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Recently diagnosed with autoimmune disease - looking for support
Autoimmune Diseases | Last Active: Sep 10, 2022 | Replies (31)Comment receiving replies
Thank you Chris, I really appreciate your answer. This was the kind of support I was looking for. I have been diagnosed in March, although the diagnosis is still uncertain, they believe it is an autoimmune disease since I responded well to steroids and then plaquenil. Aside from the beginning, this is my first flare, and the pain is new and much worse than before so I became even more anxious thinking all possible explanations. The doctors don't really have an answer as to why the symptoms are coming back, why new and why worse, but it is great for me to find support from others who have gone through this before I did.
Thank you for all your advice, I am starting to try and connect the dots on my own since, as you said, I will end up having to advocate for myself
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Mils -
You are welcome!
Once you have created your symptom sequence list of both of major and minor new symptoms, go to any number of Celiac Disease websites that list CD symptoms.
Compare your list to the websites’ lists and count how many on your list match the published lists. Note: keep in mind that different lists can use different descriptive words for the same condition and some sites have more complete lists than others - so write a list of as many of the different symptoms list items published to get a better comparison.
In my case, the first time I compared lists I had matches of about 50%. But the matches increased to about 80% for the more complete lists as I found more sites. Basically, Celiac foundations, Centers, and government sites usually have the most complete lists!
Finally, even if you only find matches for 20-40%, what is important is which matches you have! So a general symptom like fatigue can have multiple causes, while alternating diarrhea/constipation can be a strong CD indicator.
Above all keep in mind that there are two types of CD patients - Active CDers are about about 3% of the population while Silent CDers can be as much as 12-13%. Actives are usually more easily IDed -, while Silenters often take longer.
And, as much as having a high percent of matches is a good CD indicator, having a match of the sequence of the onset of symptoms is a strong indicator that you have CD and that the damage it has likely done to your body’s ability to function correctly has increased from the initial stages and may well continue to increase.
In my case during the 10 years from CD onset until I began to identify CD as a possibility, significant functional damage was done to various elements in that functionality. Enough so that I have IDed as many as 10 CD related symptomologies!
Good luck on your pursuit of understanding the what, why, and when of your medical challenges! And, keep in mind that once your exploration has highlighted a potential pathway, you will still need to be able to explain how you connected the dots to a number of MDs - until you can find a Doctor that not only wants to help deal with your symptoms but also their causes!
Chris47 -