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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

The Winding Road… to Hope!

“You are entering a 90 acre nature preserve.  Health, hope and healing flourish here in harmony with nature.”

This sign and others greeted us on Monday morning, and I smiled… and took a deep breath.

“Is THIS it?” the kids shouted in the van.

As the road winded around slowly to the clinic… I imagined what this could finally mean for me.

HEALING.

photo_healing

When we approached the facility to meet my naturopath doctor, I honestly had NO idea what to expect…  But I hoped the kids were right.  I hoped this was IT.

Is this going to be…  REALLY strange?

Is it going to be “out there” ?

I didn’t have apprehension… as much as I did just plain ignorance on how things would be done.

It looked so peaceful… but definitely unlike most things I had experienced up until this point.

I entered “Dome 1.”

I was promptly greeted with a friendly, warm smile and a couple of helpful ladies got me checked in.  Serene music played while I looked around at the supplements, books and information offered….

Months ago, it might have appeared strange the book titles, snacks and scenery… but things like Larabars and KIND bars were not strangers to our family any more…. and a gluten-free diet promoted as the “best choice” was all we knew.

The facility was broken up into domes, which are numbered and each one had a purpose….

The second dome I was taken to – was the actual clinic for Dr. K.  While the nurse led me on our walk to do vitals, I passed several people in recliner chairs, hooked up to IVs.  They seemed in their happy place.  (later I learned they were getting vitamin IVs)  After this, she kindly escorted me to my recliner in front of a large canvas that said…”HOPE”…  exactly what I had come for a dose of.

God knew… and that brought me comfort that I was in the right place.

The calm Christmas themed music played, and I smiled and closed my eyes listening to the relaxing sounds around me as I took a little nap.  Soon it would be my turn to meet Dr. K.

It was actually the Dr. who came and escorted me to the room where we would talk for the next hour…

No computer, no distractions… just her, and a pen for my file – and lots of writing, and listening, questions… and more listening.  She said I had all of the classic signs of celiac, from stools, to malabsorption, the bloating, pain and then all of it going away until being glutenated again… and now the possibly yeast issues that have followed suit….  It was refreshing to have someone know and understand the signs of the issue at hand.  She noted my numerous metal fillings when she examined me.  Asked if I had been tested for Lyme… parasites, or various vitamin deficiencies as well…

“What about your thyroid levels….  were they fasting?” she asked.

No.  They weren’t.  She also inquired about why my T-3 hadn’t been checked, explaining that my Free T3 was low and my thyroid  was borderline…   Since they treat everyone on an individual basis, as in, “what is normal for you might not be normal for someone else.”

Wow.  You mean… we are all created differently and uniquely and might not fit the mold?  Very refreshing indeed.

She said immediately – lacking vitamin A is notorious for causing spooning on finger nails…  so added a huge dose of Vit. A, doubled my Vit. D and took my fish oil times four.  She looked for my probiotic, and explained that it was WAY too low of a dose to do much of anything…  which would explain why I would get so frustrated taking it – and give up.

So “holistic” medicine isn’t some freaky term for witch doctor…(like I might or might not have assumed).  It doesn’t mean “HOLY”…as in some type of voo-doo ritual.  It actually means treating the WHOLE body… vs. just one symptom, and searching for the source(s) of the issues.   So essentially, it’s as if these doctors look at your symptoms from your entire life… laying out your health history like a deck of cards and then trying to view you as the creation God made you – unique.   They don’t ignore all modern medicine, but rather work with your doctor…  the first line of defense is just a more natural based one, when possible.  As I’ve learned this past year – how much what we eat can have systemic affects.

After going over her suggestions for blood work, I also had some homework – but mainly we were looking at the following:

Food Sensitivities – what other foods are making my white blood cells react?  While I don’t have allergies to, it seems coffee, grains, sugar, and night shades are all issues for me right now.

Parasites – is there something else throwing off my immune system since my IgA is so low?

Metals – could my blood be filling with metals from mercury poisoning with all of my fillings?  Yes, I have a lot from my youth when my braces came off…  at least 8.

Thyroidcould an under lying issue be my thyroid not firing properly?

Yeast – could this be bogging down my immune system and poisoning my organs as well?

Cortisol Levels – could they be extremely low during the morning, and high at night?

Could Lyme disease be playing a role in my symptoms? (This part she left up to my immunologist for my Jan. appt – because it’s a high-grade of test they will do a KU med.)

photo_HOPE

Some of the results will start coming in at the end of this week, and 3 of the tests I have to do as “homework” within the next week and then mail in…  with the results taking about 3 weeks to return.  I scheduled my follow-up in 5 weeks… which I feel ok with – because I feel like something is going on, and in the mean time – I will be seeing the immunologist as well.

So there you have it.  I definitely felt like Dr. K was getting on it…. not just “one test” and wait… “another test…” and wait.  She listened, looked at my labs, looked at my history… and we talked about my stress levels.  She seemed to really have a great knowledge about celiac, and was able to know what we needed to be looking at for the years of damage I had endured.  It put my mind at ease.  I felt understood.

Total cost of the day, wasn’t cheap.  (Only $200 for the initial visit, the rest was tests I had to approve, or decline).  My husband and I had decided on a budget before the trip, and we had decided it was worth it to us.  It was submitted to insurance…. we’ll see how claiming goes.  Not all states require a naturopath to be licensed.  In Kansas, they do.

“We are therefore Christ’s ambassadors, as though God were making His appeal through us.”

2 Cor. 5:20

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