Ask Rebecca: How do I convince my family to get tested for celiac disease?

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This begins my new Monday segment of Ask Rebecca! I will pick one question per week from the Facebook page, messages and email and answer it to the best of my ability! Today’s question comes from Facebook – Judy Grover!!

“How do I convince my family to get tested for celiac disease?

Rebecca: I honestly don’t think there is any good answer for this. Just like anything else, your family has to be on board with thinking they have a problem and be willing to get tested. The testing is expensive and can be challenging to get an accurate diagnosis. If there are no obvious symptoms, the person is also less likely to spend the money on getting the testing done. My mom didn’t end up getting tested until I nagged her for months about asking her doctor. Then when she finally did ask the doctor, he gave her inaccurate information because he was not educated on the disease. He told her because she did not have diarrhea, she didn’t need to get tested. It wasn’t until after I gave her more detailed information about all the possible symptoms and encouraged her to get tested again that she finally completed the test. The doctor (whose results I believe are suspect) told her she did not test positive for celiac disease and she didn’t need to be concerned. Again, I don’t know what tests were run or if they were even checked correctly. So, that’s the only thing I can go on. What I would encourage you to do is the following:

  • Become as educated as you can be on the disease to explain the importance of getting tested. Without being able to explain the importance and why you think they need to be tested, it’s going to be a struggle to get them to do it.
  • Remember that not everyone has it in your family just because you do! We are quick to assume everyone has it or should get tested for it because we are diagnosed, when that’s not always the case.
  • Keep your family updated on your own medical journey. Don’t be overbearing about it or make constant digs because it’s likely to backfire.
  • Don’t forget that as adults, we have the right to get our own testing done. It’s our own health and bodies and we should do what we feel is right for ourselves and not anyone else. Haven’t you ever had someone tell you to get tested for this or that when you were struggling with your symptoms? Sometimes the shoe fit and you asked your doctor, but other times you felt you didn’t have the symptoms so it wasn’t worth getting tested. We should respect our family’s rights to do what they see fit with their bodies. We can’t control how or what they do! The only thing we can be sure of is that we are treating ourselves the way we believe is happy and healthy.

Did you successfully get your family to get tested? Please leave your story below!

 

Celiac and Fitness: Everything You Need to Know Podcast

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This week I address celiac disease and fitness with my podcast – On The Air with Pretty Little Celiac.

I talk about motivation tips, how to get started and discuss the importance of moving when suffering from a chronic auto-immune disease!

Don’t forget you can subscribe on iTunes so you never miss a podcast.

YOU are the only person in control of YOUR health!

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I recently heard a story about someone who felt she “owed” it to her family to eat normal for a meal during a celebration event and this made me incredibly sad.

Is it because our medicine is food that makes it so hard for people to follow a strict gluten-free diet? Is it because we associate food as something our bodies need and really can’t understand how consuming gluten with celiac disease impacts our health now and in the future? Is it because for some of us the negative effects aren’t immediate like anaphylaxis so we treat it with less seriousness?

If your family member had lung cancer, would you expect them to go to a cigar club with you for your birthday?

No?

Well, then why would we expect someone with celiac disease to indulge in a piece of cake for a birthday?

Our society and culture is so wrapped around food, making it difficult for us to eliminate gluten because we feel our social lives are taken from us or our ability to have fun with friends. The crazy thing about living gluten-free is that it only confines us if we give it permission to do so. Gluten-Free is challenging and so is staying safe, but I’ll preach it over and over and over that with careful planning, a successful gluten-free life can happen. I live a full, happy, busy gluten-free life because I spent the time learning where and what my body loves to eat. I know what to order at even the scariest restaurants but still keep my fingers crossed knowing I did the best I could with the situation at hand. And, very rarely have I had a problem. Usually it’s when I let my guard down that I get glutened.

It is entirely possible training for a fitness competition and dealing with the negative and rude comments from people about what I ate during those times prepped me for the ignorance of people I meet now while living gluten-free. But, in all honesty, I don’t really care what people say about my eating habits because I’ve NEVER. FELT. BETTER. That’s really all our friends and family should be concerned about when it comes to our health. The foods I consume are healthy and not slowly killing me so where’s the problem?

