Why is Autoimmune Disease Commonly Misdiagnosed?

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autoimmune diseaseAutoimmune diseases such as autoimmune thyroiditis (Hashimoto’s or Graves’ disease) or Celiac disease are very common and can affect most organs.

They impose enormous burdens on the health care system not only in cost, but in quality of life for millions who suffer from them.

Autoimmunity results when insults from our environment, diet, and lifestyle interact with our genes to disrupt normal immune balance. They can take years to develop as the body becomes increasingly frustrated and tired of the insults it may be experiencing internally.

The body is like a rubber band, and autoimmune illness can result when the body starts to lose its ability to return to normal. But if you remove some of the factors that keep stretching it to its limits, you can increase the life of the rubber band and at least push back the time it takes for it to lose its elasticity.

Immune activators eventually lead to immune imbalance. Immune imbalance then leads to auto-reactivity to one’s own tissues, proteins and organs - eventually causing damage to those components.

What if you could predict autoimmune disease 10 years earlier than when your symptoms develop?

We now know that the more triggers or insults you come across in your environment, diet and lifestyle, the higher the likelihood you will have autoimmune complications later in life. It is these low-level stresses acting over time that lead to many chronic illnesses, not exclusive to autoimmune illness - although this article will focus on the autoimmune reactivity.

The problem with diagnosing autoimmunity is that it really is more of a question or probability than it is diagnosing a definitive disease.

Our current standard of diagnosis narrows our understanding of autoimmune illness to just the presence or non-presence of just 1-2 tissue-specific antibodies. We now know that the full picture may include many more possible antibodies from a greater variety of possible triggers.

Problems and Opportunities With Antibody-Testing

Antibody testing is not the black and white answer we sometimes are seeking.

For instance, someone with active antibodies to a particular tissue may not actually show any damage to their tissues. There can be a latency period of 5 to 20 years before clinical symptoms actually manifest. But when symptoms arise, it can be increasingly tough to quench the fire.

One example is non-Celiac gluten sensitivity. Someone with non-Celiac gluten sensitivity may show positive antibodies to gluten proteins, but a biopsy may not show objective damage to your intestinal tissue. The result? Your doctor gives you the green light to keep eating wheat, rye and barley (which all contain gluten).

Worse yet, there are many more antibodies that are related to wheat-related food sensitivities that are rarely measured. You may be negative to the standard antibodies measured, but test positive to other related antibodies. The problem is that those other antibodies are the ones not routinely measured.

While only 1% of the population may have true Celiac disease, most of that 1% do not know they have it, in part, because of limitations of screening and testing.

Many more may have non-Celiac gluten sensitivity. They could also be at higher risk for developing autoimmune complications such as Celiac disease or autoimmune thyroiditis later in life, but will never know until symptoms actually develop.

Another example of this is with autoimmune thyroiditis. You may test negative for anti-thyroid peroxidase (TPO) or Tissue Glutaminase (TG), and not know that you could have positive antibodies to thyroid stimulating hormone receptor, thyroglobulin, thyroid binding prealbumin, and others.

The more antibodies that you show reactivity to, the more likely you are to experience autoimmune thyroid symptoms. The more you measure, the better the chances of catching an immune process early, offering the opportunity for preventive action.

It is also difficult to draw a line between what to measure and what to not measure. The more markers you measure, the more the public health cost due to the burdens of health insurance costs, office visits, and re-testing.

Testing can also be complicated in that two people with the same levels of antibodies to the same tissues, can have two very different symptom profiles as well as differing disease trajectories. Two individuals people could have the same autoimmune symptoms, but one could be caused by an unidentified gluten sensitivity, and the other could just as easily be caused by Lyme disease, Lyme co-infections, mold toxicity, or other chronic bacterial, viral, fungal infection that is active in their system.

When it comes to measuring the full costs of managing chronic, complex disease such as specialist visits, advanced diagnostic testing, lost work time, lowered work productivity and more, however; the extra costs of predictive testing may be outweighed by the impact of being able to identify diseases earlier.

More importantly, predictive testing may also give you more indication of how to prevent disease from occurring in YOUR specific circumstances. As awareness increases about the utility of predictive auto-antibody testing from labs such as Cyrex Labs and Immunosciences Lab, its costs will decrease as competition between labs increase and technology improves.

More individuals are asking their doctors for these unique panels so that they may measure  fuller range of antibodies. With a fuller picture to work with, you can catch autoimmune processes earlier, but it also provides doctors with a means of measuring success and failure of treatments as well as counseling you on what specifically may be triggering the immune imbalance for YOU.

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Dr Alex Rinehart

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