Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Help! I Need A Real Dr. Who Knows About This! Ma

Squeak1209

By Squeak1209
in Doctors

Recommended Posts

Squeak1209 Newbie
Squeak1209
Posted

I went on a gluten-free diet about 8 months ago and have been feeling great ever since. I've read up on celiac and even had my general physician take a blood test. She said the results were normal, I stupidly did not have her send me copies of the results to check for myself (and after reading posts, I feel I should have every result)! I've also recently realized that dairy makes me just as sick as gluten, so am trying to go dairy free (but I so love ice cream in 90 degree weather). I have noticed new symptoms over the past few months. My toe on my right foot has gone completely numb, with no explanation. I am very dizzy, tired, my thighs ache just walking up the stairs (mind you I am a very active person, and exercise regularly). If I stoop to pick up my neice, I get reallly dizzy, and see black and white spots in my vision. Sometimes the dizziness and spots are so bad I have to touch a wall to steady myself. I have become unsteady on my feet and very clumsy. I almost feel like I'm not getting enough oxygen to parts of my body and am wondering if this could be vitamin deficiency?

The dr. I currently have is (to be nice), not very well versed in celiac or gluten intolerance. I'm not even sure I have celiac, but I need a Dr. who knows this stuff as well as anyone can. I need help. I feel much better cutting dairy, gluten, nuts, and any processed food out of my diet, but am afraid that I may also be inadvertantly cutting out necessary vitamins and minerals unknowingly. I used to take a woman's multi-vitamin but it makes me sick to my stomach (even if I take it at night). I feel like I could be on the right track with cutting out the stuff that makes me sick, but I need a Dr. who can help me and tell me what veggies and fruits and meats I should be eating to keep myself healthy.

I live in Massachusetts, outside of Worcester. Someone please help, if you know a Dr. in the area that could help me, please let me know. I'm literally sick and tired of being sick and tired.

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

Celiac.com Sponsor (A8-M):


Sarah1122 Newbie
Sarah1122
Posted

Your experience sounds so similar to mine! I have been gluten free since my diagnosis in March 2010 - like you, I found that my PCP and the GI that diagnosed me were very nice, but not helpful after the diagnosis. They are baffled that I wanted tests ran, to determine where my health is at now, after what I believe to be 10 years undiagnosed.

Like you, I also have numbness and tingling

  • 3 weeks later...
Bennie Rookie
Bennie
Posted

ratemds.com is a good place to review doctors as well if you aren't sure where to start.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,749
    • Most Online (within 30 mins)
      7,748
    Susan Ughy
    Newest Member
    Susan Ughy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Any bad experience with King Arthur Gluten-free bread flour

      By Scott Adams · Posted

      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Still unsure.....

      By Wheatwacked · Posted

      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
    • RMJ
      Any bad experience with King Arthur Gluten-free bread flour

      By RMJ · Posted

      Not all of King Arthur’s gluten free flours and baking mixes are certified gluten free. This bread flour is not. 
    • knitty kitty
      Still unsure.....

      By knitty kitty · Posted

      Bump up your thiamine dose!  You can take more if you don't feel anything after the first one.  Must needs getting to that 500mg. We need more thiamine when we're fighting an infection.  Zinc will help fight infections, too, as well as Vitamin C. They all work together. Hope you feel better!
    • knitty kitty
      Inflammation and Menier’s disease link?

      By knitty kitty · Posted

      Welcome to the forum, @MagsM, I had Meniere's.  Meniere's is caused by deficiencies in Thiamine, Niacin, and Vitamin D.  Celiac Disease causes malabsorption which affects all the essential vitamins and minerals. The B vitamins work in concert together like an orchestra.  Having a Folate deficiency suggests other B vitamin deficiencies as well.  Folate needs Pyridoxine B6 and Thiamine B1 to work properly with Cobalamine B12.  Doctors are not required to take many courses in nutrition, and often don't recognize deficiency symptoms or how to correct them.  Blood tests are not an accurate measurement of vitamin deficiencies inside cells.  Low iron correction requires copper and zinc as well as Thiamine and Riboflavin.    Yes, anemia can affect the production of antibodies and cause false negatives on tests for Celiac.  Diabetes and Thiamine deficiency can also cause false negatives.  An endoscopy with biopsy would be a more accurate method of diagnosis for you.   I studied Nutrition before earning a degree in Microbiology because I wanted to know what the vitamins were doing inside the body.  Vitamins are chemical compounds that the body cannot make, so we must get them from food and supplements.  After a few vertigo episodes and suddenly going deaf for a while, I researched and found that supplementing with  Thiamine in the form TTFD (tetrahydrofurfuryl disulfide), Niacin and Vitamin D resolved the issue.   Please ask your nutritionist for further vitamin deficiency tests.  A B Complex, TTFD, Vitamin D should help you recover quickly.   Keep us posted on your progress!
×
×
  • Create New...