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

In Desperate Need Of Encouragement


Jai

Recommended Posts

Jai Rookie

My title says it all. I'm new here. Have been helped a lot by reading for the pat few months and finally decided to join. Here's my too-long story. I apologize in advance. I'll make it point-form!

-March randomly fainted...followed by a week of dizzy spells

-March - June continued to have random dizzy spell, felt faint, light headed, had migraine with aura for 1st time ever, caught every cold, flu, bug going around.

June got sick. Couldn't get out of bed for 2 weeks kind of sick, loss of appetite, diarrhea, fatigue, weakness, dizziness, lost 10lbs in 1 week Bad. Went to ER, found nothing, but clued in that my mom has celiac and I had the exact same symptoms that she had before diagnosis. So, did the blood test, went home and immediately went gluten-free. Took over 2 weeks for results in which time I was very slowly but also very definitely improving. Results were "inconclusive" and I postively refuse to eat gluten to do biopsy!

Digestive symptoms improved quickly, but took all summer to get any sort of strength/energy back and get rid of brain fog. Don't work in summers and it's a good thing. No way I could have worked.

End of August started back to work (home daycare) which was extremely difficult and caused me to have anxiety/ sleeping problems. I overcame it within a few weeks realizing that I can do it!

mid Sept had a set back of abdominal pain. The Dr's guess was gastritis or ulcer caused by Advil. Took about a month to finally start seeing an improvement. Again, just when I though I was overcoming that I had a major bout of diarrhea last night like I've never had in my life! Today I'm left weak, exhausted and wondering where the light at the end of the tunnel is.

In 2 weeks I'm seeing a gastro for the 1st time in all of this! Gotta love our health care system here in Canada. Don't have colon cancer, so I'm not much of a priority...as I was actually told in emerg!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board and sorry you are having such a hard time.

You mention starting up a home daycare. Do you also the kids in the day care to consume gluten in the house? If you do that may account for your setback. We even need to be careful with stuff like Playdoh and paints for the kids as those can be an issue for us.

Eat as much whole unprocessed food as you can and be careful to avoid cross contamination and hopefully you will be feeling better soon. We can have real ups and downs for a bit. Some of us will develop other intolerances with soy and dairy being the most common. If you consume either you may want to drop them for a bit and see if that helps.

Jai Rookie

Thanks. I initially eliminated dairy, and successfully reintroduced small amounts, although every time I have a setback I cut it out again. I also eliminated soy as it made my throat itchy when drinking soy milk....

The daycare eats a regular diet, and I believe that I am careful with their food and PlayDoh.....

Maybe last night was just a `fluke` who knows... I feel like it`s always a guessing game.

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. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    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

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.