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| Did you diagnose yourself with celiac disease? If so, you are not alone! Here's my story! |
Did you diagnose yourself with celiac disease?
Are you having health issues that you can't figure out, so you're thinking about giving a gluten-free diet a trial run?
Did you have the celiac disease blood test, but it came back negative? Maybe, you don't have insurance and can't afford the biopsy, but you don't want to go back to eating gluten because you know what it does to you.
If so, you're probably getting a lot of ridicule and opposition about not forking over the cash to get that official diagnosis.
While blood work and biopsy can help if you aren't fully committed to a gluten-free diet, it isn't always the best option. Here's why I decided to diagnose myself with celiac disease.
When people self diagnose themselves with celiac disease, they tend to get a lot of flack from the media and even the celiac disease community.
The gluten-free folks (the ones with non-celiac gluten sensitivity - NCGS) are more understanding of the reasons why someone might feel compelled to self-diagnose.
But there is a strong misconception among news reporters, dietitians and nutritionists, celiac organizations, and even celiacs themselves that self-diagnosing is never the right option.
What none of these sources tell you is that getting tested for celiac disease is not as easy as making an appointment with your doctor.
The following celiac story will make that quite clear.
In those days, there was no such thing as non-celiac gluten sensitivity. Even Dr. Fasano was turning away patients who had gluten symptoms but tested negative for celiac disease.
You either had celiac disease or you did not.
For me, a gluten-free diet is essential. And, here's why:
Difficulties of Getting Diagnosed with Celiac Disease
The average person with celiac disease travels from doctor to doctor for up to 10 years before being diagnosed.
Keep in mind that this is only for the average celiac.
Due to the long-term symptoms I had, the additional autoimmune diseases and inherited conditions that began to manifest in the 80s, plus the bleeding issues that I became aware of right after giving birth to my first son, I honestly believe I've had this condition for most of my life.
My neurological and vestibular issues have improved by going gluten free, but will never be completely healed.
Over 80 percent of those who have celiac disease have not been diagnosed yet. Many have been misdiagnosed with other conditions as I was. The odds of getting a correct celiac diagnosis, or even a gluten intolerance diagnosis, is not in your favor.
That's the hard truth.
Looking back now, I can see that the symptoms of celiac disease were there all along, but the health issues were treated as individual health problems.
In general, doctors don't see the hundreds of gluten intolerance symptoms as an interconnected web for the same autoimmune condition because there are so many symptoms, and because the combinations of symptoms can be endless.
Plus, most doctors won't test you if you don't look super-thin and malnourished. If you are an overweight celiac, getting a diagnosis can be an uphill battle, even today.
That's my reality.
Celiac Disease Symptoms I Had Growing Up
Growing up, I experienced a lot of sinus and kidney infections, as well as stomach aches.
Unexplained rashes and headaches were common, and I was always getting sore throats, which the doctor attributed to tonsillitis. Back then, the medical community wasn't as quick to remove infected tonsils as they are today, so I learned to live with the recurring symptoms.
I still have my tonsils, by the way, and they no longer bother me at all.
At eight years old, I had 8 or 10 cavities the first time I went to the dentist.
Being mindful of taking care of my teeth didn't help. They still turned yellow, and I needed additional cavities filled as I grew older.
As an adult, every time a dentist works on my teeth, for any reason, they crumble and fall apart. Even after being gluten free for years, they still do. Eventually, I also had many of my teeth pulled instead of being repaired.
I got tired of spending the money.
I even had one dentist refuse to give me a simple check up because I had so many mouth sores. He forced me to reschedule.
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| Having bad teeth is a symptom of celiac disease. So are mouth sores, canker sores, and yellow teeth. |
My sister and I used to laugh about our chicken skin as kids. That was the only way we knew how to describe the red bumps on our arms and legs. I also had a large number of moles. I tried to get a doctor to remove them once, but he shrugged me off.
Health insurance only paid for mole removal if I was at high-risk for infection.
Life as an Undiagnosed Adult
Although I had experienced a lot of cramping and abdominal pain growing up, I didn't find out I had a bleeding problem until after my first son was born. Up to that point in time, I never thought about how long it took my blood to clot.
I had to stay in the ICU for two days after giving birth because the nurses couldn't get the after-delivery bleeding to slow down, let alone stop. When your blood doesn't clot, it's a sign of Vitamin K deficiency, very common in celiacs.
