I may have some answers or at least a doctor who seems invested in helping me find them.

For years I have been plagued with “minor” health conditions. Whenever I’ve sought medical attention I feel like I’m deemed a whiner. It’s frustrating. Because I know how hard things are for me. And I hate how it makes me feel. I’ve always had the fear that maybe what other people thought was true. Maybe this was all in my head. What do you do then? When you have a condition that isn’t that bad and it’s all mental? That scares me. I’ve worked so hard to break down my walls and fix what I could but what if it isn’t enough? Am I missing something?

Since, I was a child I have always felt like I’ve needed to fight my case that “no I’m not making this up.” and “I really am sick!”

And then I see this doctor. The first day I saw him I was like “oh god here we go again. Another doctor who just won’t take me seriously.”But then he did something different he offered to continue the procedure the next day. It was tough I hated the preparation for the procedure but I needed answers like yesterday.

Going into the procedure I couldn’t help but replay that this doctor had told me the previous day that “we rarely see anything in this test. It’s probably nothing.” but I couldn’t accept that this was nothing.

I was pretty heavily sedated when the procedure ended. I could hardly remember what happened to be honest. I know they gave me a wheelchair that I had bloodwork done. But it wasn’t until later that day I reviewed the pages and pamphlets they had given me and “oh.”. At first I looked at the test and was like “seriously? there’s no way it’s that.” But when I looked up the symptoms I realised that this doctor was onto something.

I don’t know. Maybe he reviewed my chart and started to think that maybe it wasn’t “nothing” or maybe he was just poor at articulating himself on that first day. But he’d done more for me than any other doctor had done at that point. Up to this point every doctor I have seen deals with one of my conditions and that’s it. No one has ever looked at my whole health history and said these things are related and he DID. And what is most shocking is that I think he is bang on.

Here’s the symptoms that I have had in the last 10 years none of which have ever been resolved nor the route cause identified:

  • Iron deficiency without known cause
  • Late puberty onset
  • Missed menstrual cycles (the longest being a year and a half), late start to menstrual cycles, painful menstrual cycles these led to my diagnosis of PCOS at age 17.
  • Random weight gain (also suspected to be as a result of PCOS)
  • Abdominal pain, cramping (@ age 17 which was diagnosed as IBS)
  • Nausea, dizziness not resolvable (which was blamed on low iron, B12, and vitamin D non of which have ever returned to normal levels).
  • Poor circulation to hands and  especially feet (I have this mystery foot condition in which my feet develop deep bloody cracks that then dry out all within a period of 2 weeks and it takes MONTHS to heal before starting over again which I saw a foot doctor for which turned out being absolutely useless)
  • Numbness, tingling, and cramping nerve pain to my wrists, fingers, and feet.
  • Arthritis in my hands (which my family doctor refuses to diagnose because I am too young for it trust me when you have arthritis in your knuckles as a student you KNOW).
  • Unexplained hunger followed by periods in which I must force myself to eat because I’m ‘full’ or feel sick after eating. (lasing days to months)
  • Difficulty falling asleep and staying asleep (starting at age 6 and worsening to the point where I am lucky if I get a full 3 hours of sleep in total per day)
  • Chronic exhaustion
  • Unresolvable headaches (since age 9)
  • Increased susceptibility to viral/bacterial infections, longer duration of infections ( in the form of colds, flus, sinus infections).
  • Gastro esophageal reflex disease (GERD)

And for the past 10 months (tmi)

  • frequent bloody diarrhea
  • Bloody stools
  • Fatty stools
  • Chronic redness and eye irritation
  • Asthma like symptoms
  • sharp abdominal pain
  • Problems focusing
  • I already said exhaustion but exhaustion to an even higher degree
  • flaking nails
  • temperature fluctuations
  • muscle twitching and spasms

Know the Signs and Symptoms of Celiac Disease

 

Dealing with all of these things feels like a lot. But again no one ever really took me seriously. Or has ever given me answers. It’s crazy to me a doctor who I had seen twice not even  with a week of history with me could relate these and I didn’t even MENTION most of these symptoms to him because I wasn’t seeing him FOR that.

This is crazy. I’m still waiting for the result from the biopsies and blood work but I’m pretty sure I know what I have now. I know that when I told my family they were pretty devastated.

My mom refused to acknowledge it as I don’t have the results back yet but there’s one condition that literally ticks of each of these boxes.

It makes sense: celiac disease. It’s sad to say but I’ve displayed both classical and non-classical symptoms. And to be honest I’ve had these symptoms starting very young, worsening as a teenager, and over the last 12 it’s become debilitating.

So yeah, for the first time ever, I have an answer, or at least one that shows promise and the hope that things can get better for me. And if not this doctor has shown me a commitment to helping me by offering more solutions and possible conditions and no other doctor has ever offered that. I am feeling dare I say hopeful?

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4 thoughts on “I may have some answers or at least a doctor who seems invested in helping me find them.

  1. I was diagnosed a few weeks ago, FINALLY.

    SO much of what you wrote sounds exactly like me, and as you said – throughout my whole life! I was even told I was psychosomatic a couple of times because there was no known cause for my problems. When I began hitting perimenopause a couple of years ago at 36, that was it for me. I blew a gasket with my doctors. After years of female problems, the same diagnoses as you received, miscarriages, etc., to be going into menopause so early was a mind f**k. I was furious that no one could come up with anything that fit all my symptoms together even though I knew – I COULD FEEL IT IN MY BONES – that they were connected.

    I begged my doctor to finally test me in January and lo and behold, as neurotic and ridiculous as he thought I was, he agreed and said, “it’s a waste of time but fine, we’ll do it and mark this off the list, too.” Ha!! Bite me! When the results came back he profusely apologized. It didn’t help me to feel better.

    What helped me to feel better was knowing that is been right all along, that I DID know my body, that I wasn’t crazy, and that I was more confident in holistic and naturopath medicine as a choice for myself now.

    And onward we go. I haven’t shared much about my experiences but you’ve inspired me that maybe I should continue to share. How many of us are out there like this, waiting years for answers, trusting doctors who call us crazy, doubting ourselves…

    I’m SO happy you might have found the source of your pain and physical torment. I look forward to seeing what you share about your experiences and especially diet. Much love, and it’s so good to “meet” you here. ❤️🙏🏼✌️

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    • Thank you so much for this response! I think it’s so important to share our stories with other people. I got my results last week only to find that it isn’t celiac disease so now I’m back to square one.But I definitely think you should continue to post about your experiences with it. That’s so awful though I am so sorry for the pain you had to go through and that you were never helped. But seriously what kind of doctor does that gah! Sometimes I’m shocked and appalled by how the health care system is so quick to call someone crazy. Anyway I truly appreciate your heart felt response and look forward to what you post ☺

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      • Thank you for the encouragement to continue posting. I’ve been battling with that for a little while now, which is almost hilarious as I only started this blog this year. Sigh… It’s true what they say – it takes a village. Not just to raise a child, as the saying was initially about, but for so many things. Coping with chronic illness is one. I’m happy you’re part of my village, and grateful to be welcomed into yours. Lots of love. Hope you’re having a good weekend!

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