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 Celiac.com!
    eNewsletter
    Donate

Diagnosed (I Think?)

abby03

Recommended Posts

abby03 Contributor
abby03
Posted

Hello! I'm 17 and have had the Celiac blood tests and endoscopy done and am now starting the gluten free diet after visiting with my GI doctor a few days ago. She told me to start the diet even though my biopsy on my endoscopy came back negative. She said that my blood tests were positive, that all of my symptoms match Celiac disease, and that the endoscopy looked like Celiac, but the biopsy came back negative. I've been a little bit confused because I thought that the endoscopy results were even more accurate than the blood test. Could the blood test be a false positive? Do I still consider myself a Celiac even though the biopsy said I don't have it? Or do I just consider myself to be gluten intolerant? Regardless, I'm going to stick with the diet to see how I feel, but I'm just confused as to how one test said I have it and the other said I don't. Has that happened to anyone?

I also have a few questions about starting this diet if anyone could help me:

1. What's the deal with Swanson Chicken Broth? I've tried and tried to find out whether or not it's safe but all the info I found was old and the box says nothing. I'm assuming that it isn't safe. I know that progresso is safe but it's so dang hard to find around here. My grocery stores seem to carry only Swanson and then whatever the store brand is.

2. On my first night I was having frozen broccoli with my dinner. I looked at the bag (it was wal-mart brand) and it said "may contain traces of wheat" which really surprised me and showed me that I really, REALLY have to read EVERY label. I didn't use that bag but found another package of frozen broccoli in the back of the freezer. This package didn't say anything about allergies so was this one safe?(I think this was a grocery store brand) If the packages of frozen fruits and veggies don't say anything about allergens can I assume that they're safe or do they need to say "gluten free" on them?

3. Do I really need new kitchen supplies? We don't have a dishwasher but would I be fine with just new wooden spoons, colander, non-stick skillet, and baking sheet? What can I still use that has been used for gluten food and what do I need to get to be my own?

4. Riceworks Salsa Fresca chips taste AMAZING. Not a question but WOW are they good! Especially after tasting hint of sea salt nut-thins which I am not a fan of. Any other good product recommendations? I bought some wholesome-goodness Chipotle salsa last night that says it's gluten free and I bought some tinkyada pasta to try with a jar Prego pasta sauce I have that says it's gluten free. I've read that people have had issues with wholesome goodness and prego but are they okay as long as the jars say "gluten free"?

ahh sorry for so many questions! I'll stop there for now but I'm sure I'll have many, many more later! And sorry if I seem ignorant or a little uneducated. This is all very overwhelming and both interesting and frustrating at the same time. I'm trying to learn as much as I can as fast as I can while trying to educate my parents when I'm not even educated myself! It's a little crazy but I'm excited to hopefully get the hang of it and start feeling better soon. Thanks to anyone who can answer any of my long questions!

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Mom-of-Two Contributor
Mom-of-Two
Posted

You will learn quickly to always read your labels, always! Most frozen veggies are just the veggie, was there any seasoning in that particular broccoli? I have never seen that before on frozen veggies, just be sure to avoid any cheese sauces, or seasonings and season yourself, steaming them gives the best flavor and texture I think.

My fave chicken broth is Pacific Natural Foods- they have soups and broths, many organic but all have gluten free labels.

Swanson 99% chicken broth and Natural Goodness chicken broth are gluten free but tend to have more junk ingredients, try to get a brand that has natural ingredients.

I hope the diet gives you great results!

Link to comment
Share on other sites
abby03 Contributor
abby03
  • Author
Posted

You will learn quickly to always read your labels, always! Most frozen veggies are just the veggie, was there any seasoning in that particular broccoli? I have never seen that before on frozen veggies, just be sure to avoid any cheese sauces, or seasonings and season yourself, steaming them gives the best flavor and texture I think.

My fave chicken broth is Pacific Natural Foods- they have soups and broths, many organic but all have gluten free labels.

Swanson 99% chicken broth and Natural Goodness chicken broth are gluten free but tend to have more junk ingredients, try to get a brand that has natural ingredients.

I hope the diet gives you great results!

It was just plain broccoli florets, which was why it was so crazy to me! But it sure taught me a quick lesson, so that's good at least. Thanks for the suggestion on the chicken broth- I'll look out for that brand!

Link to comment
Share on other sites
sa1937 Community Regular
sa1937
Posted

Welcome, Abby! It would be very rare, if at all, to get a false positive on your celiac panel. False negatives are quite common. If the biopsies were taken in the wrong place, it's entirely possible to have them come up false, especially as damage is sometimes patchy. So consider yourself celiac and make yourself at home here.

I did replace a lot of kitchen equipment but a lot of that is because I wanted some new things. Definitely you need those things you mentioned but if you're talking about cookie sheets, parchment paper will be your friend. Or aluminum foil. A new dedicated gluten-free toaster is a must, too. Basically use good judgment...if you can get something clean, there's really no reason to replace it.

Kitchen Basics is a brand of chicken and beef broth that is gluten-free...my local Wal-Mart carries it. For store brands, you have to read the label. My local Food Lion stores now have "My Essentials" as their store brand and both the chicken and beef broths are gluten-free.

You might also want to check out this Newbie 101 info: http://www.celiac.co...ewbie-info-101/

Link to comment
Share on other sites
sa1937 Community Regular
sa1937
Posted

It was just plain broccoli florets, which was why it was so crazy to me! But it sure taught me a quick lesson, so that's good at least. Thanks for the suggestion on the chicken broth- I'll look out for that brand!

I think Wal-Mart has added a lot of CYA statements to their products...things they used to have marked gluten-free. So yes, we do become very familiar with reading labels every time.

Link to comment
Share on other sites

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. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...