Vitamin K is very prevalent in our food supply, but when you don't absorb vitamins and minerals properly, it can create a lack of Vitamin K in the bloodstream. This is often due to inflammation of the upper small intestines.
Fatigue was also a big part of my adult life, and I was always getting a stiff neck.
Most people thought I was lazy because they didn't understand how exhausted I always felt. My then-husband used to get mad because I never felt well.
I also bruised easily.
Eventually, I started throwing up in the morning, almost every day, even though I wasn't pregnant, but no one knew why.
Bronchitis was frequent, transforming itself into walking pneumonia at least once or twice a year.
I was also quite sensitive to scented products and other chemicals, so I'd have violent coughing fits hard enough to throw up.
The doctors put me on several rescue inhalers, one preventative inhaler, Flonase nasal spray, and other allergy meds for what they said was uncontrolled asthma -- even though they never tested me for that condition.
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| Doctors thought I had asthma because I found it difficult to breathe and experienced coughing fits |
During this time, I needed a physical for work.
I had gotten a job in a group home for developmentally disabled adults, and they wanted to know if I was physically strong enough to do the job.
The doctor who performed the physical for work told me my thyroid was enlarged, so I needed to see my Primary Care Physician right away.
The primary doctor disagreed.
He said my thyroid was not enlarged, but ran the tests anyway. My TSH was 4.9, not yet the 5.0 that would have diagnosed me with being hypothyroid, so he told me my thyroid was working just fine and refused to treat it.
He did diagnose me with pre-diabetes.
My fasting blood glucose level was quite high. At 121 mg/dl, it was slightly less than the 126 mg/dl needed for an official diabetic diagnosis, but he assured me that I would be miraculously cured of the impending diabetes if I:
- started exercising at least two to four hours per day
- ate lots of chicken breast
- managed to lose 10 pounds
On the Sugar Busters plan you eat two servings of starchy carbs a day. Plus one extra serving three times a week.
This allowed you to have a whole-grain sandwich for lunch and a starchy side dish at dinner a few times during the week. You could also have a piece of fruit for a snack in the afternoon.
The carbs recommended were whole grains, such as 100-percent whole wheat bread, sweet potatoes, and brown rice. This was in addition to the fruit and vegetables.
But even with the nice drop in weight, my health didn't get better.
It got worse.
This Primary doctor also treated me for asthma with several treatments of Prednisone, after which he yanked me off the med all at once, without any tapering.
His justification was that new research was showing that it wouldn't hurt me to do it that way. He was also having me take double and triple the amount of rescue meds than were safe.
In fact, the pharmacist refused to fill the prescriptions until the doctor changed the instructions on the bottle.
The doctor complied with the pharmacist, but told me to ignore the instructions on the med bottle and do as he said, instead.
If you're unfamiliar with Prednisone, it's a super-strong anti-inflammatory drug that replaces the work that cortisol does in the body.
When you shut it off cold turkey like that, it messes with adrenal function because your cortisol levels will be super low and you won't have enough cortisol to signal the liver properly about the condition of your blood sugar.
Cortisol is a stress hormone. It is responsible for energy maintenance. It tells the liver when to convert glycogen into glucose for a current emergency situation or strenuous exertion. It also coaxes the body to use its fat stores to prevent starvation.
Low cortisol is just as damaging to the body as elevated cortisol levels are.
The Long, Never-Ending Path to Diagnosis in California
I went into menopause before the age of 40. This is another strong indication that I had celiac disease, even then.
It was a wacky time for me.
I started having extremely irregular menses. Initially, I had two 10-day menses per month, but eventually, they flipped the other way. I'd have one that lasted 6 to 8 weeks at a time, and then I wouldn't have another one for 3 or 4 months.
The doctor told me there was nothing he could do about the hemorrhaging unless I was iron deficient, so I spent hours in the shower because the hemorrhaging was so bad.
I couldn't go anywhere without at least one set of extra clothes with me because I never knew when I was going to start hemorrhaging. The doctor put me on iron supplements, due to the bleeding issues, but never called back to check up on me.
While erratic menses, hot flashes and red cheeks are common during menopause, they are also extremely characteristic of celiac disease, along with all of the other health problems I've suffered with for most of my life.