At some point, you need to accept that others opinions don’t really matter. As long as you are educated about your disease, following the guidelines and living a happy life – that’s what is important. For me, I’m not asking anyone else to live gluten-free. I don’t promote gluten-free for people who don’t need it and I don’t go on and on about my problems unless someone asks me. Don’t get me wrong, I love educating others about my disease and gluten-free living and I’m a huge big mouth advocate too! But I know what I can eat, where I can eat and how to order – which makes all the difference in the world when it comes to staying safe.

But I can tell you that I would never, ever risk my life to feel normal. And you shouldn’t either! I’m the only one that will suffer the consequences and frankly there aren’t any gluten filled foods worth being sick again. (A really hot soft pretzel is very tempting at times though, after all I am human!) Check out an older post of my about why cheating on celiac is a horrible idea.

Bottom line is this… You don’t OWE anyone, anything when it comes to YOUR health.

One of my favorite quotes is by Eleanor Roosevelt –

“No one can make you feel inferior without your consent.”

Celiac Awareness and The Buckeye Journal

The Buckeye Journal Cover
The Buckeye Journal Cover

I can honestly say this is the best week of my life.

I’ve dedicated the last 8 months to Pretty Little Celiac and Bexa Body Fitness and all of those accomplishments were showcased this week. First with the Columbus Business First Forty under 40 award and now with the COVER of The Buckeye Journal.

Is this real life?

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This magazine circulates to thousands of central Ohio residents who will read about celiac disease and hopefully this will bring awareness and education to all that take the time to read it! My vision for the article is that everyone who picks up a copy will understand the struggles we go through and maybe even could help someone get diagnosed. There are people I will reach and I won’t even know it but that’s okay because I know in my heart I helped. If you’ve been reading my blog for a while, or maybe you just stopped by today – you should know I’m a type-A, overachiever who loves helping other people. It makes my day when I get emails, messages, comments and more letting me know how much our stories are alike or that I helped you through a difficult time. You have no idea how much it personally affects me!

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I have the most amazing things planned  for Pretty Little Celiac until the end of 2013. I know we are ending celiac awareness month but it’s my goal to make every month dedicated to celiac awareness. My projects are going to help so many people, that I just can’t wait to get them done and share them with the world. I hope you can sense my excitement for this blog because I think I might jump out of my chair.

Thanks for reading – Stay tuned for what’s to come!

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Would you know if you had a vitamin deficiency?

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Would you know if you had a vitamin deficiency?

Is it preventing you from healing?

I will admit. I hate taking my vitamins. I’m not very good and remembering them and of course this weekend, I’m out-of-town and they are sitting on my kitchen cupboard at home. I’m deficient in several different things and need them to feel at my prime, so why can’t I get used to taking them?

While celiac disease can’t be cured with a pill or a prescription, the secondary symptoms caused by vitamin deficiencies can be helped by using supplements. I go regularly to have my blood checked and am actually due to go this week prior to my check up appointment next week with Dr. Auckerman. He is actually retiring and this will be my last appointment with him, which I’m pretty sad about.

Here’s what I will tell you and suggest. If you are diagnosed with any kind of auto-immune disease, I believe you should get your blood work done 1-2 times a year to make sure everything is running like a well oiled machine. It’s important to get accurate measures of your levels to know what dose of the supplements you should take that’s individualized for your body. There are some significant deficiencies that are caused by bowel disorders and by adding these supplements into your daily regimen, you can help your body heal.

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Let me tell you what vitamin’s I take 2x per day. I preface this comment by saying I am not recommending these for you, I am simply explaining what I’m taking and why. It’s important to visit your doctor to have your own levels tested and get the appropriate amounts for your body. I’m not a doctor, I’m just a celiac patient and blogger sharing my experiences with you.

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Magnesium – Some of the symptoms of magnesium deficiency include dizziness, muscle cramps, muscle weakness and fatigue. I’d say these symptoms are some of the #1 questions I get asked about with Pretty Little Celiac. I take Cal Mag-D and Magnesium Citrate 2x a day. One in the morning and one at night. Be careful with how much and what brand you are taking because they can cause you to have runny poo and very strange smelling bathroom experiences. If you think this could be a problem, ask your doctor to have your levels checked next time you are there! Are you looking for some natural ways to get magnesium into your body? Add lots of leafy green veggies into your diet. Almonds, cashews and soybeans are also natural carries of magnesium but I realize many of you can’t have these items.

