Celiac Disease and Osteoporosis

The Pearl

If you are diagnosed with Celiac Disease and osteoporosis, the Celiac Disease should be treated first, 
through a strict gluten restricted diet for at least 3 months. Your physician should be sure that you have a 
restored normal level of vitamin D (which can be measured by a vitamin D 25-OH blood test) before 
considering starting treatment of your osteoporosis.  

Why? Because the medications we use to treat osteoporosis; Forteo, a bisphosphonate like Boniva, 
Fosamax, and Reclast,  or a Rank Ligand monoclonal antibody like Prolia, can lead to severe even life 
threatening low levels of circulating blood calcium (hypocalcemia). This can cause seizures, 
muscle spasms, and cardiac arrhythmias that are potentially fatal.

More Explanation

Celiac Disease is a condition that is associated with an immune overstimulation process that starts in the 
small intestine lining in response to a specific type of gluten. Gluten is a common plant protein storage 
molecule, but the particular gluten molecule produced by Wheat, Barley, and Rye are problematic for a 
small subset of genetically predisposed persons. 

How common is this? Forty percent of the population carries one or both susceptibility genes, yet less that one in a hundred persons develop Celiac Disease. In this subset, grain glutens result in inflammation throughout the body, but especially inside the lining of the small intestine. This “enteropathy” and inflammation can lead to many other problems throughout all the bodies systems.

Why is celiac disease related to osteoporosis? Inflammation excess itself can lead to damage to the 
skeletal bones through remodeling imbalances, where not enough new bone is laid down and too much 
existing bone is resorbed back into the blood stream from existing bone. Add to this the malabsorption of 
nutrients vitamins and minerals, and you have a perfect storm of risk for those who are suffering from 
Celiac Disease in developing osteoporosis.

Calcium absorption is reduced, and an acquired lactose intolerance from Celiac Disease leads to a lower 
threshold of a person to tolerate dairy products. Vitamin D is poorly absorbed from the diet through the 
inflamed intestine, and, if a person with Celiac Disease feels unwell, they are less likely to exercise or spend time outdoors in natural sunlight to make vitamin D in their skin.

What else should I know? Dental maturation and enamel, our tooth protective coatings, are reduced 
and often secondary teeth are slow or late to develop.

Over years and decades, even in those without obvious intestinal symptoms of Celiac Disease that might 
otherwise lead to a timely diagnosis, bone does not fully calcify and mature, and the bones natural 
remodeling process is in constant imbalance. Cancellous spongy bone which provides the interior bone 
scaffolding to provide bone strength and resiliency to the outer cortical bone becomes more fragile and 
brittle and less supportive. Premature or severe osteoporosis and or fracture may be the first sign that you may have Celiac Disease.

In the setting of active intestinal inflammation, dietary calcium is poorly absorbed. The body requires a 
very specific and narrow range of calcium to constantly circulate to support cells throughout the body in 
particular nerve, muscle and cardiac/heart cells. Most treatments for osteoporosis stop the body from 
recruiting the bone cells, the osteoclasts, from breaking down existing bone and releasing calcium back 
into the circulation.  In common osteoporosis, this leads to beneficial balance of bone remodeling, where 
osteoblasts create new bone and calcium deposits, while inhibiting the activity of the osteoclasts that will 
now greatly reduce their break down the bone and release of calcium stored there. If, however, your 
calcium levels drop, the body automatically absorbs more calcium from the intestines and increases the 
osteoclast activity to breakdown and release stored calcium form the bones into the blood stream. If the 
intestinal inflammation limits intestinal calcium absorption in Celiac Disease, and the osteoporosis 
medications prevent the bone from releasing calcium back into the bloodstream by their very mechanism,
it could spell a recipe for disaster.

Maximizing Your Healthcare Visits

In a perfect world, your physician would evaluate all of these things in a single visit.  An empowered patient needs to team with their doctor to maximize the completeness of each visit.  

Thanks to Rob Lambert, M.D. for the mind map

Things that you can do to maximize your visit

Winslow W. Murdoch, M.D.

Realize that you and your doctor have a limited amount of time to spend on goal setting and problem solving. Evaluating a given problem may take several visits and be done in a sequential way. Many conditions evolve over time, so even the best and brightest doctor and patient may not come up with the correct diagnosis or treatment plan at the first or even third visit. Keeping track of the "story" helps clarify and focus both parties. You will immeasurably help your doctor by relating your story in a way that they are trained to make a diagnosis. See my "History of Present Illness" Questionnaire at the end of this segment.

