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All My Levels Are Okay?


hlm34

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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.


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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


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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.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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