Want some more reasons to take magnesium? How about that it helps to alleviate gastrointestinal distress? Or it can help you maintain your blood sugar levels? Or that it helps maintain and healthy heart and bones.

Read this fact sheet from the National Institute of Health on Magnesium!

Vitamin D – You can get vitamin D from fish, fish liver oils, egg yolk and in fortified diary and grain products. But what about when you can’t eat those things or are very limited? Most people in our country have a Vitamin D deficiency. I take 6,000 mg each day. Again the symptoms of Vitamin D relate to muscle weakness and bone pain. They can be subtle for most people but for those of us already struggling with bone and muscle problems, it can exaggerate the symptoms.

Vitamin B 12– This is one of the most important and over looked deficiencies, especially for those of us with auto-immune and bowel diseases. B12 deficiencies run rampant in people with diseases of the small intestine.  This is because we aren’t able to properly absorb it from our food. Some symptoms of B12 deficiency are being tired, pale skin, easy bruising or bleeding gums, stomach pains, diarrhea or constipation, mood changes, depression and tingling or numbness in fingers and toes. I always know when I’m not taking my vitamin’s consistently because I do suffer from the tingling in my fingers and toes. It feels like small pins and needles are poking away at my skin.

Cinnamon – This sneaky little guy could help you regulate your blood sugar, reduce LDL cholesterol levels and  reduce inflammation. My doctor said it also can help with hunger control as a side effect of assisting with blood sugar regulation. I take 2 pills int he morning and 2 at night. He recommends take them before meals. Many of you post about Candida and cinnamon assists with inhibiting the growth of this bacteria in your body.

DHEA Supplement – This was one of the tests I didn’t know anything about until the doctor did my tests. I was deficient in testosterone which can cause problems for me as a woman. Instead of trying to explain this complicated test and process, I suggest you read this article on Adrenal Health by Dr. Marcelle Pick. She explains it very well in this article. I know many of you suffer from mood swings, low sex drive, emotional distress and depression. This could be part of the problem. I would encourage all women who continue to struggle to get tested for this. I take 20mg/day. Read more about DHEA supplements at Serenity-Station.com.

Fish Oil & Omega 3’s – Did you know there are things called Omega-6’s? They are in all those packaged, processed gluten-free foods we consume to feel “normal.” They are also causing major inflammation in your body. Eliminating Omega 6’s from your diet, is a key component to healing our chronic disease. Omega 3’s are the superstars for our body. We need to focus on getting as many of this into our body as possible. They help with everything from asthma to cardiovascular diseases. You need DHA found in fish oil for your brain. It is one of the highest concentrated fatty acids in the brain and we need it to function.  Don’t your want your brain to be a well oiled machine? I take 6-8 of these bad boys a day. I need all the brain juice I can get.

Check out this article by Dr. Mercola on the problems with Omega-6. 

Just another reason to ditch those over processed, over priced gluten-free foods!

So, my advice for you is to get tested regularly for vitamin deficiencies to maximize your body’s ability to heal and fight off other problems that may occur. I can’t tell you what to take or how much to take, but I will tell you to go get tested! Any doctor can test for these and will know how to help you supplement for them. You don’t need to find a specialist unless your levels are way off and they refer you to a endocrinologist.

I’d love to hear your feedback! Tell me what vitamin’s do you take? Have they helped?

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Comments

  1.  Mindy says:

    Hello,

    Thanks so much for sharing! I have struggled with what to take for the 5 years since I became sick and diagnosed. The doctor had me on Vitamin B12 for the first year. I now only take a multi-vitamin a day which also has the Omega-3’s included. May be time for a change though since my energy level still has not picked up. The only time I have a burst of energy is after a good meal of protein. Otherwise I am sluggish.

    I am still a bit confused about how much Vitamin D to take. I recently heard that too much (over 2,000mg per day) is too much.

    I would like your feedback on this multi vitamin to see if you think it is a good product. I picked it because it is gluten free. I do have to get it by mail order. Here is what I take per day too.

