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

Doctors

natalieb

By natalieb
in Doctors

Recommended Posts

natalieb Rookie
natalieb
Posted

I am 39 years old and suffered from undiagnosed celiac disease for 6 years. I finally got a good doc in pittsburgh who was able to dianose what my other gi doc couldn't do in 6 years. The problem is that I have soem nerve damage due to this disease. My gi doc recommended that I see a neurologist but he didn't give me a name. Needless to say, I found someone on my own and went to him today. It was a joke. You see, 4 years ago, I had a ct of my brain and there was calcification on my brain stem. Now that I know what is wrong with me I take no ones word. Due to the vision problems I have occasionally and the numbness on my left side (arm and leg at times), I wondered if all of this could be tied togehter. I stumbled across some research linking calcification of the brain and celiac disease. This doc today clearly knew nothing about celiac disease and the neurological effects of it. He is going to get my old ct scan of my brain and review it. That is, after he is done fighting with his contractor on the phone in his high glitz office in pittsburgh. I could clearly tell that he knew nothing about celiac. Can anyone recom. me to a neurologist that is knowledgeable with the effects of celiac disease or even knows what it is? I feel like I did 6 years ago when no-one believed in the medical profession that anything was wrong with me other than irritable bowel. Help please. natalie

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

Celiac.com Sponsor (A8-M):


AntiGluten Rookie
AntiGluten
Posted

Sorry, I dont know of any doctors. But one thing I've definately learned from having this disease is that most doctors are idiots. They think they know everything and that whatever they say can't be wrong. It makes me mad that medical schools in this country tell these people that celiac is so rare that no one that comes into your office can possibly have it. Luckily I had a good doctor that keeps up with current research and tested me the first time I saw him. That is very rare with this disease. I think its a conspiracy of the prescription drug companies that keep this disease hush hush because it's misdiagnosed for so many things such as IBS that a magical little pill made and sold by these companies will make alll better. If the patient is told the truth and that all they have to do is simply change their diet then the drug co.'s lose a sale.

angel-jd1 Community Regular
angel-jd1
Posted

has anybody seen the commercial for that new drug Zelnorm. It is for women with IBS. It totally lists symptoms of celiac and then tells people to go get Zelnorm!! What a crock!!

Just my opinion!

-Jessica :rolleyes:

Guest jhmom
Guest jhmom
Posted

Zelnorm is for IBS with constipation well I called my regular doctor and her nurse told me they give it to their patients that have diarrhea!!!! Can you believe that? My GASTRO doc said that was a NO NO! Talking about clueless!

Also while reading online about IBS it stated that when IBS patients started a gluten-free diet, they improved WELL I WONDER WHY?

  • 1 month later...
Wish Newbie
Wish
Posted

I'm sorry to say that I don't know of a good neurologist. However, I'm from Pittsburgh as well and I'm not sure if you know this or not, but there's a great support group in the area. If you're not involved with the group yet and are interested, just e-mail me and I'll give you the contact information. I'm sorry you're having such horrible experiences with the medical community and I hope someone comes through with the information you need.

~Marie

Archived

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

Go to topic listing

  • 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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    3. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    5. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
×
×
  • 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.