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

What Did I Eat Wrong?


DavinaRN

Recommended Posts

DavinaRN Explorer

I know it's advised to eat at home in beginning, but lunch date planned months ago. Had my blood work thins am (already decided going gluten free today-not willing to do biopsies when it doesn't change treatment). So I had Mexican buffet-lettuce, cheese, refried beans, beef with onions, chicken with onions/peppers, tortilla chips. That's it other than diet coke. Any ideas?


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

just the fact that it was a buffet would be enough. no control on CC.

GottaSki Mentor

It could have been anything. There is no way to know on your first day gluten-free. I would not consider a buffet to be gluten-free. The food could also just have been hard on your system. Eating out takes time to learn to do safely and even when all precautions are made, accidental gluten ingestion is a very real possibility.

Read the "Newbie 101" thread and ask questions where there is confusion. The transition to gluten-free living is not an easy one. You will make mistakes and you will likely become frustrated. It will get much easier with time.

Hang in there!

tylerevelyn Newbie

I know it's advised to eat at home in beginning, but lunch date planned months ago. Had my blood work thins am (already decided going gluten free today-not willing to do biopsies when it doesn't change treatment). So I had Mexican buffet-lettuce, cheese, refried beans, beef with onions, chicken with onions/peppers, tortilla chips. That's it other than diet coke. Any ideas?

I had a very bad reaction to restaurant corn chips not too long ago. They're fried with flour tortillas. And, I highly doubt that they're made of JUST corn.

DavinaRN Explorer

Thanks everyone. I'll read 101 thinking this may be a lot harder Than I thought

1desperateladysaved Proficient

Oh, sorry. I hope you will be feeling better soon.

Yes, it is quite a trip on the road to better health. Keep treking, though.

Diana

Skysmom03 Newbie

I would stay away from foreign foods in restaurants! I would do thd endoscopy. It is better to know. No reasOn to do the diet if you don't really have to.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I would stay away from foreign foods in restaurants! I would do thd endoscopy. It is better to know. No reasOn to do the diet if you don't really have to.

If you react to gluten it doesn't matter what the tests say -- you have to do the diet.

Skysmom03 Newbie

That isn't necessarily true. There are false positives. There is a reason the drs make you do the endoscopy. That is the only thing that confirms diagnosis. If blood work was all it took there would be no need for her to even go to the specialist. Also the endoscopy can also indicate whether there are other issues other than the celiac.

mushroom Proficient

That isn't necessarily true. There are false positives. There is a reason the drs make you do the endoscopy. That is the only thing that confirms diagnosis. If blood work was all it took there would be no need for her to even go to the specialist. Also the endoscopy can also indicate whether there are other issues other than the celiac.

No, Sky'smom, I'm not talking about testing or diagnosis at all. Not saying you shouldn't try for a diagnosis either. Just saying, no matter what turns out, as a general rule if gluten bothers you it makes eminent sense to avoid it :)

psawyer Proficient

That isn't necessarily true. There are false positives. There is a reason the drs make you do the endoscopy. That is the only thing that confirms diagnosis. If blood work was all it took there would be no need for her to even go to the specialist. Also the endoscopy can also indicate whether there are other issues other than the celiac.

There are several possible blood tests, some of which are more accurate than others. DGP IgA is the newest. It is sensitive and highly specific to celiac disease. Many doctors will now diagnose celiac disease based on a positive DGP IgA result.

Yes, the endoscopy can find other conditions besides celiac disease.

ETA: mushroom and I were typing at the same time.

kareng Grand Master

That isn't necessarily true. There are false positives. There is a reason the drs make you do the endoscopy. That is the only thing that confirms diagnosis. If blood work was all it took there would be no need for her to even go to the specialist. Also the endoscopy can also indicate whether there are other issues other than the celiac.

Even if you don't have Celiac, you may have gluten intolrance and would need to eat gluten-free.

Fromthe Univ of Chicago Celiac center:

"What is gluten sensitivity?

Gluten sensitivity is an adverse food-induced reaction, possibly immune-mediated, but for which we have no diagnostic test available. This is a reaction in the digestive tract that causes gastrointestinal symptoms just like irritable bowel syndrome (IBS). It may also lead to other body systems problems, such as fatigue, headache, etc. Unlike celiac disease however, it’s not restricted to people that are HLA-DQ2 and/or DQ8 (the genes that must be present for celiac disease to exist), and it might be transient. Also, there is no known association with autoimmune conditions, and it’s not known to be associated, if untreated, with long-term risk of malignancies.

Although there is currently no diagnostic test (even an intestinal biopsy would be normal), we’re actively involved in research to define a biological marker that could be used to support a diagnosis of gluten sensitivity."

Open Original Shared Link

ravenwoodglass Mentor

That isn't necessarily true. There are false positives. There is a reason the drs make you do the endoscopy. That is the only thing that confirms diagnosis. If blood work was all it took there would be no need for her to even go to the specialist. Also the endoscopy can also indicate whether there are other issues other than the celiac.

False positives are extremely rare however false negatives are common. There are doctors who are now diagnosing with just positive blood tests now that the newer tests that are very specific for celiac have come out.

If I had waited for a positive blood test I would be dead. And my GI wouldn't do an endo without one. There are also false negatives on endoscopy for a variety of reasons.

IMHO response to the diet and reoccurance of symptoms when injesting gluten after being gluten free is one of the most reliable tests there is.

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.