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

Oh My Goodness...i Probably Have Celiac Too!

Kara'sMom

Recommended Posts

Kara'sMom Explorer
Kara'sMom
Posted

I just got back from my endoscope. This is what it says:

During the procedure we found the following:

Scalloping in the third part of the duodenum compatiable with celiac sprue (they took a biopsy)

and I won't write the rest but OH MY GOODNESS. I had a negative blood test but he said that basically didn't matter.

Has anyone here had a neg blood test but a postive biopsy??? I am freaking out here. My DD has handled it wayyyyyyy better than I could.

Mary

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

Celiac.com Sponsor (A8-M):


Joni63 Collaborator
Joni63
Posted
I just got back from my endoscope. This is what it says:

During the procedure we found the following:

Scalloping in the third part of the duodenum compatiable with celiac sprue (they took a biopsy)

and I won't write the rest but OH MY GOODNESS. I had a negative blood test but he said that basically didn't matter.

Has anyone here had a neg blood test but a postive biopsy??? I am freaking out here. My DD has handled it wayyyyyyy better than I could.

Mary

Wow. I can see where you would be surprised. Did you have any symptoms prior to testing or just get tested because your DD has it?

I have heard there is a high rate of false negatives with the blood test results.

I'm sure you will be fine. You just need time to let it sink in. At least your already past the hardest part with knowing more about gluten than most people do when first getting diagnosed. Not that I'm trying to make light of it, it's not an easy diet at all and it takes time to get used to eating and cooking differently. But after a few months it will be a lot easier. And I'm sure you will find that some symptoms you wouldn't even suspect will go away due to not eating gluten. I've had so many positive things come out of getting rid of gluten from my diet. Feeling better is well worth the small sacrifice of not eating some foods. Hang in there!

Ridgewalker Contributor
Ridgewalker
Posted

Yeah, there are lots of people here who had negative blood test/positive biopsy.

Furthermore, if you study people's signatures, you will see that the real-world occurance of 1st degree relatives that have Celiac is MUCH higher than the "studies" that have shown a 10% occurance.

In other words, I think that is one more thing the medical community needs to catch up on. Celiac is much more common in families than what they say.

(((hugs)))

cyberprof Enthusiast
cyberprof
Posted

I had a positive biopsy and a negative blood test. I think it's very common.

Mary/Kara's mom, you can do this. Actually, as an adult it may be harder (or easier) than for kids. But at least you don't have to worry about the kids at the lunch table trying to get you to trade a sandwich or friends at the dorm trying to get you to eat pizza and beer! I think I have it much easier than my 14yo son.

~Laura

Kara'sMom Explorer
Kara'sMom
Posted
  • Author
Wow. I can see where you would be surprised. Did you have any symptoms prior to testing or just get tested because your DD has it?

I have heard there is a high rate of false negatives with the blood test results.

I'm sure you will be fine. You just need time to let it sink in. At least your already past the hardest part with knowing more about gluten than most people do when first getting diagnosed. Not that I'm trying to make light of it, it's not an easy diet at all and it takes time to get used to eating and cooking differently. But after a few months it will be a lot easier. And I'm sure you will find that some symptoms you wouldn't even suspect will go away due to not eating gluten. I've had so many positive things come out of getting rid of gluten from my diet. Feeling better is well worth the small sacrifice of not eating some foods. Hang in there!

Hey..I have ZERO symptoms except for acid reflux which my entire family has and even that is mild. If I can make some good bread...I think I"ll be ok. I gotta have garlic bread with my spaghetti and I LOVE cookies and cakes..whereas DD could care less.

When I came home and told Kara that I probably have it..she's like...."it's me and you". :-)

I PRAY my son doesnt' have it as well. He has always been a MUCH better eater than Kara and would have a much harder time elminating sweets, etc....but I can't even think about that now.