Folate deficiency rashes are also common, but at least, I knew how to fix those.
As the months went by, I grew more and more tired. I also became irritable due to muscle and joint pain. Common complaints were:
- depression
- nausea
- angry outbursts
- dramatic hair losses
- very dry skin
- ear infections and pain
- heartburn
- edema and water retention issues
- peripheral neuropathy
- lactose intolerance
I was angry and in pain all of the time. I would lash out for no apparent reason. I knew I was doing it, but I couldn't stop myself.
Once the kids graduated from high school and moved out, my then-husband decided he wanted to get divorced. He believed that I was going to leave him, without the kids to hold me there, so he left first.
There was a lot more to this break up, of course, but this is the story that he told everyone.
He has what I call Jungle Mentality: I'm going to hurt you before you can hurt me.
Things did calm down some after that, due to the lack of stress in my life. I started seeing a good friend of mine, which helped a whole lot, and a year after I filed for divorce, we got married.
During this time, I started to experience a lot of constipation.
About a year after I remarried, I got vertigo.
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| What the world looks like when you in the middle of a vertigo attack |
(This photo is actually much better than it is. While vertigo does happen this way, picture the sides of the tunnel going in different directions, and the photo will be closer to what it feels like much of the time.)
One minute, I was laying in bed talking to my hubby, and the next minute, after trying to stand up to get ready for work, the room instantly started spinning.
Only, it felt like the spinning was going on inside my head. Needless to say, I helplessly collapsed back onto the bed.
Things really went downhill after that.
The medical care I received in California was a joke. The only help I got for the vertigo, vestibular malfunction, and off-balance problems was more shuffling between doctors.
I spent a month on antibiotics for an ear infection I didn't have. "Just in case,” that doctor said.
This was a different doctor than the one that diagnosed me with pre-diabetes. My blood sugar test was normal by this time. I'd been on a low-carb diet and it had done a good job at managing that problem for me.
The EKG was abnormal, but the doctor said the abnormality wasn't related to what was happening and not to worry about it. He refused to tell me what that abnormality was.
The audiologist he sent me to told me that my balancing mechanisms weren't functioning anymore, and that the sudden, overnight hearing loss was due to my age and not the vestibular dysfunction. He also told me tinnitus was normal for my age.
The neurologist put me through a series of tests and told my Primary Care Physician she thought I had Meniere's Disease, but he rejected that suggestion.
The MRI of the brain, ordered by a substitute doctor when my regular doctor was out of the office, came back normal.
My carotid artery was clear.
My liver enzymes were elevated and my CRP marker was off-the-charts, both strong indicators of celiac disease, but the doctor gave me a prescription for statins and told me to come back in a month if I didn't get better on my own.
He believed the inflamed blood was a symptom of artery disease. It's actually a symptom of an autoimmune condition known as Behcet's disease that runs in my family.
Generally found in eastern Mediterranean countries and eastern Asia, Behcet's is very rare here in the U.S. The central nervous system, the heart, and intestinal tract can all be involved.
Behcet's disease is very difficult to diagnose, but is what my youngest son actually believes I have because it gives you gluten intolerance and sometimes, celiac disease, depending on where the damage occurs.
I reluctantly took the statins for two or three days.
My ankles swelled as large as grapefruits, so I threw the pills away. It was crazy to give me statins when my liver enzymes were already elevated. As soon as I stopped taking the medication, the swelling in my ankles went down.
In the meantime, the Ear, Nose, and Throat specialist (ENT) I was sent to next told me he didn't know very much about my condition, except that vertigo wasn't fatal, and the damage to my balance mechanisms was permanent.
Since I was on 25 mg of Meclizine three times a day, and the Meclizine was taking the edge off the vertigo spins (I was able to walk with hubby's support), he refused to give me a prescription for Valium, the standard treatment for Meniere's Disease back then.
He also told me to stop being lazy, go back to work, and learn to live with the vertigo attacks.
I was a supervisor at a developmentally disabled workshop for adults at that time. They laughed. “This isn't a sit-down job,” they said. “Send us your resignation in writing.”
Throughout all of this:
I was bedridden.
I couldn't walk by myself.
I couldn't feed myself.
I couldn't shower or dress myself.
I was totally dependent on others to take care of me.
