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

Help! Need Positive Blood Work For Doctors Note


tiffjake

Recommended Posts

tiffjake Enthusiast

I have a Dr.'s appt on Thursday, and it just occured to me that if I want my panel to be positive, then I need to be eating gluten! Hello! Duh! So will eating gluteny food between now and then be enough for a positive panel? I think so, but I am getting conflicting reports from others, please advise!!!

(Doing the mini-gluten-challenge for things like work and sea world that want a "doctors note" to allow you to bring your own food....and since my regular doc botched the tests and had to retest me after one month gluten free, my tests were "inconclusive" but he labeled me "gluten intolerant" based on the lack of meds that I needed and the food journal/health changes he witnessed. That office messes up lots of stuff.....going to a different doc this time.....)


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Um, Tiffany, I hate to tell you this, but you need to eat gluten for several MONTHS in order to maybe get a positive test result. So, don't bother eating gluten now, you'll just get sick for no reason. There is no point in getting tested this week, cancel if you still can.

Find a doctor who will give the the note based on your positive enterolab tests, and your positive response to the diet.

tiffjake Enthusiast
Um, Tiffany, I hate to tell you this, but you need to eat gluten for several MONTHS in order to maybe get a positive test result. So, don't bother eating gluten now, you'll just get sick for no reason. There is no point in getting tested this week, cancel if you still can.

Find a doctor who will give the the note based on your positive enterolab tests, and your positive response to the diet.

So why were the levels lower after only a month gluten-free? I thought the blood would be faster-acting since my levels went down between the EnteroLab and the doctors-botched-blood test 4 weeks later......

tarnalberry Community Regular

Results on a blood test may go down after a month gluten free, but you can't be sure that they'll be high enough to register as a positive after only three days back on gluten. The general advice is three slices of bread a day for three months.

tiffjake Enthusiast
Results on a blood test may go down after a month gluten free, but you can't be sure that they'll be high enough to register as a positive after only three days back on gluten. The general advice is three slices of bread a day for three months.

Well screw this! I have been sick all day and I am not going to do it anymore! Ug! No note for me I guess! Because I am not going to spend another hour in the bathroom! I am ONE DAY into my mini-challenge and I am tired of looking at the bathroom wall! I have spent three hours in the bathroom today!!!!! Not to mention the nausea, bloating (I have gained 5 pounds in 10 hours!), the stomach pains, gas, brain fog, tiredness, and severe thirst (I could drink a pool right now!). I am SO not going to do this!!!!!!!!!

Guest nini

yeah, you don't need to do that to yourself... and 3 days is def. not enough time... get a Dr. to write you a note calling it gluten intolerance or whatever but don't put yourself through torture for a test that probably will be skewed anyway.

my daughter has a Dr.s note on file at her school that calls it Gluten Intolerance and that is good enough. Treatment for G.I. is the same as Celiac so don't torture yourself further.

celiacgirls Apprentice

I haven't needed a note yet for any reason but I am thinking I would just show a copy of the results from Enterolab. It says " it is recommended that you follow a strict and permanent gluten free diet." Is there any reason that wouldn't work? Dr. Fine might be willing to send you a signed letter instead of that e-mail.

I am new to this so maybe I am just naive to think that they would accept that letter.


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



Celiac.com Sponsor (A8-M):



penguin Community Regular

Well, I know Tiffany is going to a good doctor, because she's going to my doctor :)

Now, knowing her, she'll probably look at the results and your dietary response and dx you celiac. At least gluten intolerance. I'm not sure she even sees them as different. I didn't even have enterolab done and she dx'ed me on dietary response and a high IgG alone. I wouldn't be surprised if she gives you a note. Make sure you talk to her a lot first, though B)

I would be surprised if she told you to eat wheat again to be retested if it's making you sick.

She has a duh approach along the lines of, "if it hurts when you poke it, don't poke!" :)

Nancym Enthusiast

I wonder if Dr. Fine would write a note for you?

Rachel--24 Collaborator
So why were the levels lower after only a month gluten-free? I thought the blood would be faster-acting since my levels went down between the EnteroLab and the doctors-botched-blood test 4 weeks later......

Actually, its slower to show up in the blood. It would take months to show up in the blood. The reason your bloodtest showed numbers lower than Enterolab is because they are 2 different tests. Enterolab is more sensitive and picks up antibodies in stool long after you've been gluten-free. The antibodies will remain present in stool up to a year after you've been on the diet. If you retested with Enterolab today you're numbers would most likely still be positive and they would be higher than the bloodtest you took.