I gotta go lay down for the night. I'm still tired from being knocked out and also from not eating since yesterday at 7pm. I just had a small bowl of soup b/c MAN my throat is sore and DRY.

I'll check back tomorrow. Thanks for the support. If ya'll hear a loud wail....it's me with the positive biopsy results. LOL

mary

dandelionmom Enthusiast
dandelionmom
Posted

Since my daughter's official diagnosis, I consider myself self-diagnosed. It is actually a bit easier having two of us in the house: Julia has a built-in gluten-free buddy, I feel better than I ever have, and I can eat dairy again (I've had "IBS" and have been severely lactose intolerant and anemic for YEARS). We can vent to each other about missing garlic bread. I'm pretty sure I'm going to have to learn to bake just so I can have garlic bread again. :blink:

Offthegrid Explorer
Offthegrid
Posted

I'm sure it's impossible to believe this now, but soon you won't even crave bread. In the beginning I was dying for it, or a good bagel, but now I don't even care. What I do enjoy is muffins (although haven't tried that since going soy-free) and yummy banana bread.

Breakfast was definitely the hardest meal for me. These days I usually eat fruit.

But to give you a glimpse of how much easier it gets, today I had to attend a business breakfast and watch everyone eat muffins, donuts and bagels. Didn't even bother me. I just had some orange juice and delicious grapes. yeah, sounds far-fetched to hear it now, but hang in there.

Also, gluten-free brown rice pasta is YUMMY! You won't even notice a difference. I'd avoid the corn pasta.

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

Celiac.com Sponsor (A8-M):


EBsMom Apprentice
EBsMom
Posted

Oh, my. I know you must be shocked....freaked out....sad. At least you can be gluten-free with your dd. My dd's illness and subsequent diet change are what led first me, and then my ds, to figure out that we, also, can't do gluten. It's easier when you have company. Good luck to you!

Rhonda

cyberprof Enthusiast
cyberprof
Posted
I'm sure it's impossible to believe this now, but soon you won't even crave bread. In the beginning I was dying for it, or a good bagel, but now I don't even care. What I do enjoy is muffins (although haven't tried that since going soy-free) and yummy banana bread.

Breakfast was definitely the hardest meal for me. These days I usually eat fruit.

But to give you a glimpse of how much easier it gets, today I had to attend a business breakfast and watch everyone eat muffins, donuts and bagels. Didn't even bother me. I just had some orange juice and delicious grapes. yeah, sounds far-fetched to hear it now, but hang in there.

Same with me! I used to go to business breakfasts and be the one who went back for seconds of bagels, croissants, muffins. (Can you say "addicted"?) Now I go and get the best strawberries, grapes and melons. And go back for seconds of the fruit.

I also go to potlucks and watch other people eat and I'm not even tempted. But I do make muffins to have a quick breakfast (not every day- I freeze them and thaw as needed).

~Laura

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. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      how long does it take for the genetic blood test for celiac to come back?

      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood...
    2. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Interestingly enough, while I hear you. I completely disagree. Gluten has not been 100% removed. There’s still trace amounts under the regulated amount per millions allowed. I gave only figured out in the last year, while reading chats on this site, of other celiacs still having issues and how they figured it out. If enough companies allow slight amounts o...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      I understand why that feels frustrating, because the labeling can definitely seem confusing. In the case of products like King Arthur’s gluten-free bread flour that contain gluten-free wheat starch, the wheat starch has been specially processed to remove the gluten proteins that trigger celiac disease. Because it originates from wheat, U.S. labeling laws s...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Doctors
      7

      Second chance

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should...
    5. Russ H
      - Russ H replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Concerning GP advice

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,649
    • Most Online (within 30 mins)
      7,748
    jhdcps
    Newest Member
    jhdcps
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      how long does it take for the genetic blood test for celiac to come back?

      By catnapt · Posted

      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
      Second chance

      By Scott Adams · Posted

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      Concerning GP advice

      By Russ H · Posted

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
×
×
  • 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.