This post was originally titled, “I am Un-Diagnosed. And That’s OK, for Now” but things have changed since I first started writing this in June!
Blood tests. Breath tests. Physicals. MRI’s. Psychiatrists and counselors. More blood tests. Repeat visits to different physicians. (To name a few methods of seeking answers.)
Steroid tablets and shots and creams. Proton pump inhibitors. Pain medication. Anti-depressants. Sleep aid prescriptions. Mood stabilizers. Anxiety pills. (To name a few treatments offered.)
The only mention of diet by medical practitioners in these 17 years of repeat (and unsuccessful in the end) treatments was to eat “a low fat diet.” And recently a doctor explained to me what a gluten-free diet was (mind you, after I had already explained to him that I have been on a gluten-free diet, including grain-free, for a while now.) With my visit, I had brought in my copy of The Paleo Approach by Sarah Ballantyne to show him the Autoimmune Protocol and let him know I was preparing to take on the lifestyle. (This invoked no words from him. *le sigh*)
My diagnoses for the symptoms I was having: Depression. GERD. Generalized anxiety disorder. Osteoarthritis (and just plain ol’ “damaged knees from over-use”). Vitamin D deficiency.
But never in any of my visits to physicians had any of them mentioned a change in diet or lifestyle. The majority of our medical system in America is broken, in my opinion, but I won’t delve too deeply into the politics of that! Rather, I would like to stress the importance of diet and lifestyle in our efforts to heal ourselves and/or ease symptoms from any disease. The dietary and lifestyle guidelines that are currently set in place in the medical arena are beyond sub-standard. Following the low-fat, high-carb dietary recommendations that were always recommended to me did nothing but worsen my symptoms, create new health problems, and make me very, VERY sick.
(***All of the above was written last month. All of the below is an UPDATE as of July 15.***)
Now I am in the process of reversing the years of damage done by inconclusive and improper diagnoses as well as doctor’s orders. I’ve had a TON of progress in healing my gut using the AIP since last December, but there are still issues going on in my picky-belly. Re-introductions on the protocol are hit and miss, and some seem to be going great.
Unfortunately, when I add a “successful” food back in regularly, sometimes I develop stomach inflammation again. This causes a lot of confusion as to what food I’m now reacting to. Furthermore, I haven’t been doing well with starches and cruciferous veggies. There are still the “old favorite” recurring issues: muscle weakness, stiff joints, brain fog, anxiety, chronic and lengthy colds and seasonal allergies galore; all of which keep whispering in my ear that I am not fully healed, and that I need to dig deeper.
So, I’m doing just that. After I got back from vacation, I had a few more basic tests done by a new doctor in hopes of being pointed in a new direction towards further tests. He was guessing rheumatoid arthritis and lupus testing at an outside lab may do me some good after we got the basic results back. The results: Anemia’s looking great. Liver is looking stellar. No irregular signs of inflammation throughout my body.
You would think this would be great news, right?
“Everything came back great! If you have any questions, give us a call,” stated the voicemail. Yet, with chronic illness that isn’t great, stellar or regular…and after hearing this SAME advice and response to test results over and over again for years…and when your body is screaming the exact opposite, ie: “Everything is NOT great,” well… you kind of want to scream aloud along with your body. And get frustrated. And cry. And give up.
I’ve gotten frustrated before, and I’m 100% sure I still will many more times in my life. Same goes for crying…hey, I’m a Cancer. And a big emo baby sometimes. Giving up, though, is not in the cards for me. Not for this aspect of my life anyway. I’m trying to live here, dammit, and I’m trying to live vibrantly.
So I went back to last year’s thyroid, CMP, general bloodwork and Celiac test results from my previous doctor. I dug around and quickly realized that Dr. Anonymous never tested for T3 and T4 as I had requested, but only for the TSH results (which were on the lower end of normal, but still considered normal). This alerted my spidey-senses and inspired me to look through the other results more thoroughly to see what else may have been missed. There were some numbers off in my globulin areas. My anemia numbers were looking better than last year, so it was nice to see an improvement there.
The big bad elephant in the room, though, was the lab technician’s note to my former-doctor on the Celiac test results from last July: “CELIAC NEGATIVE. CONSIDER IgA DEFICIENCY.” Below that note were my numbers…plain-as-day. These numbers were below the normal range for Immunoglobulin-A’s. And Dr. Anonymous mentioned this diagnosis to me a total of ZERO times.
Instead of calling Doc Anon and cussing him out, I just took a moment to do so internally. And vent to Hunni. Then my mother. And I felt better. I took some deep breaths, and realized that had I known last year what my diagnosis truly was I would not be exactly where I am today. I like where I’m at right now (minus the lingering symptoms, of course!). So I put on my big girl pants and I moved on to research what in the world IgA Deficiency is.
In layman’s terms, Imunoglobulin A Deficiency is where your body doesn’t produce enough of the antibodies necessary to protect your mucous membranes in your mouth, airways and digestive tract, namely. The IgA antibodies play a major role in protecting us from infections in those areas. When those areas aren’t protected, they’re going to get infected. The symptoms seem to be similar to Celiac disease, hence the similar health problems and food intolerances that coincide with the deficiency.
This post by Sarah Ballantyne delves more deeply into the connection between IgA deficiency and gallbladder disease, as well as the embarrassing inaccuracies in Celiac tests that consistently result in false-negative results. (Having Celiac symptoms even though your test was negative? You could still be a Celiac!) I found it particularly interesting as she also mentions gallbladder disease and the connection between it and these health disorders, as I had my gallbladder removed in 2008. This information definitely helps me tie my diagnosis more tightly together.
So…the next question is, what’s next for me and this new diagnosis?
a) Relief. I feel so relieved to finally have SOMETHING MEDICALLY SOLID to grasp on to.
b) Research. I’ve been a busy bumbling little bee and bookworm since this revelation, and I’ve got a lot more to learn about my disease, and I plan to learn it all! Muahahahahahaaaa!
c) More Tests. More Healing. I want to get my thyroid panel fully checked. I want to get more tests done to determine whether or not I actually have Celiac disease. Also, I’m deciding whether to go the route of the GAPS Diet or the Specific Carbohydrate Diet, both which heal the leaky gut and aid in reversing chronic illness.
d) Action. Once I decide upon which path to take dietary-wise, I plan to implement it with 100% adherence, just like I did the Autoimmune Protocol. If my healing progresses with my selected protocol as well as it did with AIP, there’s no doubt in my mind that I’ll actually be able to get my gut healed and reverse the symptoms of my chronic illness.
So there we have it folks. My name is Samantha Jo Teague and I am an Immunoglobulin-A Deficient warrior. Rarr!
Hey you! Yes, you! What obstacles have you faced and what triumphs have you had while seeking a diagnosis for your chronic illness? I would love to hear from you in the comments below, or via an email in the “Contact” area.