    Pro-Biotiks brand (Gluten free Bio-35) http://www.pro-biotiks.com
    Jarrow Formulas – L-Glutamine 113 grams (heals stomach) this really worked after my biopsy
    Jarrow Formulas – Milk Thistle
    Sundown Naturals – Vitamin D3 2000 i.u

    I have also begun taking :
    Instaflex (for joint flexibility)

    Look forward to hearing your opinion.

    Thanks!
    Mindy

     

  2.  Laura says:

    Hi,
    Thanks for sharing this. The doctors (gastro, gyno, & general MD) that I go to never test my vitamin levels unless I specifically ask for them. I wonder if I should be seeing a Naturopathic type of doctor in addition to my regular docs to regularly test me for those.
    My recent tests showed that I am low in B12 & D, & was wondering how much B-12 you take per day and what form do you take it in? (sublingual or chewable tabs?) I’m also curious how deficient you are in vitamin D to be talking 6,000 IU per day? (I’m only taking 2,000 IU)
    Lastly, how many mg of the cinnamon do you take per day?
    Thanks!

     

  3.  Christina Nelson says:

    It was my “Very Low” Iron that finally had me take a hard look at gluten as an issue, even though I’ve not eaten red meat in 20 years. My doctor advised me to take Iron and B-12, even though my B-12 levels were “within normal range,” but they were in the lower third of that range. I’ve taken both sublingual and regular B-12 or B complex. If you have a severe absorption issue, sublingual can really help jump start you; I like the Trader Joe’s version with stevia.
    I had leftover Vitamin C and that helps iron absorption, so I added that and a general multi-vitamin that I’d taken intermittently for years. Since a lot of people are deficient and I avoid the sun, I added Vitamin D (also recommended for depression). I’d been thinking about Fish Oil Omega-3 for a while and finally added it after other recommendations for both depression and ADHD, as well as heart health. More recently I added Primrose Oil for PMS symptoms for the PMS week, and it seems to help my symptoms.
    I use a large Sunday- Saturday pill case and several smaller reusable pill cases so I have the vitamins with me. I have a hard time remembering also, especially since most need to be taken with food and I don’t always eat enough at a “meal” to take them (a yogurt or smoothie may not be enough). I also have a probiotic, but it’s in the refrigerator so I forget that even more often, but can at least add it to a smoothie. My previous probiotic didn’t require cold storage so I had it with my morning medications which is a more reliable routine.
    When I’m on top of my vitamins I feel so much better! I feel like I’ve finally gotten some energy and can be more productive. If I forget my vitamins all week, I feel more sluggish, unable to get up and grumpy. A good week is when I take them most days and a great week is everyday. I’ve experimented a bit too and am better WITH the B-complex in the mix. Everyone’s different! We have to find what works for us.
    Next appointment, I’ll ask for a vitamin panel; They rarely offer it. But especially with things like Iron and some fat-soluable vitamins or minerals, you CAN get too much! (I know Vitamin A and zinc are two.)

     

  4.  Orthomol best multi vitamin says:

    You have hit the mark, in it something is also to me it seems it is very good idea. completely with you I will agree. vitamin d12 Orthomol

Getting Started with Celiac Disease: Podcast

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On The Air with Pretty Little Celiac Getting Started with Celiac Disease

My newest podcast from this week is up and ready to go! I cover the basics of getting started with celiac disease. Basically all the things you need to know after you leave the doctor’s office.

Were you recently diagnosed with celiac disease? Are you struggling with what to do after you left the doctor’s office?

This podcast is for you.

I cover what to expect after your diagnosis including:

1. Emotions you will feel

2. Tips to get through everything

3. A get started guide on living gluten-free

4. Major changes in your life that need to happen for you to be successful

Please leave feedback! I’d love to hear it. 

Gluten Free Traveling Tips: Podcast

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Gluten Free Traveling Tips

Aaron and I go On the Air to talk about how we make our traveling trips successful! We give you our advice for what works and what hasn’t worked in the past along with great ideas and tips to stay as safe as possible during vacation.

We talk about research, planning, the best travel snacks and more!

Oh yeah, and we get our first live caller! How exciting! See what advice I have for her son who is struggling to find a camp that will accommodate his needs and for her daughter who is struggling with staying gluten-free after a celiac diagnosis!

