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

Need Some Sort Of Proof That I Have Celiac Or Gluten Intolerance


emcmaster

Recommended Posts

emcmaster Collaborator

I missed several days of class last month due to being glutened accidentally. Because it was a one-month summer class, my grade was severely hurt by missing class, even though I told my professor why I was gone.

To prevent this in the future, he suggested I "register" my "disability" with disability services at the university so they have it on record. I went to ask them what they needed and she said she needed a letter on doctor's letterhead that explained what my "disability" was, what happened to me if it was not taken care of, what tests they performed and how they diagnosed me.

Problem is, I'm self-diagnosed due to positive dietary response. I haven't seen an MD since my self diagnosis because I'm still so angry at the medical community and the dozens upon dozens of doctors I saw over two years that not only didn't diagnose me but laughed at me when I suggested celiac as a possibility. I've seen a Naturopath since then, but Oklahoma doesn't liscense Naturopaths so I don't know if they'd take it.

What would you all recommend doing?


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
I missed several days of class last month due to being glutened accidentally. Because it was a one-month summer class, my grade was severely hurt by missing class, even though I told my professor why I was gone.

To prevent this in the future, he suggested I "register" my "disability" with disability services at the university so they have it on record. I went to ask them what they needed and she said she needed a letter on doctor's letterhead that explained what my "disability" was, what happened to me if it was not taken care of, what tests they performed and how they diagnosed me.

Problem is, I'm self-diagnosed due to positive dietary response. I haven't seen an MD since my self diagnosis because I'm still so angry at the medical community and the dozens upon dozens of doctors I saw over two years that not only didn't diagnose me but laughed at me when I suggested celiac as a possibility. I've seen a Naturopath since then, but Oklahoma doesn't liscense Naturopaths so I don't know if they'd take it.

What would you all recommend doing?

My ob/gyn told me recently that dietary response is clinical proof. You might ask around if you know any docs or have a good rapport with one (I have six kids, so I have a good rapport with my ob/gyn!! :lol: ) to see if one would write you a note based on that.

Otherwise, you can check out enterolab. www.enterolab.com. Maybe your naturopath knows a doc that would help.

snapple Apprentice

You might want to look into the possibilty that the school might accept a notarized explanation from you Naturopath. They might accept it. It is worth asking them. If you see a GP, they might be willing to sign something along the lines that patient reports improvement on gluten free diet and admit to not knowing enough about celiac disease to refute patient claims. That might be a long shot, but again just trying to brain storm.

hope this helps and good luck!

Nantzie Collaborator

I would give them whatever documentation you had, including from your naturopath. I would write a letter giving your experience with celiac and the doctors misdiagnosing you, or whatever else they did. I would also find either a news article or medical journal article that mentioned how prevalent and mis/undiagnosed celiac is at this point.

Then let the chips fall where they may.

Who knows, someone from the school's disability office might be an undiagnosed celiac, and this might be something that makes all their health problems make sense too.

Nancy

lorka150 Collaborator

Elizabeth - I went through something very similar, as I was diagnosed at a clinic and did not have access to my records (long story). Anyway, the health services at the university had four years (becasue this happened in my fourth) of referrels and tests and my appointments through them (from sleep clinics to MRIs, and so on). I had went to them for most of my ailments, and not to a family doctor at home, as I didn't have one.

Anyway, if you did something similar, could that apply? They helped me register with disability.

Hope that might help.

Guest nini

a letter from your naturopath should suffice. In a couple of cases for my daughter, (not related to Celiac) a letter from our chiropractor was enough to explain why she missed school because of illness. (I don't believe in medicating first, I always try chiropractic first and then medicine if needed)... anyway, you shouldn't be penalized for not following traditional western medicine, as long as you have a licensed health care practitioner. Naturopath, Chiropractor, (esp. if the chiro also has certification in other modalities like nutrition and NAET)

Guest cassidy

I am self diagnosed as well and needed a letter for work so I could get special food on my business trips. I went to my family doctor and told him about my changes after going on the diet and he agreed that I had celiac. He wrote the letter without a problem. I would think that any doctor would believe you at this point because you have proven how well the diet works for you.


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



Celiac.com Sponsor (A8-M):



emcmaster Collaborator

Thanks, everyone. I will try to get my NP to do it and if they say they need something from an MD, I'll go that route. :)

eleep Enthusiast

Ah-hah -- It never occured to me that I could register for a disability -- I've got Enterolab results, perhaps I could use those.

In September, I'm going to be applying for a university-based dissertation fellowship and I'm a little concerned my application may be disregarded before they even read about my project because I've been working on this degree for so dang long with a bunch of health-related interruptions. I was planning to write a letter of explanation with my lab results, but actually being registered might also be a good idea.

eleep

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. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

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

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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

    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.