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

Doctor?


TiffersAnn

Recommended Posts

TiffersAnn Apprentice

I am a 27 year old self-diagnosed person with Celiac... only because I can't find a doctor to even give me the proper test. My mother moved to Cincinnati 6 years ago and in the first week she was there, she was diagnosed with Celiac. She had kidney failure, severe weight loss, diverticulitis, and several other severe problems. My sister was then tested positive as well. I lived in denial for 5 years after this discovery because I didn't want to face the fact that I'd have to change my entire lifestyle. A year ago, I started getting more and more reactions to gluten... and I paniced. I called every doctor in the area and either they wouldn't take me, had no idea what it was, or told me that I'd "have to go to where my mother was diagnosed". One doctor even told me that "sure we'll do a skin patch to test you for an allergic reaction to gluten..." It was after that call that I gave up.

I've been gluten-free since October '05...

I guess my question to everybody is... Should I still keep looking for a doctor that will test me properly? I realize that I'd have to eat gluten again for the test.


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



Celiac.com Sponsor (A8-M):



Guhlia Rising Star

If you feel better on the gluten-free diet, then there's your diagnosis. Tests are faulty and often give false negatives. Why go through the gluten challenge if you don't have to?

Ursa Major Collaborator

After being gluten free for eight months, you might have to be back on gluten for possibly a year or more, before you would test positive. Meaning, you'd first have to destroy your villi again and get sick. Is it worth it? With your mother and sister having a positive diagnosis, and feeling much better gluten free, you really know you have celiac disease, don't you? So, just leave it at that, who needs the aggravation with doctors, anyway? Not to mention the expense.

Just my opinion, of course, it's entirely your choice, nobody can make your decisions for you.

TiffersAnn Apprentice
After being gluten free for eight months, you might have to be back on gluten for possibly a year or more, before you would test positive. Meaning, you'd first have to destroy your villi again and get sick. Is it worth it? With your mother and sister having a positive diagnosis, and feeling much better gluten free, you really know you have celiac disease, don't you? So, just leave it at that, who needs the aggravation with doctors, anyway? Not to mention the expense.

Just my opinion, of course, it's entirely your choice, nobody can make your decisions for you.

Thats true, I guess. I'm just trying to deal with everything. That peice of paperwork might just kick my butt into gear. I live in an area that there are no 'special' markets, no gluten free menus (except Outback), no one has ever heard of it (including my family doctor)... It's very difficult. Thank goodness I enjoy to cook.

Guhlia Rising Star

Go to www.enterolab.com. The tests are a little more expensive as you have to pay out of pocket, but they boast that they're accurate even when you're gluten free.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,141
    • Most Online (within 30 mins)
      7,748

    smkatin
    Newest Member
    smkatin
    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

    • 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.  
    • Sarah Grace
      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.