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

Has Anyone Experienced This?


Mime

Recommended Posts

Mime Newbie

First let me say, I am so glad you guys are out there. I have to start going to bed though. I stayed up last night reading the posts, trying to educate myself with this newly discovered disease. Let me start off by telling you my 20 yr old daughter is waiting for Enterolab testing results. (She had neg. blood tests last week.) In Jan. '06, she began a vigorous health regimen including eating only whole grains, specifically whole wheat, lower fat, lots of water, fresh veggies and fruit, no/extremely low sugar, and exercise. By the end of the month, abd. pain, bloating & gas began but the connection with food was never considered. This began the 9 months of doctor visits, tests, ER visits with still no diagnosis. We have been to 7 different specialists and Celiac was NEVER mentioned. I found the disease 2 wks ago on-line and put two and two together. Other symptoms include: Lost 32 lbs during the last 10 weeks while eating constantly and still feeling hungry, hair loss, missed periods, abd pain, rash on top of hands, floating stool, sore muscles, headaches.....The minute I called her and told her about Celiac-she threw out all the food in her dorm. She has been eating gluten-free for the past 12 days. Her symptoms began to improve after 2 days. Her abd pain stopped, she was still feeling hungry but no pain, bloating stopped, still a little gas, rash is still there, no headaches or sore muscles. My concern now is she has developed pain???or pressure-like pain at the base of her head (brainstem area) for the past 4 days and it is getting worse. At first we thought it might be like withdraw due to going gluten-free. But not being near her, I am concerned. No fever or vomiting. Have any of you recovering Celiacs or Gluten Freebies experienced this kind of symptom? She has a doctors appt tomorrow (Friday) with her family doc. I hate not knowing how to help her and having to just "wait and see".

Please let me know if you have any info.


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



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

Welcome to the forum. You've come to the right place. Your daughter is so lucky to have such an on-the-ball mom! Way to go! It sounds like you've found the answer - hope the Enterolab results confirm it.

I can't remember if I ever had pain where you describe - it's been over 10 years since cutting wheat and most gluten out of my diet. Hopefully someone else will be able to address it.

Please stick around and ask questions - lots of people here are willing to help.

Guest nini

she very well could be experiencing withdrawal symptoms. Those are not fun at all, but it will pass. She may also benefit from seeing a chiropractor. Regardless of what any test results say, it sounds like you've already figured out what the issue is and hopefully the tests will confirm it for you. Unfortunately still too many Dr.s are not well educated about gluten intolerance/celiac and many will refuse to accept that it is even a possibility because they are taught in med school that it it soooooo rare they will probably never see it. That's not true, recent studies have indicated it is way more common than previously thought.

Good for you mom, and here's hoping she gets feeling much better very very quickly.

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

    2. - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

    3. - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

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

    • Total Members
      132,750
    • Most Online (within 30 mins)
      7,748

    Celiac Daughter
    Newest Member
    Celiac Daughter
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
    • olivia11
      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
×
×
  • 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.