Why is a proper, iron-clad diagnosis important? I mean, there is no medicine and no cure. The only thing the doctor can offer is a gluten free diet. Also, why is a diagnosis important at all? I know I have a problem with gluten. I eat gluten and it makes me sick. I have a problem with gluten – done. I don’t need thousands of dollars worth of tests to get diagnosed with something I already know.
Perfectly valid. So, lets talk about the advantages in getting a diagnosis.
Medical Care – There is additional medical care needed for those with celiac disease. There is a protocol for follow up from the gastroenterologist regarding vitamin and mineral testing, repeat celiac blood panels, and bi-annual endoscopies to ensure healing. These are not tests typically run by a general practitioners. Bone density scans, colonoscopy, and certain vaccines schedules are accelerated with a celiac diagnosis. All of these tests are run because of the significant threat of malnutrition and all of the issues that come along with it.
Medicine – There is no medicine for celiac disease. The only “cure” is a strict gluten free diet forever. People can implement a gluten free diet without a diagnosis and feel better. Sure. But, right now, without consuming gluten a diagnosis of celiac disease is impossible. Furthermore, I firmly believe medications will be available for celiac disease hopefully in the next 5 years and a cure within the next 10 years. Without a serious diagnosis, will your doctor prescribe the medication? Will the doctor give it to you without the ironclad diagnosis? I dunno. That might be a discussion to have with your doctor.
I have all the symptoms- There are over 300 celiac symptoms in those that are undiagnosed. Sometimes they are quite vague and can be attributed to just about any disease on the planet. Crohn’s, ulcers, colitis, and many other diseases can have the same gastrointestinal symptoms as celiac disease.
Elimination diet told me I did – I did an elimination diet and when I added wheat products back into my diet, I reacted. So it must be celiac.
Great, the gluten/wheat processing microbiome was decimated by eliminating gluten/wheat for 4-6 weeks. Then, reintroduced gluten products and had lots of gastrointestinal distress. Reintroducing any product after eliminating it for a while will cause gastrointestinal distress because the microbiome that processed that food has been eliminated or reduced significantly. Slowly reintroducing the food and giving it a week for the microbiome to repopulate is really the only way to know for sure.
IGG Allergy Testing– I’m allergic to wheat according to my IGG allergy testing. IGG allergy testing is bunk and will typically only show reactions to things you eat often. Nothing more to say here.
There is no medicine – A gluten free diet is the only medicine for celiac disease. But, if symptoms remain ongoing, you can be tested for additional problems related to celiac, like autoimmune hepatitis, increased risk of osteoporosis, and other diseases.
There are certain protections, such as FMLA that can be engaged for when symptoms strike.
With an ironclad diagnosis, nobody can ever question the diagnosis again. For example, say your blood tests are high, but do not meet the “triple positive” standard and the endoscopy is skipped. Later the diagnosing doctor retires, results are lost, or you move, the new doctor may not accept those results. They may remove the celiac diagnosis from your chart and suggest a gluten challenge.
Participation in clinical trials requires blood test and endoscopy proven celiac disease. Now, this may not interest you, but there is a study of children that wants first degree relatives of those diagnosed with celiac disease to see if and when the child develops celiac. In order to enroll the child, the parent or other first degree relative has to have both blood tests and biopsy to prove celiac disease diagnosis. Without the proper diagnosis, the relatives cannot participate and help move science forward.
What if you are wrong about your gluten issues and your symptoms have exactly nothing to do with gluten? I wrote an article about a woman, who was a nurse, that self-diagnosed her celiac disease. She almost died because she was wrong about her diagnosis and it was something much more severe. Or what if it is an ulcer, Crohn’s, or colitis, which all have medications and cures that are not nearly as cumbersome as a gluten free diet.
An ironclad diagnosis also ensures your first degree relatives are properly tested. While putting the diagnosis in a chart, is a first step, many doctors will review charts and diagnosis before seeing a new client. They will review the results from previous tests. If there isn’t an ironclad reason for a diagnosis, the dreaded gluten challenge may be implemented. Now, there may be a new alternative on the horizon as a one day gluten challenge rather than a 6-8 week challenge, but for right now, we have what we have.
For children, the requirements for diagnosis are changing. Children that meet the trip positive standard can be diagnosed without a biopsy. This diagnosis is required for 504 and IEP plans in schools. Yes, a doctor may put it in their charts, but is the doctor willing to create a letter for the school to create a 504/IEP. Some might and some might require an ironclad diagnosis.
When you go into a hospital, college where you are required to purchase the meal plan, or other place, like God forbid jail, they have to provide gluten free foods per the ADA. Restaurants don’t have to provide gluten free meals because eating at a restaurant is a choice – but most of them will try because that’s what people are demanding.
Sanity. A firm diagnosis gives you a place to hang your hat. A place where you know things are true and the idea of consuming gluten will continue to be important rather than guessing if you can eat gluten at a later time. Although, even with my firm diagnosis, I did question whether or not I could eat gluten. I didn’t test it, but I certainly thought about it.
Anyway, those are my thoughts. Many will disagree that a diagnosis is required and that not eating gluten can be done without a diagnosis. We are all entitled to our own thoughts. At one point, someone asked me why a diagnosis was important – this is my argument as to why.