back on gluten was hell. It would have been much easier if I hadn't given it up first, and I probably would have had an even more accurate reading. During the challenge, I ate only one slice of bread per day. It was all I could handle. Augh!

If you want to go through the tests, you might not want to give up gluten just yet.

However, many people opt to just do the diet and not go through all the tests, particularly if they don't want weeks of sickness or if they are concerned about insurance coverage. For me, I wanted to know.

That said, I'm not convinced that the tests always show the results they should. Ravenwoodglass makes an excellent point.

For example, I spoke with a man who owns a gluten-free store. His daughter has the gene, but he and his wife tested negative. His wife can't eat gluten. Weird . . . and I hear stories like that all the time. Very confusing.

Whichever way you go, we are here to support and help you, just as Raven says. Glad you're here.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    2. - tiffanygosci posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Aldi Pueblo Lindo Yellow Corn Tortillas

    3. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    4. - trents replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    5. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,978
    • Most Online (within 30 mins)
      7,748

    Beverley Blanchard
    Newest Member
    Beverley Blanchard
    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

    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • 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.