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

Just Venting (Long)


Celtic Queen

Recommended Posts

Celtic Queen Explorer

Ugh, I just need to get this out there to some people who understand.  I have been gluten free for 2 years and I think that has resolved some of my issues, but I suspect that some other health issues have come to the forefront now.  I've been dealing with this off and on for about 6 months.

 

I love my GP.  She is a wonderful, kind, caring doctor.  But she's not understanding what's wrong with me.  I tell her that I'm tired all the time and can barely get up out of bed in the morning.  She wants to describe another anti-depressant for me.  I tell her that I feel like my metabolism is crawling after I get glutened, and she prescribes a stimulant for me.  She wants me to lose weight, and I do too, but I want to figure out what's going on with my body first.  There is something wrong with me and pushing another pill at me isn't going to fix it.

 

So I decided to visit a Naturopath that a friend recommended.  He has his MD but practices integrative medicine.  I called to make an appointment and their next new patient appointment isn't until April!  Yes, April.  I'm so frustrated.  There's are two other clinics in town - one with an MD on staff one one with just a naturopath - but I don't know anyone who has been to either.  And all the reviews on this first guy are awesome. 

 

Of course insurance won't pay for any of this, so it will all be out of my pocket and will likely cost $1,000 or more.  If I'm spending that much money, I want to make sure I go to someone good and that I get the help I need.  But I don't want to keep feeling like crap until April.

 

On top of all this, DS has been undergoing ADD testing for the past month.  He finally got all the testing done and we can't get into his psychologist until the end of next month.  So there's another month of school gone by without him having either medicine or a plan in place.  And the school can't finish his IEP until the doctor is done with his paperwork.  And, I'm going to get him genetically tested for the Celiac genes, but was waiting until we had to go back to the pediatrician to get him on the ADD medicine to have it cheek swab done at the same time.  I have high deductible insurance so each time I walk in her door it costs me $145, hence the need to combine stuff into one visit.  So I have to wait on that too.

 

I'm not normally a hypochondriac but I keep searching the web to find out what's wrong with me.  And I keep coming up with a variety of possible things - thyroid issues, histamine intolerance, other food intolerances, adrenal fatigue.  I want to find out which of these things are causing my issues so that I can start feeling better.

 

It's just frustrating because I feel like I'm stuck in limbo, waiting on other people.  Anyway, thanks for listening to my pity party. 


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



Celiac.com Sponsor (A8-M):



notme Experienced

rant ahoy!  lolz 

 

can you get on a waiting list?  sometimes doctors will get cancellations and you can get in earlier. 

Celtic Queen Explorer

I am on the waiting list and the receptionist said they sometimes have cancellations, but she can't say for sure if they will.  If I hadn't heard such good things about this guy, I would go find someone else.  But my options are really limited and he seems like the best NP in town.

notme Experienced

maybe you will get lucky - you do have the luck of the irish going for you ;)

bartfull Rising Star

While you're waiting at least you can test out the "other intolerances" theory. Do an elimination diet. Ditch all of the common foods that cause intolerances like corn, soy, nightshades, dairy, and whatever else you suspect. I'm not familiar with high histamine foods, but salicylates are another one that can cause problems. Get your diet down to the very basics and maybe only try one new food a month so you'll have time to see if you start feeling better.

 

I hope things improve for you soon. ((((HUGS))))

GFinDC Veteran

Somebody posted a link for online medical tests you can order yourself without a doctors involvement a while back.  If you can find a  lab to do them for you, they might be less expensive and you wouldn't have to wait.  You could get thyroid testing done for instance.  I don't remember the lab name but someone else may.

Celtic Queen Explorer

Thanks for the ideas everyone.  I didn't respond earlier because I was sick all weekend with a horrible headache.  I'm going back to basics and doing an elimination diet and keeping a food journal.  I started both a while back but the lack of energy makes it hard for me to stick to it.  I've determined I'm going to this time.


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



Celiac.com Sponsor (A8-M):



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.