So, You’ve Got a Diagnosis...
Now What ??©
Settling In
with a Celiac Disease Diagnosis©
28 Mar 2015
Developed and Presented by JoAnne Murray
[email protected]
The Journey Begins
 You have entered a life-long journey that will
assist you in returning to better health, renewed
energy and greater enjoyment of life.
 You are the principle player in this journey and
there are a number of things that will make your
journey easier.
Medical Considerations
 Currently, there are no guidelines for follow-up
medical care after a Celiac Disease diagnosis.
 In some instances, your GI Specialist will continue
to follow your care for a number of months/years.
 More often, they will return your care to your
family physician who may not be well versed in
Celiac Disease management.
 This presentation is intended to give you some
resources to open the conversation with your
physician (and all other health care professionals) and
establish a follow-up plan.
Drawing from the Experts
 The medical references in this presentation have
been drawn from books and conference
presentations written by the following recognized
Gastroenterologists, who are considered experts
in this field.
 Dr. Connie Switzer
 Dr. Alessio Fasano
 Dr. Joseph Murray
 Dr. Peter Green
 Dr. Daniel Leffler
 Drs. Sheila Crowe and Ian Blumer

A complete list of these references is available.
Setting the Plan
 The experts generally agree that all patients
diagnosed with Celiac Disease benefit from
following these recommendations:
 Education about Celiac Disease.
 Consultation with a skilled dietitian.
 Lifelong adherence of the Gluten Free Diet.
 Identification and treatment of nutritional
deficiencies.
 Checking bone density
 Access to a support group.
 Long-term follow-up by a multi-disciplinary
team.
History of TTG
antibody blood screening test
 The TTG antibody test first became available in Calgary
~2003.
 The TTG test was incorporated into the standard lab
requisition ~2007.
 It’s still comparatively new.
 The availability of this test changed the face of Celiac
Disease.
 It made it easier to identify CD in people who had not
previously matched the criteria.
ie without classic symptoms
 The flood gates were flung wide open. Nobody could
have predicted the impact.
 The medical community has been overwhelmed
with positive screening results.
 The Gastroenterology community has not yet
developed new guidelines for follow-up care that
address all the patients with non-classic
presentations.
 As a result, Family Physicians have few guidelines
for follow-up care.
 The non-classic presentation of symptoms
impacted the understanding of Celiac Disease.
Only ~40% of adult celiac patients currently being
diagnosed present with classic symptoms.
 It’s a work in progress.
Medical Follow-up
 Establish your current state of health.
 Most people, at the time of their CD diagnosis,
have neglected their annual medicals for several
months to several years.
 Make certain that you have had a current
thorough medical, including all diagnostic tests
appropriate for your age, gender and your
personal and family history.
 If you haven’t already done so, this is the time to
get copies of the results of all your diagnostic
tests. (Keep them in a binder. Take them to your medical appointments,
including appointments with dietitians and pharmacists.)
Tests with an Annual Medical
 Most Annual Medicals will include such tests as:
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CBC
Electrolytes
Urinalysis
Lipids
Glucose
 And additional tests based on your age, gender and personal and
family history.
 It is of note that lab results from this visit (these visits) may show
persistent :
 Elevated liver enzymes
 Low cholesterol
 Low blood pressure
 As well as common deficiencies of vitamins and minerals.
 All of these are often associated with undiagnosed CD.
Post Diagnosis – CD Follow-up
 Most gastroenterologists (our experts) recommend
follow-up care that includes:
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Celiac markers: TTG (or DGP)
CBC (complete blood count)
Iron studies (including ferritin)
Fat soluble Vitamins: A, D, E, K
Water soluble Vitamins: B12, C, Folate
Minerals: Calcium, Zinc, Magnesium, Phosphates, Selenium,
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Electrolytes: Sodium, Potassium, Chloride
LFTs (Liver function tests)
Hormones: TSH (thyroid), PTH (parathyroid)
Fasting glucose
Homocysteine
Copper
Bone Mineral Density
 A base line bone mineral density (BMD) study
should be done soon after diagnosis.