I would crawl from the bedroom to the bathroom and back again each time I needed to throw up.
Although, I'd been trying to relearn how to balance myself, I couldn't walk without help. I could use the furniture and electric piano to lean against and hold myself up, but I couldn't walk across the room without falling.
I had to literally crawl to get to the sofa or front door by myself.
Still, the doctor was reluctant to officially diagnose me with Meniere's Disease, or anything else for that matter.
His justification was that Meniere's Disease is a lengthy set of symptoms, and not just vertigo. Hubby told him I had every single symptom on the list that we found online, but in his professional opinion, he felt I didn't fit the profile.
He also refused to sign my California State Disability form again. He said I wasn't disabled until a specialist told him I was disabled. Instead of filling out the forms, he wanted to send me to their Internist department for another evaluation.
Hubby explained that without state disability funds coming in, we couldn't afford any more testing. Hubby was working for a temporary agency at the time.
But the doctor wouldn't budge.
"You are not disabled," he said again, "until a Specialist tells me you are disabled. I'm not filling out the form."
The irony of this is that the neurologist he sent me to IS a specialist who told him I had Meniere's Disease and was, therefore, disabled, but he had rejected her professional opinion because it didn't fit his own.
I couldn't walk by myself, so I struggled to stand up. I had heard enough.
I was done, and hubby knew it.
He helped me stand up and supported me as we walked out of the room together and never went back.
Help Arrived in an Unexpected Way
We moved to Utah in 2004.
Didn't see any sense hanging around Southern California if I couldn't get disability benefits.
Without benefits, I couldn't afford to see another doctor, and an online friend told hubby he'd hire him as a carpenter if we moved to Utah. So, that's what we did.
Within 30 days after moving, a chiropractor I was friends with online offered to see me for free. He thought he knew what was wrong with me and offered his help at no charge.
At first, I thought he was nuts. I totally ignored the offer. What did my spine have to do with any of this?
But after having another major vertigo attack in the backyard one day, hubby felt it was worth a chance. All it was going to cost to check him out was the gas it took to get there.
Turned out:
My neck was dislocated.
That rotated disk wasn't the underlying cause of the vertigo, it had occurred a few years prior to that, but it was interfering with the body's energy flow and preventing the brain from adapting to the spinning.
Resetting the neck did wonders.
Hubby practically carried me into the chiropractor's office, but once my neck was reset, I walked out by myself. Things stayed good until we stopped at a burger joint on the way home, and my neck fell back out of place.
I Taught Myself How to Walk Again
After that, I started chiropractic treatments twice a week to encourage the neck to stay put.
With blossoming hope that I didn't have before, I ramped up my efforts at teaching myself how to walk again. It was easier with the treatments because I wasn't spinning every single moment of every single day anymore.
I actually had a few good days now and then, in between treatments.
During the months that followed, I went from being bedridden to being partially bedridden, so I was absolutely thrilled with the results! Now, I only had to spend part of my life in bed. Those vertigo spins were no longer an everyday all-day thing.
I went from a 24-7 vertigo existence, where I lay in bed for hours watching the room spin around me, or sleeping, to being episodic.
Facing the Truth About My Weight
In December of 2006, I came face-to-face with the fact that my weight had taken a sharp rise due to the lack of activity. I had gained a whopping 80 pounds over the last few months, even though I wasn't eating enough to justify the weight gain.
I also had new health issues to add to my already lengthy list of recurring celiac symptoms.
My right knee was severely swollen. This was simple arthritis, I think, but the pain in both my feet was so unbearable by this time that I couldn't go to the bathroom in the middle of the night without having to put on high-top tennis shoes.
I thought both of these problems were because I was fat.
Since I was able to get along in the kitchen, somewhat, I returned to a low-carb diet in January of 2007.
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| After returning to a ketogenic diet in 2007, I shed over 100 pounds by trimming the fat and calories |
I lost the 80 pounds by tweaking the Atkins Diet to be something closer to Lyle McDonald's Rapid Fat Loss Diet.
The Rapid Fat Loss Diet is a Protein-Sparing Modified Fast (PSMF), which is low in carbs by default. You eat adequate protein to spare muscle wasting, a few fibrous vegetables, and take fish oil capsules for essential fatty acids.
Other than the fish oil, dietary fat is very low.
