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

I Need A Bit Of Advice

brittanyrk

Recommended Posts

brittanyrk Newbie
brittanyrk
Posted

Hi. I'm new here, but have been mostly gluten free for 5 years now.

My question is, when I was tested (blood test) for celiac disease (at age 13), I had not been eating any wheat for several weeks prior to. I didn't realize at the time that that made a difference. My symptoms were rather mild and I was only tested because my dad had tested positive. So my parents decided it was best for me to stay gluten free. So fast forward to just recently, I local restaurant got in a new item, which I checked out and loved. It had modified food starch. I never got sick and I ate the several times before I remembered to check out the MFS further. Turns out it was Wheat. So, being the adventurous 18 year old I am, I started eating other things with wheat in them. I'm feeling fine! no symptoms at all. I've started eating a tiny bit daily the last few weeks and I can't notice any difference.

So what I'm getting at is- should I be retested? or just eat as long as I don't go overboard?

Thanks for any advice you can offer!

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

Celiac.com Sponsor (A8-M):


Guest Bobbi
Guest Bobbi
Posted

I am surely not a doctor but my advice would be to be retested. If you did not test positive for celiac when you were younger it may have been because you were not eating gluten prior to taking the test or that you do not have celiac. The blood screening test is easy and if you have been "glutenated" you might as well be tested now. It would be silly to live "gluten-free" if it is not necessary. Just remember you need to be eating products with gluten in it prior to the test or it will not be accurate. Good luck....I hope you continue to feel well!

CarlaB Enthusiast
CarlaB
Posted

I would say to continue your binge for four months, then get retested. That is how long it takes for the damage to show up in testing. If at any time you start showing symptoms, then it's up to you whether you want to continue until time for testing, or quit because you know it's a problem for you.

You will want to eat the equivalent of three or four slices of bread daily.

Honestly, if I were you, I'd want to know for sure just like you do.

Lisa Mentor
Lisa
Posted
Hi. I'm new here, but have been mostly gluten free for 5 years now.

My question is, when I was tested (blood test) for celiac disease (at age 13), I had not been eating any wheat for several weeks prior to. I didn't realize at the time that that made a difference. My symptoms were rather mild and I was only tested because my dad had tested positive. So my parents decided it was best for me to stay gluten free. So fast forward to just recently, I local restaurant got in a new item, which I checked out and loved. It had modified food starch. I never got sick and I ate the several times before I remembered to check out the MFS further. Turns out it was Wheat. So, being the adventurous 18 year old I am, I started eating other things with wheat in them. I'm feeling fine! no symptoms at all. I've started eating a tiny bit daily the last few weeks and I can't notice any difference.

So what I'm getting at is- should I be retested? or just eat as long as I don't go overboard?

Thanks for any advice you can offer!

Brittany, may I call you that.?

You tested positive for Celiac, which mean that you cannot have wheat, barley, rye, malt and selective oats. Being diagnosed with Celiac is a bit complex. You might overload and get hit hard by gluten symptoms and it might build up and may be dibiliatory at some time.

Perhaps you doctor caught this early and you have few symptoms. But this will be with you for life. Even if you do not have symptoms, you could still be doing damage to your intestines. Some here have silent symptoms, but that damage still continues.

If you are diagnosed with Celiac, please read as much as you can from this site. It is the best source for information that you can find. We are a good group of folks and are wiling for afford you any information that you need. Ask away.

Regarding Modified Food Starch in the US if it is derived for wheat, by law it would be included in the labeling statement on the ingredients.

Welcome to Celiac land.

CarlaB Enthusiast
CarlaB
Posted
You tested positive for Celiac

By her post, I was assuming her test was negative. If it was positive, I agree with Momma Goose.

brittanyrk Newbie
brittanyrk
Posted
  • Author

they said the results showed borderline positive.... any idea what that means?

Lisa Mentor
Lisa
Posted

Your key work is "positive"... Take time to read from some of these post. You might find a light bulb moment?

Welcome, and please continue to join us.

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

Celiac.com Sponsor (A8-M):


debmidge Rising Star
debmidge
Posted

Borderline Positive and you were eating gluten....I think you might have to consider yourself as having celiac or at worst wheat intolerant. I think you answered your own question...now the problem is whether to purse a second opinion/test.....in order to make a re-test accurate you have to eat the gluten (as Carla stated) in order to get your anti-body levels high enough to be found on the test.

You might not feel ill by eating gluten but if you have celiac or are intolerant I'll catch up with you one way or another.

If you want to be re-tested, then make up your mind when you are starting the gluten diet and then definitely get the blood test -- don't eat gluten, then change your mind, then change your mind again and go back and forth as you'll affect the test resuts. Focus on eating the gluten for however many weeks/months it takes -- get tested -- then upon finding out the results make your final determination if you need to stay gluten-free or not.

Best wishes.

Deb

jerseyangel Proficient
jerseyangel
Posted

Hi,

I'm thinking if you tested borderline high, and had been gluten-free for a few weeks beforehand, that's a positive result.

Celiac can wane during the teenage years, and become symptomatic again as you go through your 20's. I can see how tempting it is to eat whatever you want, as you're not presently having symptoms. That, however, dosen't mean that your intestine isn't being damaged.

To avoid complications in the future, I think you should remain gluten-free.

cruelshoes Enthusiast
cruelshoes
Posted
Hi. I'm new here, but have been mostly gluten free for 5 years now.

My question is, when I was tested (blood test) for celiac disease (at age 13), I had not been eating any wheat for several weeks prior to. I didn't realize at the time that that made a difference. My symptoms were rather mild and I was only tested because my dad had tested positive. So my parents decided it was best for me to stay gluten free. So fast forward to just recently, I local restaurant got in a new item, which I checked out and loved. It had modified food starch. I never got sick and I ate the several times before I remembered to check out the MFS further. Turns out it was Wheat. So, being the adventurous 18 year old I am, I started eating other things with wheat in them. I'm feeling fine! no symptoms at all. I've started eating a tiny bit daily the last few weeks and I can't notice any difference.

So what I'm getting at is- should I be retested? or just eat as long as I don't go overboard?

Thanks for any advice you can offer!

Borderline positive is positive in my book. We just had an appointment with the pediatric GI doctor this week. We discussed this very issue. He said it is nearly impossible to get a false positive on the celiac bloodwork. False negative maybe, but a false positive, no. It's like being a little bit pregnant. ;)

Very ofter, teenagers experience what is known as a "honeymoon period". The hormones coursing through our bodies during puberty can make the celiac symptoms seem to go away. The internal damage is still continuing, but the symptoms go away. No symptoms does not mean no damage. When my son was diagnosed at age 6 he had no symptoms. We screened him as a first degree relative after I was diagnosed. He had no symptoms, but his bloodwork numbers were as high as mine were, and he had severe damage in his intestines. I was near death, but he seemed to be fine. Outward symptoms do not equate to internal damage.

What do your parents say abut the matter?

CarlaB Enthusiast
CarlaB
Posted
they said the results showed borderline positive.... any idea what that means?

If you had borderline positive while gluten-free or gluten-lite, then I'd say you have celiac.

I don't think there is such a thing as borderline positive ... I think it's more like a pregnancy test ... it's either positive or negative. :)

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. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    2. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    4. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    5. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,347
    • Most Online (within 30 mins)
      7,748
    Carla Mort
    Newest Member
    Carla Mort
    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

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • 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.