 DEXA method should be used. In Calgary, these exams
can be arranged through EFW, RCA, Canada Diagnostic, and the
RRDTC.
 All reassessment exams should be done on the same equipment.
TTG Blood Tests
 TTG blood tests should be done regularly (every few
until the numbers return to normal and
periodically thereafter.
months)
 The TTG levels often return to normal before the
small intestine has completely healed.
 TTG tests provide a measure of longer term healing
but do not provide information about incidental
gluten ingestion.
Repeat Biopsy
 Some GI Specialists recommend a repeat biopsy 1-2
years after diagnosis to assess the degree of healing.
 Some GI Specialists recommend a repeat biopsy only if
symptoms persist, lab results have not returned to
normal, and/or healing seems to be delayed.
_________________________________________
 Failure to comply with the GF Diet is the most common
cause of delayed healing and persistent symptoms.
 Review your diet with a dietitian.
Other Conditions
 It may be necessary to monitor for additional gut
related conditions:
 Lactose intolerance
 SIBO (small intestinal bacterial overgrowth)
 Pancreatic insufficiency
 Microscopic colitis
 Gastroparesis
 GERD (gastro-esophageal reflux disease)
 Functional dyspepsia
 IBS (irritable bowel syndrome)
 *Crowe/Blumer
Dietary Management
 Do you need to see a Dietitian? Yes! Yes! Yes!
Don’t try to do this alone.
 When you have Celiac Disease, food is your
medicine.
 Take your current lab results with you to all appointments.
 Consult a dietitian (one who is very knowledgeable about
Celiac Disease and the Gluten Free diet)
healthy gut healing.
to get started on
 Identify and select foods that are optimal to
support healing and nutrient rich foods to
normalize deficiencies. (Foods that you enjoy.)
 A dietitian can provide you with practical
information as well as the science behind the diet.
 Follow up with your dietitian periodically. As your
health improves, and your lab results normalize,
additional adjustments to diet may be necessary.
 Many people with CD continue to have some
difficulty with fat absorption after diagnosis and
must make special effort to assure that they are
getting the recommended intake of fat soluble
nutrients.
 If this is a concern for you, discuss it with your physician,
dietitian and/or pharmacist.
 In Calgary, you can self-refer to a dietitian by
calling ...
 Alberta Healthy Living
Well)
403-943-2584
(formerly Living
 Celiac Disease – Going Gluten Free
 As well as arranging 1:1 appointments.
 If you have additional dietary considerations, provide that
information when booking your appointment.
 With the increasing recognition of CD in the Indo-
Asian community, there are now 2 dietitians fluent in
Punjabi and Hindi available to counsel members of
this community. 403-955-6856.
Dental Care
 Many people experience canker sores (aphthous
as well as poorly managed periodontal
disease prior to diagnosis.
ulcers)
 Canker sores often resolve completely on the GF
diet. Periodontal disease usually becomes easier
to manage.
 Many people find that the number and frequency
of cavities reduces once stabilized on the GF diet.
 This does, however, require good oral health practices.
 Make certain that all your oral health providers
(dentist, hygienist, periodontist) are aware of your CD
diagnosis to assure that all care practices and
products are compatible with the GF diet.
 Make certain that you are choosing and using GF
oral care products.
*Most dental products are GF. Always check with your care providers.
Pharmacy Care
 Are you taking any medications and supplements?
 Notify your pharmacy of your celiac diagnosis. All oral
medications and supplements must be gluten free.
 Make certain that your GF status is noted on your
pharmacy file.
 Make certain that your pharmacist is well versed in CD
and Gluten Free requirements.
Take your lab results to these pharmacy visits.
*In some situations, you may need to work with a compounding
pharmacist to assure that no gluten containing ingredients are used in your
medications.
 Another consideration with prescription drugs is
dosage adjustment.
 As the gut heals and medications are better
absorbed, it may be necessary to adjust dosages
to maintain optimal intake of the active
ingredients.
 This is also important for any supplements you are
taking.