We also have a little banter back and forth so you can get an idea of our relationship.

Want to wait until later to listen? Pretty Little Celiac is available on iTunes! You can subscribe to my page on iTunes and listen whenever you get the chance. I’ve had some amazing feedback on my podcast show, so please check them out. They have been really beneficial to a lot of people.

Have an idea for my next show? Email me

Enjoy!

 

Gluten Free Fast Food Options

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Gluten Free Fast Food Options

One of the biggest challenges I faced when eliminating gluten from my life was trying to find something I could quickly grab when I was out and about. Often, my day runs back to back and I’m not great of preparing and planning my day around food. So, I really struggled with making sure I had safe snacks with me consistently or ended up going to a dine in place just because I knew they would accommodate my gluten-free life! But that habit became too costly and I needed to get better about planning my meals.

But, sometimes you are in a jam and need something quick. Maybe you left your lunch at home or an out of the office meeting ran late, leaving you hungry with no time to get back to the office. What do you do? Where can you go?

When doing research on these companies, numerous other sites popped up offering information as well. I will tell you when doing research to go directly to the company as your best and most accurate information on safe choices for that restaurant. Every link I put on this site is directly from the website of the company and effective as of May 6, 2013.

Fast food disclaimer of mine: Please be aware the risk of cross contamination is high at any of these fast food joints. They are taught to do things quick because no one wants to wait for fast food. You can’t be sure they are handing your food safely or that proper precautions are being met to keep you safe. Any of these options are an eat at your own risk!

McDonald’s – I hardly ever eat here because it seems the only things safe are condiments. There is strong controversy over the french fries, its not very clear. They don’t make it very convenient to locate items with specific ingredients on their list of allergens either. It’s a gigantic list of every single food they offer with the ingredients listed. There is no chart and its extremely hard to read.

Wendy’s – This is my fast food stop whenever I’m caught unprepared or traveling. Their website has pages dedicated to the issue and they make it a point to let you know they understand and what options are available to us. This ONLINE GUIDE provides their options! My go to item is a baked potato with cheese. I could eat them every day. Wendy’s are all over the place so it makes it a perfect stop on our road trips!

Taco Bell– When I was first diagnosed, I couldn’t find anything to eat here. It seems with doing my research for this article, they improved their gluten-free selections and actually have some options. Check out Taco Bell’s offerings.

Burger King– Similar to their competitor McDonald’s, Burger King struggles to offer much for those of us eating gluten-free. Their burgers with no buns and condiments appear to be the minimal selections on their list of gluten-free menu items. As much as I’d love a packet of ketchup and a 2oz greasy burger, I think I’ll pass.

Kentucky Fried Chicken – “Yeah, can I get a tomato slice and a honey barbecue packet?” Or at least that’s what I’d order from KFC’s gluten free menu. I stopped eating KFC about 10 years ago when I watched a video of their employees horribly abusing the chickens but I’m pretty sure going gluten-free is another reason I won’t be visiting here anytime soon. Just another quick fix fast food chain offering up condiments and sides as their “gluten-free menu.”

Noodles & Company – I’ve had a mixed bag of success here. Sometimes it’s a great experience with no problems and other times I end up with regular noodles in my dish. They have done their homework and offer a great allergen and nutrition guide. I would love to see the same amount of enthusiasm go to training and educating their staff at the different locations! Be very clear when you go here and hopefully they will treat your food right.

Chipotle – Pretty much anything here is good except the flour tortillas. Check out their allergen and gluten free guide online.

Pei Wei – This chain is the little sister of PF Changs so it’s no wonder they know a thing or two about gluten-free. Their edamame needs to be requested gluten-free because they use chicken stock in making it regularly. I find this odd especially since this is a popular side dish for vegetarians and I’ve never seen it marked as being cooked in chicken. Check out their allergen and gluten free guide online.

Five Guys Burgers and Fries – I’ve heard wonderful things about them from other people but was sad by the information on their website. It isn’t very clear if they are gluten-free or not. It just says our buns contain… but nothing about the fries or meat being gluten-free. Several people told me they cook their fries separately and will make you a naked burger with no bun. If you know more than what they put on their website, or have a good experience, please post it below!

