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

Self Diagnosed Denial


ndw3363

Recommended Posts

ndw3363 Contributor

After much internet research, I decided to go gluten-free about a month ago. I'm very sure that I have DH (biopsy came back "inconclusive", but she took it from the wrong spot) and my gasto sypmtoms were never severe. However, since going gluten-free, my digestive system has never been happier which tells me I was right. My brain fog is starting to lift and I have a bit more energy (have a hard time getting up in the morning, but I think that's because I'm finally sleeping well and I don't want it to end). :D

My problem now is that since I'm feeling sooo much better, that annoying voice in the back of my head is telling me it was all made up and that I don't have to live gluten-free for life. Without an acutual diagnosis, my dumb head just wants to believe it's all temporary. I know that it's not, but it's hard to get past this "denial" period. I also know that in order to get a firm diagnosis, the tests have to be run while still consuming gluten. There is no way I want to go through the withdrawal again - or put something toxic in my system just to get the "official" diagnosis. All I really want to do is throw myself on the floor and have a 5 year old temper tantrum :angry:


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

All I really want to do is throw myself on the floor and have a 5 year old temper tantrum :angry:

Go ahead and stomp around a bit and scream into a pillow, unless you live in the country and have no neighbors then you can drop the pillow. :D

If you are like most of us you will be accidentally glutened in the future and you may find that is enough impetous to remain gluten free. As you said the only thing you can do to get that 'firm diagnosis' is to resicken yourself and even then you may have a false negative. Your not the only one to have those feelings and you will get through them.

koolsharkz Newbie

First of all, congratulations! It's great that you are feeling so much better :)

I'm the same exact way, the second I discontinue eating gluten things get so much better, gastrointestinally and neurologically. But I still wonder if my brain is tricking me sometimes. Do I feel better not eating gluten because I expect to feel better? I don't know, but it bothers me all the time. I've been trying to reframe it a bit in my mind... instead of looking at it as a medical problem (although I acknowledge that it most certainly is one), I look at it as something my body just doesn't like. Just like I hate the taste of capers, my body hates the "taste" of gluten. And since I don't eat food I don't like, it would be unfair to force my body to eat the foods it doesn't like... so I have to focus on finding foods we both like! Thinking of it like that helped me feel a lot better about the impossibility of any diagnosis (because it would be impossible for any blood test to tell me what my body really likes, right?). Maybe it could help you too :)

Best of luck, I hope you continue to feel wonderful!

-Emily

ndw3363 Contributor

Thanks Emily - that's a really great way of thinking of it! I hate bananas so I don't eat them - but I'm sure my body would love one. My system hates real pizza, so I guess I'll have to listen.

I'll just have a glass of wine to make it all better!! :-)

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.