 Prescribing pharmacists may be able to make dosage
adjustments without a new prescription. They may also make
dosage adjustment recommendations to take to your physicians.
 A frequent question in the CD community is the
use of probiotics and enzyme supplements.
 According to Dr. Joseph Murray, probiotics can be
helpful in aiding gut healing.
 According to Dr. Peter Green, OTC enzyme
supplements provide no value in CD treatment.
However, prescription enzymes may be helpful to
treat pancreatic insufficiency which can be
associated with undiagnosed CD.
Cosmetics
and Body Care Products
 The scientific evidence says that if these products
contain any wheat, the amount of gluten is
minimal and poses no particular risk for gluten
ingestion. (except when considering lipsticks, lip balms)
 Remember that gluten cannot cross the skin
barrier.
(There is anecdotal evidence that some people are impacted
topically, but it is unclear if it is specifically about the gluten.)
 Some people are impacted by trace amounts of
gluten and experience symptoms from the small
amounts of gluten contained in shampoo,
conditioners, lotions, and potions that make their
way into their mouths.
 If you are impacted, change your products.
Family Screening
 Encourage your family members to be screened.
 8-15 % of first degree relatives will screen positive for CD. 5-8 % of
second degree relatives will screen positive.
 Reactions of family members to this information
will vary – some are willing to be tested, many are
resistant.
 Provide the information. Follow-up once. Then,
give it a rest. Let It Be...
 Focus on your own health and support those that
do choose to be tested.
 There are as many reasons for resistance as there are people
who resist.
Support Groups
 Nothing beats the wisdom of your peers who have
travelled this road to resource recipes, reliable
products, good vacation choices, best restaurants
in your area...
 Join a local CCA support group.
 Join the CCA Facebook page.
 Check out the CCA websites regularly.
 Use the resources offered today to stay current.
 As with all support groups, remember that the members are not
(usually) professionals; advice should be met with caution. They
are, however, experienced in living this disease and often have
practical wisdoms to share.
Self Learning
 Educate yourself about your disease and keep that
learning current.
There has never been a better time for new
information about Celiac Disease and Gluten Free Living.
 There is a huge interest in research. Research results
are rolling out almost daily about the new understandings related
to Celiac Disease and the associated conditions.
Why Don’t ‘My People’ Get IT
 Navigating Celiac Disease in your own life.
I have Celiac Disease
I need a Gluten Free Diet
 Gluten Free Living...With Family and Friends
 Further Adventures with the Gluten Free Lifestyle
Reasons for not ‘Getting’ IT
 There was confusion in understanding my GF food needs
because...
 Someone else does it differently (relative, friend, co-worker). Out of
habit. (default setting)
 Not paying attention to the details.
 Don't understand the importance.
 Does it really matter.
 Don't really care, not interested.
 What's the big deal. (Everybody’s GF these days...)
 ***It’s a lot of extra work.
 ***Not sure they know how or if they can do it.
Unless and until they have a lightbulb moment, attitudes are unlikely to change.
Focus on the people who do support you...
Family and Friends Who Support You
 Those who are willing to learn.
 Give them tools...the guidelines, pocket dictionary, recipe websites...
 Those who are experienced.
(This often includes others
 Those who think they know.
(They need some coaching.)
with CD.)
 Those who miss the little things.
(And sometimes it's
not about gluten.)
Focus on Safety
**Vigilance vs. Paranoia**
(Rational vs. Irrational)
Safety vs. Crippling Fear
Establishing Your Boundaries
My House, My Rules
The sign on my door says
My Home is Smoke Free,
Perfume Free, Scent Free, and Gluten Free
 When my children were at home I had a different set of rules
based on a mixed grain kitchen. That was then, this is now.
Your House, Your Rules
 What boundaries do you need in your home to be
safe?
 Gluten free kitchen vs. Mixed grain kitchen
 If it’s totally GF, does it impact anyone else? How?
 If it’s mixed grain, what’s allowed and who takes
care of what to keep you safe?
 Post your guidelines.
