Hello, readers. It's been an emotional roller coaster of a week! If you are like me and compulsively followed your gut onto the gluten-free diet before you got a clear diagnosis from your primary care doctor (mine did not offer good care or guidance in ANY way), gastroenterologist (well, if my doc had sent me to one) or dermatologist (for more steroid cream? no thanks!), then you are, also like me, stuck wondering how to get diagnosed, which is doable but intensely more difficult than back when you ate bagels for breakfast.
In January of 2007, I went gluten-free on my own with no guidance, and with every intention of going back to a life with gluten at some unknown point, a point that moved further and further into the future until it has now disappeared forever. I did try to eat wheat and gluten in April 2007, and a few more times during that year -- every time I suffered for it and developed a rash and other intestinal symptoms, all of which would disappear when I went back to being as gluten-free as possible.
If 365 roasted sunflower seeds from the Whole Foods can make me as sick as they did a few weeks ago (labeled "manufactured on machinery that also handles wheat") and for as long, I can only imagine how incredibly bad it would be for me to ingest a bite of cake like I did at my wedding September 29, 2007...if I got married now, I would be looking for a caterer to do a gluten-free wedding for us!
So, how to move forward with a diagnosis without eating a baguette and having your blood tested for the correct antibodies, and then have a small intestine biopsy that may or may not show the disease, depending on how long it went undiagnosed and how long you've been healing on your new diet? (Folks like me with DH, the skin presentation of CD, sometimes do not show ANY symptoms in their small intestine). All followed by a 7-or-so-day gluten hangover with a variety of symptoms and a compromised immune system?
There is hope. At least I keep telling myself that this week.
There is a genetic test you can order from Prometheus Laboratories to show the two genes that ALL Celiacs share. This would rule it in or out definitively. If you have the two genes, it means that you are predisposed to the disease. It's not a diagnosis, but it IS a starting point to one.
I am lucky (or profoundly unlucky) to have the skin manifestation of the disease, Dermatitis Herpetiformis or DH, only identified by sight by a knowledgeable naturopath in March of 2007. All people with DH have CD. And, once you have celiac disease, you always have it. But I need a skin biopsy to show that I have one disease, and therefore, the other. My DH went away completely when I finally decided to stick to the diet in November of 2007 (um, an obvious clue). What to do?
Well, thanks to the 365 sunflower seeds I was eating every day and then immediately falling asleep bloated on the couch for a week or so...these episodes were followed up with...HARK! a really itchy bubble/blister appeared on my leg, right where one of the lesions used to be pretty constantly between the late 90s and 2007. I quickly made an dermatologist appointment to get it biopsied.
Luckily it was still in fine bubble form for my appointment this past Monday, where the nice intern listened so patiently to me about my history and why I was there that day. He thought the biopsy could be done. (With a positive DH diagnosis I would have a CD diagnosis). Then the head doc came in and got skeptical with me. I should have been prepared -- I have faced skepticism so many times with doctors! He said, "Celiac disease is very, very rare. I don't know if this lesion is enough of one for analysis. We can try..." (I didn't tell him that in fact celiac disease is NOT rare, just underdiagnosed -- three million Americans alone have this silent disease, and only 5% are diagnosed. I didn't want to jeopardize my getting the biopsy done, so I smiled and nodded). He did the circular cut with some local anesthetic and sewed me up. Are you taking aspirin or blood thinners? he asked. I said no. Well, you're bleeding quite a bit. (OK...well, it did stop eventually. I hope that doesn't mean I have other underlying issues). But the deed is done. I don't have any other lesions to biopsy, so my fingers and toes are crossed that he:
1. took the skin sample from where it needed to be taken. (I have subsequently read that the biopsy site is adjacent to the lesion, usually not on it. He took my bubble, and a tiny bit of the surrounding skin, ergh).
2. is sending it to the correct lab where they will do the correct analysis. Here I just am having to have faith that he knew what he was doing because I didn't research all of my options. I could have had a test sent to me that I could have brought in to their office to have done professionally, and then made sure it went to one of a couple of labs...but I didn't have that info going into the appointment.
3. that he did everything with care so I won't have a scar. This would especially hurt if the test comes back negative for improper sampling. Then I would be right back at square one, with a scar to remind me.
I am ready to move on with my life, so I am hoping for some closure on this. And by moving on with my life, I mean my gluten-free life, which I have come to accept and even love. It's part of accepting and loving myself for who I am. I would like this diagnosis so that I can voice it out loud without question marks: "I have (fill in the blank here with: celiac disease, gluten intolerance, anything other than wondering...)." There. It already feels better.
Why bother with the diagnosis at all, you may wonder? I didn't bother until now, after reading that I can write off my extra food expenses on our taxes with a doctor's diagnosis, and that eventually I may have coverage as a celiac to see a nutritionist, much like diabetics do. When diet is the ONLY prescription, shouldn't peeps with CD be covered by their insurance to see a nutritionist to make sure they are properly absorbing nutrients? (a huge problem for undiagnosed celiacs still eating wheat and gluten, and obviously something that would need monitoring after you change your diet -- g-f foods and flours are not enriched like their glutenous cousins, and I have had to be on a pretty crazy vite, mineral and probiotic regimen to feel well, and apparently I still might have a vitamin K deficiency, hence my heavy bleed at the biopsy site).
Time to go change my band-aid where my old bubble-friend was. Thanks for reading and supporting me through this time. There are better days to come!
Be well.
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