Later on, I went on to lose over 100 pounds, after doing a round of HCG, but it wasn't easy. I was in starvation mode already, due to the celiac disease, so the body fought hard to hang onto its fat stores.
Due to the lack of activity and malabsorption issues, I had to eat far less fat and calories on keto than the average ketogenic dieter to get the weight to come off:
- 72 to 90 grams of protein
- 60 grams of fat
- 20 total carbs (not net)
I lost 1 to 3 pounds a week eating that way.
However, even with the weight loss and continuing chiropractic care, my health didn't improve.
In fact, it was still getting worse.
As the weeks turned into months, and I flipped back-and-forth between my own diet and Atkins, symptoms multiplied. I began having:
- heart pains
- digestive problems
- bloating
- painful gas and cramping
- severe diarrhea
- low-carb products
- keto specialty ingredients
- alternative flours like high-protein wheat starch isolates and pure wheat gluten
Every time I went back to a low-carb, low-fat, whole foods diet, the symptoms surprisingly cleared up, and I began to honestly feel good for the first time in my life.
When I wasn't dieting that way, if I just ate a standard Atkins diet, I would feel sick and tired again.
Today, I believe that this is because I was eating gluten free on the low-carb low-fat plan and wasn't gluten free when I did Atkins.
A New Round Of Doctor Visits and Testing
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| My blood glucose levels were high after meals, but the doctor called that a fluke |
When I tried to return a few good fats to my diet, I started to regain some of the weight I'd lost. Frantic and afraid that I would regain, I bought a blood glucose meter (affiliate link) and started checking my blood glucose level after meals.
I didn't know what else to do.
My blood sugar was not normal. It would go very high after meals and take hours to go back down.
This is another sign of celiac disease. Eating gluten can cause your blood glucose to go sky high due to the continuous elevated cortisol, as well as weight gain.
You don't always lose weight with celiac disease. It just depends on how your body reacts to the starvation mode it causes.
After taking a diet break from the low-carb lifestyle and eating a couple of slices of pizza for my birthday, I spent all night up with a racing heart.
That was the last time I ever ate a regular pizza.
Eventually, I moved to a maintenance diet trying to get the weight to stabilize. On maintenance, the weight gain stopped but my celiac symptoms got worse.
The heart pain returned and the digestive problems, bloating, abdominal pain, and diarrhea came back with a vengeance.
On top of that, I was also still having a lot of bleeding issues. I had to be extra careful in the kitchen so I wouldn't cut myself because it would take forever for a cut to clot and stop bleeding.
Unfortunately, my brother-in-law had a heart attack during this time, which resulted in an emergency triple by-pass surgery for him.
Because of the seriousness, hubby thought it was time that we both went to the doctor.
He was concerned about our cholesterol levels and the condition of our hearts since we'd been eating low carb for so long. We didn't have health insurance, so we paid for everything ourselves.
I didn't have any better luck with medical care in Utah.
Although I was only shuffled to a new doctor for specific treatments, such as a gall bladder operation and having my heart and arteries checked for calcium deposits, the results of the extensive testing miraculously came back normal.
The cardiologist couldn't believe how clean of calcium deposits that my arteries and heart were. The heart monitor I wore for 24 hours didn't show any electrical abnormalities, either, even when I was suffering pain.
In fact, the Primary doctor told me pretty much the same thing. Despite the:
- elevated blood sugar after meals
- intestinal discomfort
- severe heart pains
My A1C was so good, she even un-diagnosed me with pre-diabetes and told me my blood sugar readings after meals were a fluke.
My kidney function was excellent, and my elevated liver enzymes had surprisingly returned to normal.
The only thing she could diagnose me with was idopathic neuropathy, but that's because she hadn't addressed the vertigo yet. Idopathic means I had neuropathy, but she didn't know why. It was not due to a B12 deficiency, nor diabetes.
Since she was a new doctor for us, she also wasn't aware of my falling TSH, so she didn't catch the Graves' Disease either. To her, my thyroid function looked excellent at 2.1.
Even a year later, when the TSH fell again to 1.2, she still was thrilled that I was doing so well. She couldn't see the downward trend from the original 4.9 at all.
She also missed the PCOS due to my age, I think.