Vigilance vs. Paranoia
Check out some useful ideas for safe kitchen practices from
Cinde Little... The Everyday Gluten Free Gourmet
Gatherings with Family and Friends
 Their House, Their Rules
 What measures do you need to take to be safe.
Vigilance vs. Paranoia
 Negotiate with the Host/Hostess.
 Bring your own food.
 Ask to see the labels from the packages.
 Review the recipes.
 Ask the host to set out a separate plate of food for you.
 Bring favourite dishes to share. (always check with the host.)
 Eat before you go.

When your host is under the stress of preparing for a gathering that includes food, it
may not be the best time to be positioned about your rules.
Restaurant Dining
 It’s never been easier to be GF than it is now.
 It’s never been harder to be GF than it is now.
 Dr. Fasano did a web based survey in 2014 of 90 million people
eating GF.
 50 million did so to be healthier.
 24 million did so to lose weight.
 16 million did so to resolve health issues.
 Only 300,000 did so because of Celiac Disease.
 Is it surprising that we are now frequently required to provide
a medical diagnosis in order to have our GF needs taken
seriously in a restaurant?
 Gluten ‘friendly’ disclaimers are popping up everywhere.
Making it Work
in a Restaurant
 Plan ahead. Check the website, call the manager
to determine if the restaurant is a good choice.
 Choose off-peak hours to dine.
 Ask for the GF menu when you are being seated.
 Carry a GF dining card.
 Stress that it is medically required.(You don’t need to
disclose the nature of your disease unless you choose to.)
 It is possible to be discreet.
 Don’t make threats about your health.
(Compliance
by intimidation.)
 If it doesn’t feel comfortable (safe), speak with
your feet.
 Do assure them that good experiences will be
rewarded.
(Post on their website as example.)
 If an error does occur, let them know. (They can’t
fix it if they don’t know about it.)
 The staff are human and usually YOUNG.
comes from years of experience.)
(Wisdom
Children in the School System
 From ‘Our Values’ - Calgary Public School Board
 Students come first
 We believe that everyone can learn. Each student is
unique and worthwhile. We acknowledge, recognize and
celebrate the diversity of our learners. Success for
each and every student is the goal of our work.
 Our Community
 Public education is a shared responsibility. With our
students, families, employees, partners and
communities, we work together every day to build
positive learning and working environments because
when our students succeed, our communities benefit.
Together, we all make a difference.
 From our ‘Value Statement’ - Calgary Catholic
School Board
 All members of our community are sacred and must be treated with
dignity and respect. We value excellence in Catholic education,
guided by shared responsibility and the moral authority of the
Church.
 Parents
 We take pride in collaborating with our parents to ensure
their children have the opportunity to take full advantage of
the rewarding and fulfilling educational experience we offer
in our schools.
 Student Health
 Calgary and Area Regional collaborative Service
Delivery: takes an integrated, family-centered approach to
meeting the needs of children and youth. Professionals from
the fields of healthcare, human services and education will
work closely with you and your child to ensure that the best
services are provided for your child’s needs.
Making it Work in the School System
 Always start with the facts. (Diagnosis)
 Become familiar with the policies.
 Complete the allergy forms.
 Meet with the teachers, principle, school nurse,
lunch room supervisors.
 Focus on and stress the two most important
concerns:
 Keeping your child SAFE and
 PREVENTING further intestinal injury
 Provide reliable information that validates your
concerns
(logos are useful).
 Describe your child’s symptoms.
 Stress the need for urgent bathroom access.
 Stress the need for a sense of inclusion.
 Outline the specific types of situations that create
a concern... food in the classroom, craft supplies,
cooking classes, field trips, parent chaperones...
Vigilance vs. Paranoia
 Empower your children. Allow them to take
responsibility for voicing their own needs.
International Travel
 There are two governing regulations when taking
international flights.
 The security regulation is an international
mandate used to protect the public from security
risks. As example, it limits the size and quantity of containers of
liquids and gels you are boarding onto the plane.
 The customs regulations are determined by each
nation and limit the import of specific items
(including food) into that country.
Clearing Security - Leaving
 Liquids and gels must not exceed 100 ml per item
and 1 litre total.
