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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.