That GUT Feeling…

Things that make you go hmmmm?

Things that make you go hmmmm?

If you remember my appt with Dr. E in October, and follow-up blood work in November… (that yielded no results, other than an elevated ANA of 1:160 which they felt was just “nothing” despite my symptoms) – then you remember how crushed I was when she recommended that I go to another doctor.  An Immunologist.

The soonest appointment?  Two months away.

I decided I was grateful she did that, as it pushed me to seek alternative help – I was failing quickly.  I knew I couldn’t make it through the holidays.  At the rate I was going, I would likely end up in bed on a daily basis, if we didn’t get some help soon.  Thankfully, a thoughtful friend who obeyed when God prompted her to contact me… I found a naturopath, Dr. K who has been most helpful in untying this knot.

Well, even though I have made some great progress in only ONE month… I still had that appointment set with the immunologist this week.

Do I cancel it?  But the nauturopath suggested I get tested for Lyme… to rule out any chronic type of infection.

Reluctantly – we went with an agenda in mind.  Ask questions, get Lyme test.

I didn’t have the normal paperwork ready for this doctor, as I knew she had my files.  I really didn’t want to go.  My gut told me to just cancel.  I should have listened.

So I arrive on time to the same “pod” as Dr. E… interested to see just what Dr. G might have to say about my health history, chronic infections and elevated ANA – despite being on a GF diet and having my chronic gut issues on the mend.

Imagine my surprise when a young male entered the room.  He introduced him self, but I heard nothing he said… as I was thinking…”you aren’t Dr. G.”

The greek looking resident with thick accent proceeded to say that he was basically fielding for Dr. G… to figure out just “why I was here.”

The puzzled look on my face must have been apparent – as he repeated, “I know what the paper says… but I want to know why YOU think you’re here.”

{At this point, I’m thinking maybe a barrage of cameras is going to pop out to let me know this whole past year was nothing but an awful joke – and I’ve been filmed as a study for some greater purpose… }

But alas… HE was serious, and I was STILL very confused.

I started in speaking… but I don’t know what words were coming out.  Something about being referred… and my ANA… and he cuts in again.

“Usually people who have had chronic infections seek out an immunologist… you know, people who have been sick a lot, respiratory issues, breathing issues… people who have low IgA… or immune problems.”

Once again I started speaking… and I found myself calming explaining why I was there.

Wait a minute.  WHY am I defending why I’m here?

WHY was HE asking me why I was here?????  It wasn’t a referral *I* asked for.

I had a pile of sheets stapled together in my lap that I had been working on since I checked in… a health history of sorts, documenting different symptoms.  {After about an hour of him talking – I just put it in my folder.}  He never looked anything over… nor asked for those sheets.

I began to explain I *had* chronic infections … for years before I went gluten-free!  Pink eye, yeast, sinus, throat, and most recently the UTI that lasted a month.  I explained I had gotten the flu the past three years, despite being immunized… he listened, and then told me that my IgA being on the low-end had nothing to do with how sick I had been.

Really?

It was almost as if my voice took on Charlie Brown’s teacher when I spoke.  I explained that I had waited 2 months for this appointment and had driven 2 hours to meet with Dr. G regarding what to do next – because clearly the additional symptoms my body had taken on, were NOT normal.  Dr. E didn’t know what to do further, and obviously REFERRED ME here….  A blank look came across his face… and after an hour and half of this – he said he would be “right back.”

A few times he came in and out… apparently talking with someone from Rheumotology.  Why I wasn’t in THAT department, I have no idea…

FINALLY, Dr. G appeared.  A petite woman, around my age… with a delicate face and long red hair.  She was kind… and spoke as though she thought I was here to inquire about celiac disease.  She began explaining to me that being off gluten was very important… as she continued talking I realized she had no clue about me or my history.  When I explained about how my past year went, including my lack of celiac antibodies, and how the GI did my biopsy incorrectly… she began to talk about “non-celiac gluten sensitivity”… again, assuming I didn’t know what that was.

But those people… they don’t have GENES for celiac.  “The auto immune genes for celiac are the difference,” I stated.  My mother and I are positive for those genes – and I have every symptom in the book.

This is where I wonder why common sense doesn’t trump out these tests.

This is where I wonder why well-educated people, can’t simply look beyond their charts and realize… there are people who don’t fit within their boundaries – whose problems aren’t in their head.

If you’ve ever studied MEANS before… then you understand how everyone being designed differently MIGHT not apply to tests in the same way as majority.  It isn’t because they don’t have an issue.  It’s because the TEST isn’t able to show it the same way for all people.

Example: if my lower IgA is REALLY low for me, but it’s not for my husband… than he might not have a problem with colds, infections and the like… while I battle things non-stop because clearly, my body is struggling.  It’s ABNORMAL for me.  It’s not where my body is happy.  My body might not be able to perform at that level… compared to someone else.  A logical thinker would be able to figure something like this out…. correct?

I don’t say this because I want to be diagnosed with something I don’t have … I say this because it’s clear that all of the other evidence points to an answer, and yet it’s ignored without the two things someone has set as the necessary needs for diagnosis.  It’s the same thing with celiac, as it is for Sjorgrens, and I wonder what else.

The bottom line is this – I have auto immune disease genes.  I have every symptom of celiac, and of Sjogrens… and I understand that hypothyroid (and chronic fatigue, and fibro) go with those things also.  I know what these mean also because I *FEEL* it… and I’ve SEEN the effects.