 Security officers have some discretion in
classifying liquids and gels.
 Different countries may treat this regulation
differently.
Be flexible
 As long as food meets the terms of the regulation,
it can be taken on board the aircraft.
Clearing Customs –
Arriving
Canada and USA
 Both Canada and the USA have strict regulations
about foods being imported into these countries.
 The customs declaration forms for both countries
have a question asking if you are carrying food
with you.
 Don’t ignore this question.
 Many food products are allowed into Canada and
the USA with no concerns. Some foods are refused
entry.
Clearing Customs –
Arriving –
Other Countries
 Each country has it’s own import regulations for
food products.
 Check the import regulation for any country you
are visiting if you plan to carry food with you.
 Many foods are allowed entry with no concern.
Clearing Customs – before Departure
Arriving before Departing !!!!!!!!!
 When flying out of Calgary into a USA destination,
you are required to clear US customs before you
board the aircraft at the Calgary airport.
 In this situation, the import regulations come into
effect before you leave Calgary.
 Some foods will not be allowed to be boarded in
these circumstances.
____________________________________________________________________________________________________________________________
 These same foods may be allowed on other
international flights that do not connect through
the USA.
Making Travel Easier
 Carry a letter from your physician.
 If you are carrying food in your checked baggage,
put a copy of the letter with your food.
 Carry a list of all the food you are importing.
 Carry pictures of the food you are importing.
There
has been a huge and favourable change in the knowledge and understanding
of GF by customs agents in recent years.
 Have food delivered to your destination.
Eg.
Kinnikinnick, Amazon...
 If you travel frequently, consider a Nexus card.
Medical Cost Tax Benefit
 Incremental cost of gluten-free (GF) products,
an eligible medical expense.
 Persons who suffer from celiac disease (gluten
intolerance) are entitled to claim the
incremental costs associated with the purchase of
gluten-free (GF) products as a medical expense.
 What is the "incremental cost"?
 The incremental cost is the difference in the
cost of GF products compared to the cost of
similar non-GF products. It is calculated by
subtracting the cost of a non-GF product from the
cost of a GF product (see example below).
Supporting Your Claim
 What documents do I need to support a claim for
the medical expense tax credit?
 If you are filing your income tax and benefit return
electronically or on paper, do not send any
supporting documents. However, keep the following
documents in case we ask to see them at a later date:
 a letter from a medical practitioner confirming the
person suffers from celiac disease and requires GF
products as a result of that disease;
 a receipt to support the cost of each GF product or
intermediate product claimed; and
 a summary of each item purchased during the 12-month
period for which the expenses are being claimed (see
example below).
Eligible Items
 What items are eligible?
 Generally, the food items are limited to those
produced and marketed specifically for GF diets.
Such items include, but are not limited to,
GF bread, bagels, muffins, and cereals.
 Intermediate items will also be allowed where the
patient suffering from celiac disease uses the
items to make GF products for their exclusive
use. These include, but are not limited to, rice
flour and GF spices.
2014 Tax Benefit Thresholds
 The total of allowed medical expenses is reduced
by the lesser amount of $2171 or 3% of net
income. This becomes a non-refundable tax
credit.
 If net income is $20,000 the reduction of expenses
would be $600.
 If net income is $45000, the reduction of expenses
would be $1350.
 If net income is 75000, the reduction of expenses
would be $2250 $2171.
Why Do It ?????????
 This is a cumbersome method to enjoy a limited
tax benefit.
 Until there are changes to the medical expense
claims related to CD, it’s the best we've got.
 The CRA will NEVER recognize the need to
improve and streamline this method unless and
until they have to invest significant man-hours
reviewing our claims.
 Please do your part to keep it on their radar by
using this deduction whenever your numbers meet
the criteria.
 So, there you have it.
 So, You’ve Got a Diagnosis... Now What??
 Arm yourself with reliable information.
 Put one foot in front of the other.
 Enjoy the journey.
 There has never been a better time to be diagnosed
with Celiac Disease
 Thank you so much for being here.