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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

YES! It Tastes Great Too!

My son said these are awesome, you could probably order them by the case – like we can through our health food store. Just ask! They come in GF/dairy-free too.

Since I have a marketing background, I’m big into first impressions, how things look… how they’re packaged – and sold.

I’m definitely drawn to things that appear simple, clean, easy to read… marketed well.

Many of things I admire about a great marketing campaign – whether it’s politics, or food – is how it’s being sold.

It’s amazing what great marketing can do to the perception of the product or idea being placed in front of you. It can bring to mind images that give the “buyer” confidence in what they’re purchasing.

When we went gluten-free, it was a major GAME-CHANGER. I didn’t know any of the brands… nothing looked familiar. They aren’t “big” names that I’d see in ads, or on television (if I watched it anyway…)

So, it left me wondering… how does the food TASTE? It looks….

Different.

When you’re already not good at different… you wonder…

Different bad?

Different good?

Oh please be different good….

Well, it’s comical to me now… my kids actually say, THIS food tastes BETTER! (and they’re RIGHT!)

It can’t be “just good marketing” to my kids, because they don’t buy the products I pick out.  They just eat what we put in front of them.

I wonder… is it that there aren’t so many preservatives, obviously no gluten? Food shouldn’t have a shelf-life longer than a cat’s-life.

Maybe it’s the other ingredients…. vs. high fructose corn syrup in almost every product….

Maybe it’s the lack of GMOs?

Whatever it is…. my kids are right. A majority of the food is really great, it’s just different.

Definitely – different GOOD.

Someone gave me some advice… of brands they liked – and it was super helpful for me, as I searched for everything unfamiliar. Currently some of our favorite brands include:

Amy’s, Udi’s (which is said YOU-DEEs, not YOU-DIE like my nephew coined, that would be the other bread), Pamela’s, Enjoy Life, KIND, EnviroKids, Gluten Free Mama, Justin’s, Larabar, Nastasme, Applegate, Van’s, Food for Life, Annie’s (GF bunnies and Mac and Cheese)… although truthfully – we mainly eat fruits, veggies and organic meats. I make our own bread – and I’m still in the process of perfecting that. Stay tuned for some updates on bread and the garden this week!

“Praise the LORD, O my soul, and forget not all His benefits–

Who forgives all your sins and heals all your diseases.”

Psalm 103:3

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What’s the Difference?

What is the difference between gluten intolerance, gluten sensitivity and celiac disease?  I was curious myself, as to how some people could have a gluten sensitivity, but not have the auto immune disease.  I was also wondering how a blood test could show a negative result for having celiac disease… but the symptoms tell otherwise.

I’ve read story after story of people who have had years of testing, and even up to 10 biopsies in 20 years before getting a positive reading on an endoscopy test for celiac disease.  No wonder several doctors have said it’s NOT the golden standard, and in fact – this is why it’s OFTEN missed.

One doctor I talked to said that many medical doctors are missing the boat on following all of the clues that are pointing to gluten sensitivity…  and at this point, it seems a bit insane to me.  It seems it should be one of those first things doctors look at when symptoms point that way because of how simple the solution is, and how serious the complications can be – if you continue eating gluten.

But the truth is, if a pharmaceutical company can’t patent nutrition, or vitamins – {which is the main “cure” to the above listed conditions/disease….}  then you can see why money isn’t being spent on learning more about what all types of gluten does to our bodies, and most specifically = people who are genetically predisposed to celiac disease.

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If a patient is told their blood test is negative, or a biopsy is negative… based on the elimination method of testing, they will continue looking and testing for answers.  When the testing is FLAWED, but the symptoms STILL point to gluten sensitivity or celiac disease – THEN what is a patient to do?

What if the patient doesn’t know to keep pushing the issue?  What if they continue struggling (consuming gluten) and causing irreversible effects to their body?  THEN WHAT?

This video was one of the best I’ve seen, and it has helped me explain to others – what a few doctors, and several expert celiac books have concluded about the disease.  It solidified our decision to rest in our knowledge of our bodies, and NOT REST…  when we weren’t getting answers.

You are your own advocate in this crazy world.

I am the type of mother who doesn’t take my kids in until it’s a must.

We skipped physicals for a few years because I didn’t think my kids were sick.

