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All My Levels Are Okay?

hlm34

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hlm34 Apprentice
hlm34
Posted

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
lovegrov
Posted

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

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mommida Enthusiast
mommida
Posted

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

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RiceGuy Collaborator
RiceGuy
Posted

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.

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hlm34 Apprentice
hlm34
  • Author
Posted

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!

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RiceGuy Collaborator
RiceGuy
Posted

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.

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jenvan Collaborator
jenvan
Posted

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
jenvan
Posted

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
      Waiting for urgent referral.

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      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
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    • Fluka66
      Waiting for urgent referral.

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      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

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      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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