However, some people come to the knowledge that they cannot tolerate gluten because they went on a gluten free diet, either as part of the fad, or because they were ill and were told, either by medical professionals, by friends, or by doing their own research, to cut out gluten, then add it back in.
The main suggestion is that if you eliminate gluten, then add it back in, that you have an issue with gluten, but are to continue eating it until you have the endoscopy and/or blood tests done.
If you have been without gluten for a long time, you must subject yourself to weeks upon weeks of an agonizing gluten challenge in order to get accurate results.
My question is WHY?!
First of all, the gluten free treatment for Celiac Disease was discovered when the Netherlands experienced a shortage of bread in the 1950s. Children being treated for Celiac Disease improved. When aid came, and bread was able to be redistributed, the children that were being cared for began to decline, again. (A Brief History of Celiac)
If one of the major breakthroughs in this disease was the elimination of wheat products, why can that not be part of the diagnosis?
Secondly, isn't it against the Hippocratic Oath, not to mention, unethical, to induce disease that could bring about harm? There are instances when this is necessary, where symptoms need to be recreated so that the doctor can gather information about the details of the illness. In the case of Celiac Sprue, however, might a food diary assist?
When a diabetic presents with illness, the test is done, and the treatment is immediately given. The same is true of peanut allergy patients and Lupus patients and cancer patients. Celiac disease may not be the only disease where treatment isn't immediately forthcoming, but when a patient presents with symptoms, there is a lot of "hem and haw" going on.
Some patients are told that their being overweight rules out Celiac disease from the get-go. This is patently untrue! Obesity is one of the SIGNS of celiac disease! If that wasn't embarrassing enough, they must undergo a test for which they must undress, be sedated, and have their nether-parts exposed to near strangers, to rule out other diseases. ...And we're told this is the "gold standard."
I hope doctors and the medical field, overall, consider the human cost. It would be great for many of us to have a diagnosis, so we can have a record in our charts, wear medical alert bracelets, if necessary, and be taken seriously, as well as monitor our disease progress so that we can know if we're experiencing low-level poisoning and determine whether our health is actually improving. Many of us can't afford to take 3 months off work to allow for the symptoms that will inevitably come.
Wouldn't a better benchmark be the genetic markers? You can't have the disease without the gene or genes, and while intestinal recovery can come and go and relocate, the genes never move. They will always be present to be identified. Besides, there is a less likely chance of getting this one wrong. The tests are very accurate, and if in doubt, a rescreen can be done at any time, without significant harm or distress to the patient.
This test also side-steps the possibility of a patient being unable to produce IgA, which gives a false negative for some celiac patients.
This test, having the ability to be given at any time, can accurately evaluate a patient at any time during their course of recovery. This means that more patients can discover the true nature of their illness, come to acceptance sooner, and be well on their way to healing. And more patients documented as having the illness can allow the scientific body more accurate estimates to the prevalence of this disease within the population.
My recommendation, as a probable candidate for Celiac Disease and graduate of the health sciences, as a better standard for patient care and for the diagnosis of Celiac Disease:
On day of presentation:
1. Patient food and health diary
2. Genetic test, as Gold Standard
3. Nutrient counts in blood tests
4. C-reactive protein and other markers of inflammation in blood
5. Stool samples, to support disease process.
Next steps:
6. Short-term, monitored, journaled, and blood-monitored gluten challenge.
- Several weeks OFF of ALL gluten-containing foods
- Recommend diet plan
- Patient is to document all meals
- Blood work each week or at the end of the GF period
- Document improvement or lack of on GF diet
- Challenge with gluten, no more than a week - and blood work checked for markers of inflammation
Regina Gates
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