Healthcare fail: the diagnosis that wasn’t

The details may change, but the gist is the same. The symptoms are there, the request made, the answers not given, the diagnosis left unmade. It’s happened to many of us. It’s happened to me several times, actually. I’m still wondering how it happened with my Celiac Disease. Of course, technically I haven’t been diagnosed with Celiac to this day….

The first doctor ignored me for a while. When I was insistent that I wanted to be tested for lactose intolerance he said there was no test for it. Instead, he had me keep a food and symptom journal. He sent it to a nutritionist, then reported back that I didn’t have lactose intolerance. He didn’t care to investigate further. Last year I found the nutritionist’s letter in my records. She’d said it didn’t seem to be lactose intolerance but there was clearly something going on and she wanted to see me. I never got that message.

Then there was the gastroenterologist who diagnosed me with IBS after 2 minutes of a 10 minute appointment. He gave me a prescription to take before meals. Funny, but those pills never seemed to help. A couple years later I found a guide to an IBS diet on my own and followed it the best I could.

Another doctor took me seriously, at least, but was woefully inadequate. He ordered a colonoscopy to rule out Crohn’s, since an aunt had that. It was ruled out and my symptoms continued to be attributed to IBS. Well, my gastrointestinal symptoms did, anyway. It was assumed my other symptoms were completely unrelated. How convenient for them. How horrible for me.

Then there was another gastroenterologist. She did an endoscopy. I wonder if she checked for Celiac? I would hope so, but she never mentioned it. She said she was checking for reflux. She doesn’t practice any more and I haven’t had a chance to find her notes in my hundreds of pages of records. But I do remember her diagnosis: IBS and reflux, plus something else that she wasn’t sure of, but I shouldn’t be too worried. I’m not kidding! That’s what she said! She said that my symptoms could not be entirely explained by IBS and reflux so there had to be something else. I was sure I didn’t have reflux. My aunt and grandmother had it, and my symptoms weren’t anything like theirs. Still, I took the pills she prescribed. And I got worse. Sigh.

At last my rheumatologist suggested I should get tested for Celiac. In hindsight, I can’t believe no one suggested it sooner! I have classic symptoms. It even took my rheumatologist a while – I’d been seeing her for several years when she brought it up. I resisted, of course. I didn’t want to give up my favorite foods. And I was scared. Anything with food was scary, since I was so sick so much of time. Still, I might have let her run the test. If only she could. Her department didn’t let her run any tests that weren’t part of her specialty. The computer system didn’t even offer it as an option! She could run my blood count and ANA every day of the week, but no Celiac tests.

On the bright side, she put the idea in my head. That meant I was more open to it several years later when I was doing hypothyroid research and came across the link between Hashimoto’s Disease (autoimmune hypothyroid) and Celiac Disease. Many Hashi’s patients have Celiac or gluten intolerance, so some professionals recommend a gluten free diet. Hmm. It made sense. After reading that same advice from several different sources and thinking about my symptoms, I knew I had to give it a try.

I talked to my new PCP (primary care physician), who didn’t think I needed to worry about it. She hadn’t heard of the link and seemed doubtful about the research I had come across. She dismissed my symptoms as being IBS. Going gluten free was the new fad diet. I told her I wasn’t doing it as a trend or to lose weight. I pushed her, and she gave me the necessary referral to see a nutritionist. She didn’t run any tests.

The nutritionist took me seriously. She gave me useful information. I was on my way.

I knew that if it worked, I’d have to eat gluten again in order to be diagnosed. I was looking forward to it; I’d get to eat my favorite foods again for weeks! How great! You see, after being gluten free for a while the antibodies die down and the intestine heals, so there’s no way to run an accurate test. The only way is to eat gluten again. The better way is to be tested before going off gluten in the first place.

Eating gluten sounded great at first, but something changed. I stopped feeling nauseated every day. My diarrhea almost completely disappeared. The cramps were gone. The gas and bloating went away. The pain that put me in agony, pondering if death would be better, was no longer a weekly or bi-weekly occurrence. I was free! I could live! I could go to the park for the day without worrying about not being near a bathroom! I could join friends for meals without worrying about being sick for hours afterwards!

Yes, I occasionally get glutened and it’s all kinds of horrible. That pain and nausea and diarrhea all return with a vengeance, but at least I know that it’s temporary. The worst of it lasts a few hours, and the lesser symptoms linger for a few days. I know from experience that it could be so much worse. And most days, I don’t have any of that! I’m grateful every single day that those symptoms are gone.