Other valuable tools include;  

 Keep a “personal health notebook,” or password protected computer file, where you write down any routine questions you have for the doctor and take the notebook with you when you go to your appointment.

Better yet, type your notes and ask your doctor’s office if you can send/share the list via secure email or a patient portal prior to your visit.

If appropriate, Include some blood pressure readings, and make sure to note your range (highest and lowest) as well as average results of home or community acquired blood pressure results.

Record your weight if this is pertinent to your medical history as well.

If you have diabetes, and are monitoring fasting or after meal blood glucose levels, include the ranges (high and low fasting and after meal readings) and a guesstimate of averages of the fasting and after meal numbers.

Keep a written record of your medical history and bring it to the doctor’s office.  They will really appreciate it.  They can copy it and put it in your chart and you should take your copy back home with you.

Ideally, note all of your medication, food, and environmental allergies, all of your medications (see below) and each substantial medical or other problem on your list. 

It is also very helpful if you are aware of how the problem is controlled and note this after the listed problem; 

Well, not so well, or not at all well, etc.

Please, always bring a list of current medications to every visit. The list should include things you take as needed every once and a while, as well as any and all vitamins, minerals and supplements.  Be sure to write the dosage and how often you take the medication and supplements.   If this is too hard to do, bring a bag with all our medications and supplements with you. Prior to the appointment, call the office and ask if you can arrive 30-60 minutes early (depending on the size of your bag!) and have a clinical assistant to go through your bag and make a list before your doctor’s appointment.

If you are presenting with a new problem or concern, or a significant worsening of an existing problem, ask if you can complete or at least review a triage sheet or questionnaire ahead of your appointment. We maintain a list of these for the more common and serious problems that we encounter on a daily or weekly basis. In addition, with new acute, or complex chronic problems we often ask our patients to review and or complete a “History of Present Illness” form that improves the accuracy of the visit immensely.  

Write down the names and telephone #s of any specialists you have and take the notebook with you when you go to see them.   

If you have been hospitalized, gone to the emergency department or urgent care, or to another doctors office or had any lab, radiology or other studies done since you saw your doctor last, call ahead and make sure that your doctor has received results or communication from these outside sources prior to your visit.

History of Present Illness Questionnaire; pg 1 of 3- (in context of personal and family history)

Name:                                                                                                             Date:

When did the problem start?  Describe the onset of the process.

Have you had the problem before?  If so, was there a diagnosis made? Was it exactly the same- what is different now?

If there is pain, discomfort or an unusual feeling, where exactly do you feel it- see diagram on last page- mark “x”s  where you feel the sharpest strongest pain and “o”s where it radiates or if it moves around etc.

Describe the quality of the pain or unusual feeling; sharp dull cramping stabbing burning pressure squeezing pulling spasm etc and how it changes etc;

Describe the severity of the pain or unusual feeling, how uncomfortable is it (on a scale of 1-10, where 10 is the worst imaginable pain- screaming with a hot poker in the eye) at its   worst,   best,   on average   and how long does it usually stay at the different levels etc;

Describe the timing of the problem/pain- day or night? Wakes from sleep? Keeps up all night like a tooth ache, constant intermittent? etc;

Describe any factors that seem to modify the pain- make it better or worse and specify if they make it better or worse; eating pooping, peeing, drinking, exertion, rest, certain activities (walking running hopping up and down, postures (laying standing sitting bending twisting), sex, taking a deep breath, bearing down, leaning forward, pushing on certain areas   etc;

Describe how if any activities you are unable to do because of the problem/pain- any disabilities due to the pain?

What if any treatments have you tried so far? Include physical modalities like Heat Ice Rest Physical therapy acupuncture etc, over the counter treatments or Rx treatments. Have any of them helped, what hasn’t worked in the past?

What diagnostic tests (specific blood test, X ray, Cat Scan MRI, Stress Test, internal scope procedure or surgical tests etc.) have been done so far to evaluate the problem? Who ordered or did the tests? When were they done and what if anything did they show?

Describe any associated signs or symptoms- fever chills nausea sweats weight loss dizziness shortness of breath belly cramps skin changes, swelling redness heat over area etc. that seem to come on along with the problem if you have noticed any.

 Draw a diagram of your body that best describes your problems in a schematic way if it applies

Form copyright Winslow W. Murdoch, MD