Settling In with a Celiac Disease Diagnosis©

28 Mar 2015 Developed and Presented by JoAnne Murray

murray2@telusplanet.net

So, You’ve Got a Diagnosis...

Now What ??©

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: 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:

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, Copper

Electrolytes: Sodium, Potassium, Chloride

LFTs (Liver function tests)

Hormones: TSH (thyroid), PTH (parathyroid)

Fasting glucose

Homocysteine

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

months) until the numbers return to normal and periodically thereafter.

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) to get started on healthy gut healing.

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 403-943-2584 (formerly Living Well)

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

ulcers) as well as poorly managed periodontal disease prior to diagnosis.

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

with CD.)

Those who think they know. (They need some coaching.)

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. (Wisdom

comes from years of experience.)

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.