It hasn’t been easy. Eating out is all kinds of challenging now. But it’s completely worth it. It’s so worth it, that I have no desire to eat gluten for even one day, never mind for the weeks that would be required for testing. I’m incredibly careful to avoid even a tiny amount of accidental exposure. I’m not about to do it intentionally. So I remain untested. Maybe I have gluten intolerance. Maybe I have Celiac Disease. Does it matter? Either way, I’ll be avoiding gluten. (And yes, the difference matters because of secondary issues, but I’m still not going to get tested.)

Unfortunately, though, damage has been done. After what I suspect was 18 years of undiagnosed Celiac Disease, I got pretty damn sick. I’ve been reading about how some researchers believe untreated Celiac can lead to Hashimoto’s Disease, which I developed. Hmm. And we know that my poorly treated Hashimoto’s led to adrenal insufficiency. And that led to me having to leave work. I don’t think untreated Celiac caused all of my health problems, but it sure led to a lot of them.

I try hard not to dwell on the “what ifs” in life, because it doesn’t help. Still, from time to time, I wonder what would have happened if that first doctor had taken me seriously 20 years ago. Could I have avoided most of this?

Or course, there’s also the flip side: what if I had listened to my doctors and believed that my problems had nothing to do with gluten? How much sicker would I be right now?

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2 Responses to Healthcare fail: the diagnosis that wasn’t

  1. wlerch says:

    I was diagnosed with MS in August – I have likely had it for a very long time – likely when I was 19 and my hands and feet were tingly all the time … hmmmm – no we don’t know why this is happening, but here – take some amitryptalene (no idea if I spelled that right) – it’s an antidepressant and sometimes helps with pain management. Ok… my first autoimmune diagnosis came when I was 19-20 and it was hashimotos thyroiditis. Oh – if I knew then what I know now. This is what I was told “well, you have hashimotos, it’s not really a big deal, but we can’t do anything about it until your body has mutilated your thyroid enough that it is consistently not functioning – then we can give you thyroid meds… until then, you just have to deal with the symptoms of having thyroid “bouts” until they are constant…” SERIOUSLY – but I thought, ok, I guess that’s that – and a year later started on levothyroxine. I also have vitiligo – and who knows what other autoimmune issue because once you have one, you are prone to all of them. But anyways – back to the MS – about 6 weeks ago I did an elimination diet (basically autoimmune paleo) no gluten, soy, dairy, sugar, caffeine, nuts, seeds, nightshade vegetables (I’m probably forgetting something) 30 days to try to reduce the inflamation in my body and then we can try to add some of those things back (but not gluten – no more gluten for me) and see how it goes – well guess what! 3 days in (yes only 3) my foot was feeling almost normal and I was able to go off the gabapentin (nerve numbing med) now – 6 weeks later – my foot rarely is bothering me at all (unless I eat something I shouldn’t or get too fatigued)… and yet still – if you ask any of my doctors or the staff at the MS clinic they will say “there is no scientific evidence to support that changing your diet will impact your MS at all” – ARE YOU FREAKING KIDDING ME??? So – I did my own research (still am – at the beginning of what will be a lengthy learning curve) and since I had nothing to lose I gave it a go – what I discovered is – PHENOMENAL – gluten, soy… so many things are impactful with autoimmune disorders – is everyone the same – obviously not – however that is PRECISELY WHY OUR DOCTORS NEED TO LISTEN TO EACH OF US INDIVIDUALLY AND TREAT THE INDIVIDUAL NOT JUST THE DISEASE – OR WORSE – THE SYMPTOM. (I’m a little worked up about this) But I too wonder – if I had known this in my 20’s – would I have changed? Would I have given up that yummy food? I don’t know – if I had – I may not have MS today – what I do know is that changing my diet has had a significant impact on how my body responds to this disease, and while I am still learning all the ins and outs related to managing my MS, I feel I am on the right path. And as far as scientific evidence – well, the fact that if I eat something that my body doesn’t like, my leg will immediately start burning – or last week when I sneaked a teensy weensy piece of cake (gluten bomb) HOLY – the pain hit within 15 minutes and then a trip to the bathroom at which time I thought I was going to die… thankfully I didn’t have a big piece because frankly – it was HORRIBLE! I personally have enough scientific evidence to support the theory – and no – I will not have a celiac test – why put yourself through that kind of pain to confirm something you already know – gluten is not your friend!

    • chronicrants says:

      Wow, what a story! Good for you for taking things into your own hands, trying out new diets, and doing your own research! I know from my own experience that none of that is easy, but I’m glad to hear that the diet has already helped you so much. I hope you can continue to find new paths to improvement. And maybe along the way, your doctors will learn something, too!

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