Not because I read it on the internet, or in some book… or created it in my head.

I’m not “just tired” from having 8 kids….

I don’t need more rest… because I could sleep all the time on the days I couldn’t get out of bed.

The pain definitely has triggers.  Cold. Wind. Sunlight.

No.  I do not want an antidepressant.

No. I don’t need anti-inflammatories in the form of antidepressants either….

SO when Dr. G suggested she might refer me to an infectious disease specialist…. I declined.

Truly – I’ve had ENOUGH.

Enough not listening to my symptoms… and enough testing to last me a lifetime.

The best suggestion she had was to maybe see someone from their integral medicine department that dealt in holistic medicine, warning me that it was “really expensive.”  I just said… “well, it’s cheap if they can truly help you feel well again.” She agreed.  I told her I would keep them in mind.

But what I wanted to say was this:

“I clearly have celiac, hypothyroidism and Sjogrens – and you missed it.  I have a leaky gut and multiple vitamin and mineral deficiencies and THAT is what created all of these other auto immune symptoms – thanks to celiac being undiagnosed for years and you ignoring my genetic make-up.  You tell me nothing is wrong… when I’ve told you SOMETHING was wrong because this is NOT normal for me.  I am not “just tired” – this is NOT something a power nap will fix.  Look beyond your numbers on your chart and realize something is going on.”

 

After 4 hours in that appointment, I sat in the blood lab to do some standard checks on my CBC, and a recheck of my ANA…(no test for Lyme BTW), but they were finally testing numbers on my liver, and heart thanks to some advice from the rheumatology department – two important organs that could very well show damage related to the symptoms I’m having.  I was thankful for this… it was something.   I looked around at all of the very SICK people there.  Most overweight.  Many looked tired, defeated, and worn down.

I prayed for our country, and for the people who don’t have a voice, or access to books and information to learn about what to do to be well again.  To the people who eat poorly – to get by… to the people who never make time to take care of their bodies through exercise…  PLEASE.  Stand up for yourself.  Take CARE of that body God gave you.

If your doctor is analyzing numbers like an accountant, but unable to hear/see you as a unique person – designed by God… then GET A NEW DOCTOR.  YOU are worth it.  Your future is worth it.  You are worth being heard… and you have the right to say NO to medicine that might actually make you worse with side effects.  Research all you can before you take anything.

In the mean time – my natural thyroid meds have helped a TON, and my vitamins are doing their thing…  I’m missing sugar a lot – but I’m doing ok, knowing I can work out again and my metabolism is on the rise again.

*** I do want to say there are a lot of great doctors out there… and for most purposes, their testing and numbers are important in diagnosing some major illness.  However, as a whole – they have got to get a handle on understanding the importance of nutrition – how utilizing vitamins and natural options for treatment –  and LISTENING to their patients. 

Do not discount the effect of every bite, every sip, and every breath you take…  healthy for HIM.

“Give thanks to the LORD, for He is good; His love endures forever.”

Psalm 107:1

Posted on January 17, 2013, in Celiac/Gluten Sensitivity, Diet, Metabolism, Our Struggles and tagged , , , , , , , , , , . Bookmark the permalink. 6 Comments.

  1. Sara,

    What is the natural thyroid medicine you take. I have felt no improvement from what Atwood has me taking and I have told him this. I just got my blood work done again on last Friday and I had to call them back Tuesday to ask what they found out — Stacy was like oh it was 1.26 which is better than last time which was 2.4 — what is frustrating to me is some Dr. do not even treat until it over 5.0 !!!! I asked Stacy if I could have a listing of all my levels since this started back in May 2011 she said yes that I would need to stop by the office to get it later this week so I will go in tomorrow to get it — any other things do you think I should get from my charts? I am going to build my own file for me 🙂 Thanks for sharing. I learn something from you each time you share.

    Shana 🙂

  2. Your experience sounds all too familiar. The appointment scheduled with another doctor, the gut feeling to cancel the appt, the resident who comes in to take a history and the doctor who comes in but never asks the questions but just takes what was relayed to them, and then the experience of being told my chemical sensitivity was all in my head and that I should get psychological help. There are excellent doctors out there who will listen and work with you. It just takes effort (and, unfortunately, some trial and error) to find them. Thanks for a great post.

  3. I completely agree… thankful for those doctors who listen and realize your symptoms match some serious issues that your body is lacking/needing. I think the key is what you said – trying SOMETHING, vs. doing nothing and throwing a pill at you. If I was mental or depressed – I would have given up this gig a long time ago! I’m so sorry about your experience… I think they just don’t understand it. Experience teaches you a lot – quickly!

  4. Shana, it’s called Thyroid Energy – and it’s by NOW. Always get your charts. I’m sure I”m a major drag getting copies of everything – but it’s just wise to have your own paperwork on the tests and information on yourself.

  5. Was browising internet to see if sucanot was a specufic carbohydrate diet legal food and somehow you popped up. It sounds to me from what we’ve experience that you have an overgrowth of baD bacteria in your intestinal track. Dr Natasha cambell mcbrudes book “GAPS” will blow ur mind

    • Actually I have severe celiac disease. Because it was undiagnosed for so long, it took on a life of its own and I also have hypothyroidism and ms. Thankfully it’s all diet controlled now. I basically eat some fruits, veggies except night shades and organic meat and feel great. I was checked for the bacteria, a parasite and yeast over growth – it was none of the above. 🙂 thanks for your comment!

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