Samantha Meets her IgA Deficiency Diagnosis

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.)

autoimmune disease natural treatment drugs prescriptions testing

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*)

samantha meets her iga deficiency diagnosis

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.

samantha meets her iga deficiency diagnosis

(***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.

samantha jo meets iga deficiency diagnosis

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!
 

samantha meets her iga deficiency diagnosis

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.

 

Photo credits:

https://pixabay.com/en/tablets-pills-medicine-disease-700669/

https://pixabay.com/en/doctor-drugs-811455/

https://pixabay.com/en/bend-bent-over-heaving-human-1296747/

https://pixabay.com/en/worried-girl-woman-waiting-sitting-413690/

https://pixabay.com/en/barbarian-amazon-fantasy-female-152853/

References:

http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/selective-iga-deficiency/

https://en.wikipedia.org/wiki/Selective_immunoglobulin_A_deficiency

6 Comments Add yours

  1. Leah Sirabonian says:

    You are a trooper Sam! I am so relieved that you finally have someplace to start your search for lasting healing (even though you were on the right path). So proud of you for all the work you’ve done!

    1. Leah, thank you for always being so supportive. I’m blessed to have such a great friend. And, thank you for willingly trying my ketchup. <3

  2. Leslie Martin says:

    Hi Samantha,
    As I read your experiences I felt I was reading everything I had been having trouble with and similar treatments over the last 18 years. I was finally diagnosed w/ celiac disease after I found out my niece had it and saw results going gluten free with in 2 weeks. I still had trouble with leg weakness, fatigue and brain fog. At “university google” I came across Sarah Ballayntyne’s site and bought her books as soon as they were published. I’m doing better but still feel I should have more endurance. I need to get offal into my paleo aip and am looking into Dr. Terry Wahls Protocol for the neuro symptoms. I’m a retired nurse from a university hospital g-i procedure clinic. IF I had trouble getting diagnosed I bet there are a lot more of us out there. We have to keep seeking information and find the medical doctors that will truly listen. New ideas can take time to make their way to the main stream in medicine. Good luck on your journey!

    I’m 61 ,which I don’t feel is old at all, and feel I can’t go wrong

    1. Hi there Leslie,
      Thank you for sharing your story.
      I truly believe that without “university google” (hehe, cute) a lot of us would still be lost about what direction our health was taking and what to do about it. Blessings be to Ballantyne and Wahls! Those women are definitely wonderful informational pioneers that have helped so many people discover answers to their chronic illness woes. You are correct, we do need to keep searching. As well as keep pushing doctors to also learn what we have learned!
      I still have a ways to go, and much more to research and absorb, but I feel more optimistic now that there’s something “official” to work with.
      Good luck to you too with your journey, hun. Keep on keepin’ on 🙂

  3. Heather says:

    Thank you for sharing your story. It sounds so similar to what my son is going through. “Diagnosed” with aneima at age of two. No explanation why. I had to fight for tests, asked for celiac testing which came back negative. Still no help from dr, I switched to a new dr. He tested again for celiac but found that he is IgA deficit. (Which first dr knew but never told us) We are now waiting to see an Endocrinologist and Hematologist. And still supplementing iron every day, he is now almost 5. Do you have a diagnosis for you anemia? Thanks again for sharing!

    1. Hello Heather,
      Its terribly frustrating seeking a diagnosis for ourselves…but fighting to get our children proper heath care is even more so! You’re doing a great job continuing to seek answers for your son.
      I was diagnosed as “borderline” anemic when I was in my early teens, and almost every routine blood test I’ve had since then has caused the testing doc to repeat that diagnosis, despite iron supplementation and eating well. I believe its due to malabsorption issues, but I’m still seeking answers myself for everything else under the sun. I’ve got an appointment next month with a new doctor, hopefully this new doctor will run more tests.
      As far as IgA def. goes, I’ve come across information in further research that it is very common in celiacs, as well as having IgA markers under 50 being a strong indicator that you have gut permeability (leaky gut). This has been my biggest monster to fight and I am still struggling with the damage.
      Currently I’m supplementing on super-doses of bovine colostrum and L-glutamine to try to further heal my gut. I know that people have used this for their children as well! I intend to write a new post about it once I see more results, as its only been about 3 weeks now of this routine for me. Yet, I’ve read nothing short of miraculous results and reviews for both.
      It may be worth looking into for your son. I wish all the best for y’all!

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