Celiac Disease

We just got back from a 3-day get-away and I managed to stay gluten-free the whole time.  Woo Hoo!  I thought that is the perfect lead-in into the second installment of my health journey and the diagnosis of Celiac Disease.  To see my list of chronic illnesses you can go to my May Awareness post and to catch the first installment on PCOS go here.


Celiac disease is a digestive disorder (It's important to note that it is not an allergy) characterized by a toxic reaction to gluten - the protein found in certain grains.  It's an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten - it's genetic or hereditary, meaning it's in your gene pool; chronic, meaning it won't ever go away; and autoimmune, meaning it causes the body to attack itself.  The only known treatment is a lifelong gluten free diet.  

Symptoms

The symptoms of celiac disease can vary significantly from person to person. This is part of the reason the diagnosis is frequently delayed. For example, one person may have constipation, a second may have diarrhea, and a third may have no irregularity in stools.

A partial listing of gastrointestinal symptoms:

• Abdominal pain
• Abdominal distention, bloating, gas, indigestion
• Constipation
• Change in appetite (increased or decreased)
• Diarrhea, chronic or occasional
• Lactose intolerance (common upon diagnosis, usually goes away following treatment)
• Nausea and vomiting
• Stools that float, are foul smelling, bloody, or “fatty”
• Unexplained weight change (gain or loss, although people can be normal weight upon diagnosis)

A partial listing of nonintestinal symptoms:

• Anemia (low blood count)
• Bone and joint pain
• Bone disease (osteoporosis, kyphoscoliosis, fracture)
• Breathlessness (due to anemia)
• Bruising easily
• Dental enamel defects and discoloration
• Depression
• Fatigue
• Growth delay in children
• Hair loss
• Hypoglycemia (low blood sugar)
• Irritability and behavioral changes
• Malnutrition
• Mouth ulcers
• Muscle cramps
• Nosebleed
• Seizures
• Short stature, unexplained
• Skin disorders (dermatitis herpetiformis)
• Swelling, general or abdominal
• Vitamin or mineral deficiency, single or multiple nutrient (for example, iron, folate, vitamin K)

As you can see, there is some overlap between PCOS & Celiac symptoms to it's no wonder these things are hard to diagnose.  In addition, untreated Celiac causes infertility and in my case caused weight gain due to mal-absorption of nutrients, further confusing the two.  

When I was working in health promotion we had a doctor come in to give lectures on various topics.  One topic was Women's Health and PMS.  They had a multi-disciplanary clinic with MD's, chiropractors, physical therapists, etc and claimed to take a 1-on-1 apprach to each patient.  It seemed interesting so I booked an appointment with them thinking maybe they could help with my suspected PCOS. The immediately ran a battery of tests (like every other doctor's office I've been to) and put me on an elimination diet to flush out any food allergies.  

The results were interesting:  food allergies came back as Beef, Vinegar, Sugar & Gluten.  I now know that the vinegar is due to a strong mold allergy and that the sugar is due to the insulin resistance, but the beef and gluten are real.  I stayed on a gluten-free diet and immediately began to feel better, but not great.  My digestive upset, that I didn't even realize I had b/c it wasn't that bad, got better, I lost some weight & My headaches decreased, but I was still tired and had blood sugar swings (b/c of the uncontrolled insulin surges).  They tried to tell me it was b/c I ate desserts growing up (which we didn't) and that my carb cravings were in my head -- now I know better.  

However, the most interesting thing is that my cortisol came back WAY OUT OF WHACK.  Partially b/c uncontrolled PCOS and b/c they suspected an infection.  So ... more tests.  No infection came back.  No parasites.  So they chalked everything up to hypoglycemia & adrenal fatigue due to Celiac disease.  The chiropractor & physical therapist started me on a treatment regimen for my neck & hip pain and I was told that if I remained gluten free everything would clear up over time.  After about a year, I stopped going.  My neck & hip pain weren't that bad and I'd just learned to live with them and I was fully gluten-free at that point and feeling considerably better. Sleeping less, exercising more.  Life was looking up :)  

But, I never felt quite right.  I never got my "blood sugar" under control.  I still had Orthostatic Hypotension (feeling faint or getting a 'head rush' upon standing up).

In the next installment, you'll be amazed at how much foreshadowing there is for my Lyme diagnosis.  It wasn't until I went to my current LLMD, the one who diagnosed the PCOS & Lyme and treated me for ALL symptoms that the pieces began to fall into place.  She had me do more than an elimination diet, she actually tested me for Celiac (the genetic part & the blood antibodies both came back positive), she prick tested me for other food allergies & realized something was wrong with my immune system.  Of course, the PCOS could be enough to switch on the Celiac and together they could definitely wreak some havoc on both my hormonal system and my immune system; causing other allergies to surface.  But one thing is for sure - the Celiac is here to stay and my symptoms if I ingest gluten are worse than ever!  

So ... it makes trips a little bit hard, but we manage.  This time we didn't even plan a whole lot, but luck was on our side and we found restaurants that were willing to accommodate or that had naturally gluten free items on the menu. I'll probably experience a little bit of digestive distress due to travelling (I usually do) and may have encountered some hidden gluten (it's hard to be as strict as at home), but we're home, in one piece and without major sickness.  That count as a successful trip to me!