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

Deficiencies - Doctors Appt.


AmandaD

Recommended Posts

AmandaD Community Regular

Hi again - Just returned from a regular general practitioner appointment where we we discussing my new Celiac status. I made mention that I'm feeling quite anxious about the whole process and that it's quite a life change. I also mentioned I'd been feeling like my muscles were twitching or that I would try to relax and I feel all trembly...like I was either having anxiety or dehydrated....

He said he was sure I had a calcium/magnesium or electrolyte deficiency and that I need to be on a good supplement (I'm also still nursing a baby and he said that can make the problem worse). He said that my body is probably not absorbing nutrients correctly.

Have any of you had experience with this or give me some advice? This doc also mention he hadn't seen a "sprue" in years. I felt totally weird when he said that!!!

Any advice would be really appreciated.


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



Celiac.com Sponsor (A8-M):



kvogt Rookie

First, I'd find a doc who has seen a sprue twice this week.

Second, you aren't absorbing vitamins and minerals very well. You should take a daily vitamin (choose carefully) and probably additional vitamins for nursing mothers.

AmandaD Community Regular

Thank you for that advice. I think I'm going to hang on tight to my gastroenterologist and only discuss Celiac with her. After that appt. and post I called my gastro office and left a message with the nurse about what my g.p. had said. The nurse said she didn't know exact amounts of supplementation and that she'd call me back.

This doctor said he hadn't seen celiac in almost 30 years. I was totally, totally stunned. And kind of pissed too, if I'm allowed to say that...

First, I'd find a doc who has seen a sprue twice this week.

Second, you aren't absorbing vitamins and minerals very well.  You should take a daily vitamin (choose carefully) and probably additional vitamins for nursing mothers.

<{POST_SNAPBACK}>

nettiebeads Apprentice
This doctor said he hadn't seen celiac in almost 30 years. I was totally, totally stunned. And kind of pissed too, if I'm allowed to say that...

<{POST_SNAPBACK}>

You're allowed to say anything you want here. ( Except the s**t word which automatically gets transposed to poop) If your doc hasn't seen celiac disease in 30 years I doubt he's been looking very hard. 1 out of 133 is est. to have it now.

luvs2eat Collaborator

And I'm thinking that the 1 in 333 will soon be 1 in way less than 333. It seems more cases are diagnosed every day... just look at the membership on this board! It astounds me how many new folks come every day with a brand new diagnosis.

  • 1 month later...
kelliac Rookie
This doctor said he hadn't seen celiac in almost 30 years. I was totally, totally stunned. And kind of pissed too, if I'm allowed to say that...

<{POST_SNAPBACK}>

Oh, they've seen it, they just didn't recognize it!

Ursa Major Collaborator
Oh, they've seen it, they just didn't recognize it!

<{POST_SNAPBACK}>

Yeah, like my doctor, who told me yesterday (after I told her I self-diagnosed myself with Celiac, and what an astounding difference the diet is making), that she knew I had all the symptoms, but she thought that it couldn't be Celiac, because I was gaining weight instead of losing it! And so she tested for everything under the sun, with the exception of celiac disease. :angry: And I was desperately ill all summer as a result of her ignorance.

But she knows now, our consultation turned into an information session for HER.


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



Celiac.com Sponsor (A8-M):



ryebaby0 Enthusiast

He said he was sure I had a calcium/magnesium or electrolyte deficiency and that I need to be on a good supplement (I'm also still nursing a baby and he said that can make the problem worse). He said that my body is probably not absorbing nutrients correctly.

Well, he's absolutely right. Think of your GI system as a carpet, but the damaged glutenated pieces as where the carpet has worn straight thru to the wood floor. If you spilled water, is the floor gonna absorb anything? Definitely take a multi!!

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

      Are Lindt chocolate balls gluten free?

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

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,411
    • Most Online (within 30 mins)
      7,748

    Rebekah1922
    Newest Member
    Rebekah1922
    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
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.