Had I taken them in – perhaps I would have had a better record that some of them weren’t really growing.  Perhaps some other red flags of celiac disease would have been raised.

I feel like I’ve been to the doctor more in the past 5 months, than probably my whole life…  and I’ve never been so frustrated by lack of answers, and lack of urgency.  But it’s good to keep in mind that  doctors and nurses are people too, and they’re practicing medicine… they’re not able to know everything.

If you feel like something isn’t right, and someone isn’t listening….  it’s OK to SEEK for answers until you get the help you need.  You don’t need to feel like a head case, or an inconvenience to anyone.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.  Which of you, if your son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!  So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets.”

Matthew 7:7-12

We Broke Up…

Here it is! The first, of hopefully many, sandwich bread loaves! The kids ate it up and said it was super soft and yummy! (But not too soft, spreadable things didn’t make it crumble!)

It was a sad day.

Well, not really… I was prepared for it, but he wasn’t.

It was my Schwann’s man.

I had planned to call him before he came over… but I never seemed to get that done.  The next thing you know, he’s in my neighborhood and at my door – ready to take my order.

“I am so sorry, we aren’t going to be buying your food anymore, we have celiac disease,” I said.

“WOW.  What IS that?” he questioned.

“Basically we can’t have wheat, or gluten, things connected to that,” I simplified the answer so he wouldn’t be more overwhelmed than he already appeared to be.

“Oh wow…. that’s like, in EVERYTHING!” he stated.

“Yeah….,” I said.

“So, that’s like a WHOLE lifestyle change then.” he processed more information out loud.  “That REALLY stinks.”

“There are worse things,” I said.

There was a long silence… as if he was in denial that it was over.  He even tried to see if I would bend the “rules”… not quite understanding the magnitude of the disease.

“Some of my diabetic customers still order ice cream though, even though they shouldn’t,” he said, as if to encourage me to be unfaithful to my diet.

“Yeah… it’s not really something you can knowingly cheat on, and feel well.  It destroys your body, and I can’t function,” I proclaimed.

“Wow… okay.  Well, I guess this is good-bye?” he said.

“Best wishes with your future and sales!” I said.

With a hand shake and a head shake, he was off.

I felt badly dumping him like that.  It never feels good to dump people, when they don’t see it coming – especially, and when they’re as nice as my Schwann’s man was.

But alas, it had to be done.

Back to my clean start….

** {I realize we could probably have some ice creams from them, but I ate a life-time supply while pregnant with my 5th child.  We’ll leave it at that.}

“He will wipe away every tear from their eyes, and  death shall be no more,  neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

Revelations 21:4

Meeting Myself Face-to-Face [PART FOUR]

The bookstore was a disappointment.  While I found some great cookbooks on gluten-free/vegan, I found nothing on celiac disease.

Up and down the aisles I went.  I really started to feel discouraged.  Maybe celiac disease was SO rare, that there was NO WAY I had it.

I bought a few cookbooks, and a book on food allergies, and off I went to the library.

The library proved to be much more helpful.  I got plenty of great books and I returned home to bury myself in reading during any free moment I had.

Hands down, this book was the most helpful in realizing this described everything I was feeling.

The more I read, the more I KNEW this is what I had.  But I also realized, I probably wasn’t going to be testing positive… because I was simply not eating enough gluten.

After a follow-up appointment to my Dr for one of my children, he inquired about my health and I told him what was going on.  I asked again about the celiac panel, and he then agreed we could try that.

If only I would have known to start here BEFORE making any changes.

It was negative.

Although I wasn’t surprised, as only 15% of people diagnosed, get a positive with a blood test.  It was still a few weeks to my GI appointment at this point.  I figured I could keep a bit of gluten in my diet until my test and perhaps they could do a biopsy and it would show up.

The Dr. then ordered a CT scan.   After previously denying that test out of frustration of “tests” with no answers…  I consented to the test.  Another fairly simple test.  Fast, drink some citrus/glue-tasting stuff, [actually a whole LOT of that disgusting stuff] and with some contrast dye from an IV, they took pictures to see what was going on.  Fifteen minutes and done.  Easy.