Sonic – How about a naked hotdog and a sundae? I’ve actually eaten that before here so don’t judge me…lol This is another one that’s tough to find some good options for gluten-free menu items. In desperate times, you can find something but I wouldn’t plan on actually eating here on purpose!

Carl Jr – They do have a low carb burger but gluten isn’t even listed on their allergen menu. They indicate which products contain wheat but not gluten. We don’t have them in Ohio so I can’t tell you what I’ve experienced. Have you been there? Let us know!

Del Taco – Avoid like the plague. Don’t believe me? Check out their menu which lists everything except soft drinks as containing gluten.

In N Out Burger – No allergy information listed on their website? Really? I find that extremely odd. But here is their menu of nutritional information.

El Pollo Loco – Just like anywhere else, eat here at your own risk. They don’t have a dedicated fryer but actually give a great disclaimer to say the risk of cross contamination is extremely high. They have a list of gluten/wheat free items on their site for those who are avoiding or can tolerate a small amount.

Chick-Fil-A – They have a few options for you! They specifically state it is a challenge to prevent cross contamination but they do have policies in place to reduce the risk. I wonder why the kids chicken nuggets are gluten free but the regular ones are not? How are they different? I’m going to have to check it out next time I’m over that way! Here is their list of nutrition and allergen information.

Coping with Celiac Disease: A Therapist’s Perspective (Podcast)

Coping with Celiac Disease: A Therapist’s Perspective

When I was first diagnosed with this disease, I didn’t understand it and struggled to figure it out. Some of you are there now and are looking for help or some of you think you have it figured out but maybe just need to hear something new. I invited Jummy Olawale on my show to talk about the most common struggles associated with celiac disease ( besides the food!).

I’m so glad I decided to do this. Her insight is poignant and dynamic. She really gives inspiration and hope along with tips and suggestions for dealing with this disease. She’s doesn’t have celiac and isn’t a specialist in the disease but really can provide some help for those of us needing help. If you feel out of control or like you lost your footing, this is the perfect place to start.

Here’s a little snippet of what we discuss on the show:

1. What are some coping skills to use when someone goes through a major life change like celiac disease? When everything in your life as you know it, changes in an instant? How do you handle the sense of feeling alone and like a hypochondriac because no one else understands the complexity or the seriousness of the disease?
2. What are some coping skills for handling all these emotions? Sometimes we can have other life issues going on and this is just a huge burden on top of the lemons life throws at us. Especially when you have a bad day and just want to go home, order a pizza and lay around all night.
3. What’s the best way to explain a disease like this to husbands, family, kids and friends? How do you get them on board with helping you instead of constantly minimizing the disease and asking you to just “try a bite because it won’t kill you.”
4. How do you handle the disappointment when family and friends (or your spouse) doesn’t sympathize and isn’t as supportive as you think they should?
5. Marital problems – Handling a non-supportive spouse – what do you do? When your spouse is the only one that understands, how do you find other outlets to cope instead of stressing them all the time.
6. Changing you mindset of food being pleasurable and instead of thinking about it as fuel. People get so upset that they have to eliminate all the things they love that are poisoning them. When they get poisoned, they beat themselves up and get mad at their bodies for betraying them.

On The Air with Pretty Little Celiac is also on iTunes! You can just search “Pretty Little Celiac” and subscribe to it and all the episodes will feed right into your player!

Want to know more about Jummy Olawale?

Jummy Olawale is a dynamic speaker, life coach, Licensed Professional Counselor, Pastoral Counselor and Licensed Chemical Dependency Counselor with extensive international and multicultural life experience and education.
Biography

Jummy was born in Nigeria, Western Africa where she lived and attended elementary and secondary school. She migrated to London, England where she completed her High school and college education. She earned her Bachelor of Arts (BA.) degree in Psychology and Natural Science from Canterbury Christ Church University College, Kent. After getting married, she migrated to the U.S. where she now lives with her husband and their two children. Jummy earned her Masters of Arts (MA.) degree in Counseling Ministries from Methodist Theological School in Ohio.

Jummy utilizes narrative therapy, cognitive behavior therapy and motivational interviewing approaches. She specializes in individual, couples, and marriage therapy, multicultural counseling, parenting support, career coaching and life coaching.