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

If You Had Neg Blood, Did You Have An Endoscopy?

erin24

Recommended Posts

erin24 Explorer
erin24
Posted

Question:

Who had negative blood work but still went on to have a biopsy through an endoscopy and that come back positive? Or, did most of you just say "forget it" after the blood work and go on the gluten-free diet and not have the endo done?

I had negative blood but my dr said he wanted to do an endo. I have it thursday and I was wondering if it is likely to come back positive.

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

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

Hi Erin,

I had negative bloodwork and 2 negative biopsies if you count "patchy inflammation" as negative and of course my Gastro doc would not dx me and kept telling me it must be a severe case of IBS. I knew that was a load of bull and I decided to do some research on my own. I was eventually Dx thru Enterolab and began the gluten-free diet. I could tell a difference within 3 days! I was so excited but then I never got back to 100% and was finally dx with Lupus last year and found out that is attacks my GI tract. My rhuemy put me on an immune- suppressant med called Imuran and no more diarrhea!!! The very next morning I did not have to take Immodium as I had to do every morning for 3 months prior.

In my opinion it is less invasive and cheaper to try the gluten-free diet and that will let you know for sure if you are gluten sensitive or not as the blood test and biopsy are not always accurate.

I hope you get some answers and feel better soon! :)

slpinsd Contributor
slpinsd
Posted

My blood work was only slightly positive (Elevated AGA IgG), and my doctor did both an endo and colonoscopy. The bio came back negative, but she says she is surprised b/c she has pictures of damage (but also says she can't clearly diagnose me with Celiac). I'm waiting for a second opinion on the biopsy itself.

I'm glad I did the biopsy-even though it was inconclusive. I'm in the minority here- if a dr. is offering to do a biopsy, and you have insurance, I say do it!! In my opinion, it is not 'invasive' at all. The docs do it all the time, so there is no room for embarrassment. It doesn't hurt, there was no pain, you are somewhat sedated and might not even remember. The only thing I could have definitely passed on was the prep for the colono. it's nasty.

I was lucky and had my endo scheduled for 3 days after my appt- if you have to wait a long time and are sick then you may want to go gluten-free. Figure that it's only one time, and it is over with.

Aquina1300 Rookie
Aquina1300
Posted

Hello erin :D

My sixteen month old nephew had negative blood results and a positive biopsy.

-Aquina

Felidae Enthusiast
Felidae
Posted

My blood tests were negative, so I went gluten-free just to try it. My doctor said the endo. might be negative anyways so she didn't recommend eating gluten again just to get the endo. done. It would have been nice to have a diagnosis, but I am so much healthier, I shouldn't really have any regrets.

Also, my grandmother probably had celiac. My mother also probably has celiac, or at least her symptoms point in that direction.

ravenwoodglass Mentor
ravenwoodglass
Posted
Question:

Who had negative blood work but still went on to have a biopsy through an endoscopy and that come back positive? Or, did most of you just say "forget it" after the blood work and go on the gluten-free diet and not have the endo done?

I had negative blood but my dr said he wanted to do an endo. I have it thursday and I was wondering if it is likely to come back positive.

I had done a elimination diet under the guidance of an allergist. When I had a strong reccurance of symptoms with the addition of wheat I was referred to a GI. He told me to start eating gluten again and scheduled me for the endo a few days later. I became so ill that I could not make it to the appointment. The GI then officially diagnosed me celiac. Interestingly my DD and DS both showed positive on blood work, I don't. She had the endo which showed preceliac changes, He was diagnosed by dietary response alone with postive blood, he has much stronger symptoms than she does.

erin24 Explorer
erin24
Posted
  • Author
Hello erin :D

My sixteen month old nephew had negative blood results and a positive biopsy.

-Aquina

Was you nephew gluten-free before the blood test or endo?

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

Celiac.com Sponsor (A8-M):


Aquina1300 Rookie
Aquina1300
Posted

Hello Erin :D

No. My nephew was not gluten free before the blood test or endo. The Dr told my sister to eat normally until he was officially diagnosed.

-Aquina

erin24 Explorer
erin24
Posted
  • Author
Hello Erin :D

No. My nephew was not gluten free before the blood test or endo. The Dr told my sister to eat normally until he was officially diagnosed.

-Aquina

Thanks for the info. That gives me a little hope since I was not gluten-free for the blood test which came back negative. Maybe the biopsy will be positive b/c I would like a conclusive diagnosis. Anyway, I guess we'll see.

Smitten Rookie
Smitten
Posted
Was you nephew gluten-free before the blood test or endo?

My blood test came back negative and my biopsy showed blunt villi. I would go through the biopsy. It was a piece of cake. I'm so glad I did it. I have 5 immediate family members that have celiac and that's why I went through with it. I also had symptoms so I wanted to make sure.

Shelly

erin24 Explorer
erin24
Posted
  • Author
My blood test came back negative and my biopsy showed blunt villi. I would go through the biopsy. It was a piece of cake. I'm so glad I did it. I have 5 immediate family members that have celiac and that's why I went through with it. I also had symptoms so I wanted to make sure.

Shelly

Wow, thanks Shelly. I have the endoscopy scheduled for this thursday. Did your dr persue the endoscopy or did you push for it? Were you awake for it?

So, you are officially dx'd even though the blood test was negative, right? I am assuming you are now gluten free...have you started feeling better? How long did it take you to feel better? Also, if you don't mind me asking...what were some of your main symptoms?

Rusla Enthusiast
Rusla
Posted

I had negative blood but positive skin biopsy.

Smitten Rookie
Smitten
Posted

Well, I'm still in the process of getting dx'd. My doctor actually called a Celiac Specialist at Mayo clinic to see what my next step should be. I'm seeing a dematologist next week for the scaley, itchy patches on my legs. Also, he wants me to get a gene test. I am not gluten free yet.

My symtoms are bouts of diarrhea, patches on my legs, hypothyroidism, anxiety and I have 5 immediate family members with celiac. Mom, sister, niece, Uncle & cousin.

I really didn't have to push for the endo....he just suggested doing it. My big question is can blunt villi mean something else other than celiac? If not, I guess I have it. It was so easy. I was not awake and felt fine afterwards. The hardest part for me was not being able to drink anything 4 hours prior to the procedure. It was at 1:00 p.m.

Good Luck on Thursday! You will do just fine :o)

Archived

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

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


  • Member Statistics

    • Total Members
      132,145
    • Most Online (within 30 mins)
      7,748
    Kundrey
    Newest Member
    Kundrey
    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

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.