She told me the cysts on my ovaries, discovered during a sonogram she had done before scheduling me for a biopsy to check for uterine cancer, meant I was still ovulating. She also said the:
- menstrual irregularities
- facial hair
- painful fibroids
- high testosterone level
It wasn't.
The Article that Changed My Life
By this time, I had totally lost faith in the medical profession. I was seriously ill, and no one was listening.
The pain and intestinal distress that led to having my gallbladder removed was still there, but now it was thought to be caused by the missing gallbladder and inability to digest fats.
I was told I'd just have to learn to live with it, even though I couldn't leave the house without knowing where a bathroom was at all times.
The daily pain and multitude of symptoms was really wearing me down. I was finding myself in bed again, more often than I wanted to be. The vertigo had grown worse, probably due to the physical pain and stress.
As a result, I decided to do my own research online and see if I could figure out what was going on for myself.
I don't remember how I landed on an article discussing celiac disease, but today, I'm grateful I did. It listed the various symptoms, associated conditions, and autoimmune problems one might experience if they had that autoimmune condition.
After reading through the article a couple of times, I sat there for something like 30 minutes . . .
not breathing . . .
and completely stunned.
Every single health complaint and symptom I'd had since I was born was on that list!
Every single one!
There was no cure for the condition and no meds involved in treating it, but the autoimmune response could be controlled by a gluten-free diet. Biopsy was the gold standard for diagnosis, but I wasn't sure I wanted to do that.
Going back to the doctor for blood tests and biopsy would add another $8,000 to the $15,000 burden we were already carrying from the tests we'd had performed so far, plus my two operations.
I didn't think our finances could bear any more, and since non-celiac gluten-sensitivity did not exist then -- you either had celiac disease or you didn't.
So, I decided to do a 30-day gluten-free experiment.
My 30-Day Gluten-Free Experiment
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| Shopping for gluten-free groceries was extremely difficult during my 30-day gluten-free experiment |
My nutritional background involves testing for food sensitivities, so I already knew how to create and implement a gluten-free elimination diet. For that reason, I decided to go gluten free for 30 days, and then decide if removing gluten for the rest of my life was a viable solution.
I honestly didn't understand what I was getting myself into.
The article only talked about the potential for having celiac disease, and how easy it was to fix with a gluten-free diet. It didn't mention cross contamination or the extent you have to go to in order to stay safe.
The first time I went to the grocery store, reading labels took me several hours. And that is not an exaggeration.
It was frustrating trying to find enough gluten-free groceries to feed the two of us for a single week. I didn't have a grocery list handy, nor even a rough idea of menus, because I didn't have a clue what was safe to eat and what wasn't.
I was flying blind.
All I had to go on was the contradictory information available on the web.
Shocked to discover just how many grocery store products contained wheat or generic terms like modified food starch and natural flavorings, I felt confused, lost, and alone.
This wasn't going to be simple at all.
Even more disturbing was the fact that the lessons I'd learned eating whole foods in the 80s were not going to help much.
In the 80s, there was a decent amount of whole-food products available. You could easily find canned tomatoes, tomato sauce, and refried beans in your local grocery store without flavorings, additives, and preservatives.
In 2008, that was no longer the case.
However, I knew that if I didn't do this 30-day experiment correctly, it wouldn't do much good, so I set to work coming up with a realistic plan to eat gluten free.
What Happened During the Gluten-Free Experiment?
For the first couple of weeks, I felt really, really good.
The diarrhea stopped within the first couple of days, and I even saw a dramatic improvement in the vertigo.
But then, everything went a bit south.
I didn't know that you have to completely wash down your kitchen and replace a lot of your kitchen supplies because they are contaminated with gluten.
Many bloggers and celiacs commenting on blogs believed it wasn't necessary to go to that extent to say safe. "Just toss everything into the dishwasher," they said, "and you'll be fine."
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| You have to replace your deep frying to avoid cross contamination with gluten |
So, I felt pretty confident that I could easily clean up our deep fryer without a problem.
I didn't use the deep fryer during those first two weeks, but at the half-way point of the experiment, due to what I had read online, I thought I could dismantle the whole thing and clean it well enough to use.
I literally took the machine apart, scrubbed every nook and cranny spotless, every little working part, and then put the deep fryer back together again.