After that test, I was reading about something called a “gluten challenge” – where a patient who has gone off of gluten must eat 4-6 pieces of bread a day for 6 weeks, to ensure there is enough to cause a reaction.  That night, I took 2 bites of a multigrain bread for dinner, and the reactions almost took me to the ER.  I bloated within 15 minutes, the pain, cramping, head issues went on for about 5 hours.  The next day I felt like I had been run over by a semi.

It was VERY difficult to eat gluten after going gluten-free.  After that day, I knew I couldn’t do the gluten challenge.  I started realizing all of the hidden places gluten liked to hang out, and WHY it wasn’t obvious to me sooner as to what was making me sick.  Not only that,  apparently, after you continue cutting more gluten out, your body reacts stronger when you try to add it back in.  I ate some salsa a day later, and on day 2 realized it was the salsa making me sick – yes, after I had ingested it TWICE.  Diarrhea plagued me after that, all Easter weekend.

That Monday, the Dr’s office told me that the CT scan was normal.  Apparently I just needed to take some laxative.  I let the nurse know my body already took care of that.  I’m pretty sure they thought I was a hypochondriac.  Ironic, since I did feel so irritable on gluten I thought I might be going crazy!

The more I read however, everything said …. the BIGGEST MISTAKE people with celiac disease or a gluten intolerance can do, is to go OFF gluten before being tested.  Personally, I don’t see how that’s possible (to stay on gluten while awaiting months of testing) – if you were like me, and realized what was going on.  The first thing you want to do – is to feel well so you STOP eating those things that make you sick, or stop eating period.  The LAST THING you want to do is to continue poisoning your body… and withering away.  I know in my heart that God blessed me with enough information to protect me from things reaching that level.  I don’t know WHY, but it’s part of the reason I feel led to share my story.

I tried to keep some gluten in my system the week before my GI test, but I knew in my heart it probably wouldn’t help.  I just wanted to try – anything to get some solid answers.

I went into the GI appointment [yes, I skipped the prep part of the story to spare you – it’s horrid, but it’s essential] relieved {literally}, to be at the end of my journey, and I awaited the answers with hope.

This is me, right before we left for my test. I actually felt really good this day. Amazing – all toxic gluten – GONE from my system!

Following my appointment, and feeling well, I tried again to tolerate some comfort foods – but after two days of severe gluten reactions, God gave me the peace I needed, to know in my heart the answer – before I had the results to the test.  I knew it would be a long shot for the results to show enough damage.  I was basically eating gluten light before February with cheese being my number one source of gluten.  Then I ate gluten-free to gluten lite after the Dr. directed me to get rid of lactose…  and I couldn’t eat the amount needed to show the test otherwise.  Not only I couldn’t, I wouldn’t.  I was sick of being sick – and looking forward to feeling healthy.

So Thursday, April 19th, I went back to gluten-free – for GOOD.  I will be meeting with my family Dr. to seek genetic testing – for the sake of our children, and I meet with the GI Dr also at the end of next month.  I have no regrets, or doubts of my diagnosis.  The past years, as I’ve been trying my hardest to eat well, exercise and feel good – my body has been slowly trying to tell me that it’s not getting the vitamins it needs, because it hasn’t been able to absorb them!  Mostly I’m thankful to know now, vs. when I have intestinal cancer.  Sadly, 27% of people who have symptoms and test negative, continue searching for what is making them sick – never retest, and they wind up being positive for celiacs disease when it’s too late.

I always had indented “spoon-like” nails when not pregnant. I just thought I had bad nails. Another sign of a vitamin deficiency that celiacs have.

I’m on day 3, and feeling great.  My swelling has gone down,  no belly aches, bloating or cramping and NO REGRETS. 🙂  I’m more clear-headed than I’ve felt in months – no more forgetting how to speak, as if I were having a stroke.  It’s only going to get better from here!

Here’s to being healthier for HIM!  (and for His peace in times of confusion!)  It’s a strange feeling, but I truly feel like God is allowing me to understanding just how He created me and I’m so thankful.  When I look in the mirror, I finally understand just how this body works!  Thank you God for helping me meet myself face-to-face and for allowing my body to be healthy enough to carry 8 healthy children. [Amazing how we are designed in such a way that would be possible – yes?]

“So whether you eat or drink or whatever you do, do it all for the glory of God.”  1 Cor. 10:31

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