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

All My Levels Are Okay?


hlm34

Recommended Posts

hlm34 Apprentice

question from a newbie - I was diagnosed with Celiac two weeks ago. My blood test and endoscopy both tested positive for it. I had relatively few symptoms - though my doctor suspected that the celiacs had been active for quite awhile and that "i had probably not been absorbing any nutrients for awhile now". At that time they did a bone density scan and blood work again at that time. My bone density scan shows i have Osteopina (sp?) - though i just got a phone call that my blood work shows that all my calcium levels, vitamin and mineral levels were in the normal range. Now at the time of the tests - i was NOT gluten free - i had pasta the night before! So my question is this - if I am pretty much asymptomatic, from what I understand, the real danger of celiac is that my body is not absorbing any nutrients or vitamins or minerals - but if my blood test shows that they were all in the normal range - what is the real danger here??? am i making any sense? I know that lots of people have very terrible symptoms associated with Celiac - luckily i do not - but i just cant understand why my blood tests came out normal! and how do i have normal levels of calcium but not normal bone density?? if I am absorbing vitamins and not having any other symptoms - then why would i continue on the gluten-free diet?? any guidance that someone could give me would be much appreciated - i am just trying to understand it all - i am sure i am missing something here.


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

The potential for developing certain cancers and other autoimmune diseases is higher in people who don't follow the diet. In addition, if you've tested positive in the biopsy, that means damage is definitely being done and if you continue eating gluten it will almost certainly catch up with you. I was pretty much feeling normal (and I bet my blood levels would have been pretty normal) until just shortly before I ended up in the hospital for 11 days and off work for 10 weeks because of undiagnosed celiac.

richard

mommida Enthusiast

Your bone density has been affected. Your body has been deficient enough in calcium, for it to start demineralization of your bones. That is why an "asymptomatic" symptom is bone pain. Your lucky the damage to your body can stop, before you even noticed symptoms.

I know it can seem overwhelming at first. You are changing your lifestyle, by changing your diet. I'm not sure of your age, but you are stronger than Celiac.

Laura

RiceGuy Collaborator

As noted by lovegrov, the danger is far worse than malnutrition, which in itself can and almost certainly will lead to all sorts of other diseases/problems. If you do not maintain a gluten-free diet, you'll end up with problems down the line. Being totally gluten-free is not something you can do just when it's convenient. The damage will continue, as it had with myself and so many others. Consider yourself one of the lucky few to have relatively little symptoms, but gluten intolerance means your immune system will destroy your gut if you keep eating gluten. It's just a matter of time. Then the malnutrition will progress until you do notice it readily, but by then you'll be far worse off for having ignored it.

To address the calcium level/bone density, remember that the ONLY place in the body which stores calcium is the bones. Your system will pull calcium from the bones as it needs it, so your levels can be normal, while your bones are being depleted. The malnutrition can prevent the body from obtaining the necessary amount of calcium, so over time you'd probably develope serious bone/teeth problems. It's like a car with an electrical problem that prevents the battery from recharging. Eventually the battery runs down, and...

So yes, eating the pasta was a bad idea. It doesn't matter if you don't notice the effects right now.

hlm34 Apprentice

thanks everyone. that helps. It has been two weeks since i found out that i had celiac and i have been gluten-free the whole time. No cheating - not once. It took two weeks for my blood tests to get here - and so as you can tell, i was confused by the results. I ate the pasta the night before i knew i had the disease. i guess it was a last hurrah if you will. But i definitely plan on sticking with the gluten-free diet. i just needed some clarification. Thanks a bunch. I feel better hearing things from "real" people - as opposed to just my doctor on the other end of the telephone!

RiceGuy Collaborator

Glad we could help.

Here's some additional info on calcium. As I have mentioned in other threads, consuming meat based proteins can lead to more calcium loss than plant based proteins. It is important to understand how calcium absorption works, especially when malabsorption is a factor. Open Original Shared Link

That site also has good info on obtaining other nutrients as well, including protein. The basic recommendation is a balanced diet, which doesn't mean you must drink milk for calcium or eat meat for protein. The beef and dairy industries have done a lot to convince the public to consume their products.

jenvan Collaborator

hey girl! everyone's bodies respond differently... i have had celiac for years...but aside for anemia, my vitamin levels were normal. (at least the ones i had tested). so, its not too out of the ordinary. and it doesn't mean you have a 'lesser' version of the disease. your dangers are the same as the rest of us--potential shorter life span (yes!), cancer (and intestinal lymphomas have a very low recovery/survival rate), other autoimmune diseases and eventually just generally not feeling well!

did your doc talk to you about options for treating your osteopenia? my mom had it. some docs may try and tell you to go on meds such as fosamax...but my rec is to not do so. since it is osteopenia and you are young, the drug will actually freeze your bone mass, so to speak, thereby freezing depletion, however it can also stop your chances of increasing your bone mass. instead of drugs initially, you can try other things to increase mass, limit alcohol and caffeine (which can deplete bones), start doing weight bearing exercises and begin taking a calcium supplement every day, if you aren't. docs wanted to put my mom on fosomax, she is in her 50s, and she refused. they told her she wouldn't reclaim any bone mass, esp. at her age...BUT she has been working out, lifting weights, taking a supplement, and has increased her bone mass, and is testing okay now. so, it can be done... there's my treatise on bones!! some info on osteopenia for you:

Open Original Shared Link

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

oh, and just saw this article too...https://www.celiac.com/st_prod.html?p_prodid=1262

neuropathy is also a possibility for untreated celiac.

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. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

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

      My only proof

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

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748

    Susan Marble
    Newest Member
    Susan Marble
    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

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
×
×
  • 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.