However, that Hamilton Beach deep-fryer (affiliate link) didn't clean up like I thought it would. Unfortunately, it was still contaminated with gluten, so I made myself extremely ill the first time I fried us up a batch of french fries.
So ill, in fact, that it literally took 6 to 8 weeks to recover from that single glutening.
Later on, we did purchase a new fryer, but before that, we gutted the kitchen, took a trip to our local dollar store, replaced everything as cheaply as we could, and basically started over at square one with a newly stocked kitchen.
Granted, the dollar store offered cheap supplies, but it got me through the first few weeks until we could afford to buy better quality kitchenware one at a time.
Why I Self-Diagnosed Myself with Celiac Disease
In 2008, there was no such thing as non-celiac gluten sensitivity.
At least, not officially.
Although, a few medical professionals believed that gluten could affect other areas of the body and pointed to dermatitis herpetiformis as justification for that belief, it wasn't a common perspective.
The landmark study on gluten intolerance performed by Dr. Fasano and colleagues wasn't released until early 2011.
In February of 2012, Dr. Fasano and other prominent researchers released a statement, explaining how to tell the difference between gluten ataxia, gluten sensitivity, and celiac disease.
But up to that point in time, February of 2012, you either had celiac disease or you did not.
In fact, Dr. Fasano once shared how he used to turn patients away who appeared to have trouble with gluten but didn't test positive for celiac disease. This is because Dr. Fasano only believes in what can be proved scientifically.
Until something can be proved scientifically, it does not exist.
By the end of my 30-day experiment, it was quite obvious that I was negatively impacted by eating foods that contain gluten. This fact was pretty clear after violently reacting to that contaminated deep fryer.
The digestive issues, neuropathy, and abdominal pain were gone, and while they had returned for several days after using the deep fryer, that only made it more obvious to me that gluten intolerance was the condition that everyone had been missing.
At that point:
I diagnosed myself with celiac disease
I didn't need a doctor, or even a biopsy, to tell me that gluten was making me sick.
I had lived through all of that for myself.
Neither could I justify spending $8,000 on blood work and a biopsy if a gluten-free diet was the only method of treatment available, especially since you either had celiac disease or you did not.
For that reason, I chose the path of self-diagnosis rather than going back onto a high-gluten diet for 12 weeks to get accurate blood work and a biopsy done.
I didn't see the point.
Plus, doing that would have probably landed me in the hospital because you have to eat enough gluten to destroy the villi in your intestines again.
Granted, today that self-diagnosis is questionable.
I understand that I could be in the other category. I could have non-celiac gluten-sensitivity or Behcet's disease instead of celiac disease.
But there is no way to know without putting myself through a gluten challenge, and I am not willing to do that.
I had been calling what I had celiac disease for so long that even after gluten sensitivity became a thing, I continue to refer to myself as being a celiac.
A super-sensitive celiac because I experience symptoms at super low levels of gluten contamination.
What I know:
I have run a couple of gluten challenges myself over the years just to make sure that the original assessment was accurate.
It was.
To both challenges, the reaction to gluten ingestion was quite violent: explosive diarrhea within 2 days and tons of gut pain.
Also, many of the previous symptoms that had gone away returned and stuck around for several weeks after the challenges were over.
There is no doubt in my mind that gluten is the problem and no doubt that I need a gluten-free diet. For me, a gluten free diet is essential for life, even if I don't actually have celiac disease.
What About the Vertigo?
Today, the vertigo and ataxia still exist, even though they are not as problematic as they were before. I've also been diagnosed with Graves' Disease (hyperthyroidism).
Unfortunately, the neurological damage from going so long without a celiac diagnosis appears to be permanent.
Recent research has found an autoimmune subtype of Meniere's Disease, where the body attacks the inner ear, so maybe that's what I actually have. Other research has pointed to Meniere's being a lack of adequate blood flow to the brain, due to inflammation. This also has merit.
But no one honestly knows yet.
To me, it really doesn't matter what you want to call it. While the:
- vertigo attacks
- balancing problems
- sensory issues
I'm completely OFF all meds.
Due to on-going chiropractic care, a gluten-free diet, and moving to Texas, I'm able to live a normal life now. That's definitely something I didn't have before going gluten free.
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Have you diagnosed yourself with celiac disease or non-celiac gluten sensitivity? If so, I'd LOVE to hear from you!
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