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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

    5. - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748

    Jenny0384
    Newest Member
    Jenny0384
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.