2Boys4Me Enthusiast
(Doing the mini-gluten-challenge for things like work and sea world that want a "doctors note" to allow you to bring your own food

What the??? We're planning a trip to Disneyland, and then south to Sea World and all that stuff. Did they say you couldn't bring your own food? We'll be taking food...try to stop me! Of course, I have the advantage of the gluten-free boy being able to turn on the little pouty teary face to encourage them to allow the food in :ph34r: . If they don't have allergen-free, diabetic, gluten-free, whatever food, then too damn bad for them. They lose the $15 profit on a burger or whatever :angry: .

Off my soapbox now.

tiffjake Enthusiast
What the??? We're planning a trip to Disneyland, and then south to Sea World and all that stuff. Did they say you couldn't bring your own food? We'll be taking food...try to stop me! Of course, I have the advantage of the gluten-free boy being able to turn on the little pouty teary face to encourage them to allow the food in :ph34r: . If they don't have allergen-free, diabetic, gluten-free, whatever food, then too damn bad for them. They lose the $15 profit on a burger or whatever :angry: .

Off my soapbox now.

When I called Six Flags (meant six flags, not sea world, sorry!) they said I could bring my own salad dressing or bread if I had a doctors note.....and I am going to a 4 day Seminar in Dallas, and they are "perfectly willing to accomidate me" if I have a doctors note!

Actually, its slower to show up in the blood. It would take months to show up in the blood. The reason your bloodtest showed numbers lower than Enterolab is because they are 2 different tests. Enterolab is more sensitive and picks up antibodies in stool long after you've been gluten-free. The antibodies will remain present in stool up to a year after you've been on the diet. If you retested with Enterolab today you're numbers would most likely still be positive and they would be higher than the bloodtest you took.

(NOT trying to argue with you....just wanted to ask that if this were the case, why did Enterolab say in their packtet to make sure I had eaten gluten within the last 29 days??)

Well, I know Tiffany is going to a good doctor, because she's going to my doctor :)

Now, knowing her, she'll probably look at the results and your dietary response and dx you celiac. At least gluten intolerance. I'm not sure she even sees them as different. I didn't even have enterolab done and she dx'ed me on dietary response and a high IgG alone. I wouldn't be surprised if she gives you a note. Make sure you talk to her a lot first, though B)

I would be surprised if she told you to eat wheat again to be retested if it's making you sick.

She has a duh approach along the lines of, "if it hurts when you poke it, don't poke!" :)

I hope so! I appointment is on Thursday, I will let you all know how it goes!

plantime Contributor

Seems to me a note from your original doc stating gluten intolerance should suffice. A note from a doc stating lactose intolerance would be accepted!

tiffjake Enthusiast
I wonder if Dr. Fine would write a note for you?

You know, I hadn't thought about it, because they said "A note from your Doctor" and I don't consider him my doctor. But if I don't get one on thursday, then I will ask email him about it.

It is such a pain because I feel like I need to prove this to people! I know that I get sick. The people who spend the night with me or go home with me after eating gluten know that I get sick. But servers, companies, heck-family! want some kind of proof! I can't count how many time people have asked "So will you die?" and I say "No, I won't pass out right here at the table" and they let out their breath and sigh like 'well, it isn't that serious' and I want to show them pictures of my poop!!!!!!!! Ok, I am done! Love you guys! ~Tiffany

penguin Community Regular
I can't count how many time people have asked "So will you die?" and I say "No, I won't pass out right here at the table" and they let out their breath and sigh like 'well, it isn't that serious' and I want to show them pictures of my poop!!!!!!!!

Yeah, it's that whole thing like, "well you don't look sick" or "if you've had this for a long time, how come you weren't sick all the time?"

Well, you're not with me in the bathroom, now are you? :rolleyes: I had a friend say that to me who had seen me in bed, writhing in pain, going to the emergency room, all the time.

tarnalberry Community Regular

That's why I don't talk about the condition in terms of allergies or the like, and talk about it in terms of personal responsibility and personal decision. Your friends and family can disagree with the car you decide to buy, but you still buy it because it's the car you want. Just as they can disagree with you deciding not to eat something, but you still don't eat it because you don't want to risk getting sick. That's really the end of the story.

Heck, I'd use the "What part of 'no' don't you understand? The 'n' or the 'o'?" line, if it came to that. :-)

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.