Journey of a lifetime

[janeen McConniel]

In one’s journey, there are many phases, experiences, connections, voyages, events, happenings, longings, dreams, revelations, unexpected turns, and everyday life.

My journey has been filled to the brim with these and more. My Dream - to receive certification as a culinary nutrition expert and continue serving and encouraging others in their journey to wellness.

I have lived a blessed life. Among the most incredible blessings have been:

•   A tremendously large and deeply loving extended family.
•   Marrying a husband who could not love me more, standing by me for 47 years.
•   Children Who Love Home and exhibit “Home is Where Mom and Dad Are.”
•   A home and church life that taught values, standards, and the meaning of love, friendship, and loyalty to God, Family, Country, State, and self.
•   Wonderful lifelong friends spanning the globe.
•   A vocation steeped in a life of serving others.
•   Passions that have been allowed to flourish.
•   The opportunity to see firsthand where God’s miraculous theater of the New Testament unfolded and followed the footsteps of the Apostle Paul.
•   Seeing our children follow their Christian upbringing into adulthood.
•  Finding Dr. Christine O’Brien, who guided me toward wellness. (Functional Medicine Doctor and more)
•   The opportunity to navigate the Academy of Culinary Nutrition Expert Certification Program.

These and many, many more are only but a speck in the journey of my lifetime.

My unexpected turn - the diagnosis of Celiac Disease. While this was not a devastating diagnosis, it was undoubtedly one, at first, that seemed unnavigable. But my upbringing of standards, values, loyalty, and a “Can Do” attitude, and the fact that the 15-year journey to health finally birthed an answer, I was highly motivated to abide by the plan that eventually would heal my body.

5 years later, unexpectedly, an additional 25 food items were restricted. Still committed and with excellent guidance from Doctor O’Brien, the journey continued.

Home | Complete Health & Wellness | Lewisville, TX (dfwwellnesscenter.com)

Making any significant dietary change is hard. One must look at the big picture. Our initial thoughts: “How can I cook for myself and the rest of the family?”  What about attending multiple meetings and traveling frequently? One can only suffer being told, “You can eat salad,” so many times.

We must remember that it is our journey. If we want the journey to be smooth, we must plan ahead, pack the right items, including emergency items, and alert our hosts of any needs. In doing so, above all we must be patient; it takes time for others to understand and remember our parameters.

Although Gluten-Free was easy for me, I realized that everyone did not know what that meant.

Most family and co-workers were sensitive to plan for me initially. But as time went on, sometimes it was easier to ensure there was salad.

Restaurants were so afraid; they would only cook my food with salt and pepper.

The things that helped me enjoy this journey were:

1.     Researching to fully understand for myself what I could and couldn’t eat.

2.     Carrying Garlic Salt, Cholula, and Ghee in my purse for serendipitous eating out.

3.     Parties – I took gluten-free crackers for dips/cheese trays or a dish/dessert or planned to eat before or after the party.

4.     Restaurants- look at the menu online, call ahead or arrive early, and speak to the chef.

These steps helped reduce my stress and others who did care, but didn’t know how to accommodate me.

This journey could be rough, and we could cave into excuses, but if given the chance, take time to understand, be prepared, and above all - Enjoy All the Blessings, including the wonderful world of beautiful foods that await us.

[Scott Adams]

Thank you for the tips, and for sharing your story!

How long have you been on a gluten-free diet? You mentioned 25 other items you had to restrict from your diet, that sounds very difficult. Do you still have to restrict so many things?

[janeen McConniel]

Scott, I was diagnosed on July 10, 2012, and have been strictly Gluten-free since July 11, 2012. I met Dr. Obrien at the Gluten Free event in Dallas the next year as well as a man, most likely a functional doctor from another Wellness facility, who said to me as he handed me his card, " When you get tired of going to doctors and not getting better, call me". I started looking for that card after 2 years but didn't find it until 4 years later. I found Dr. O'Brien's card instead. She ran bloodwork to test for food sensitivities and it came back with the other 25 foods! I went home determined yet bewildered.  I had forced myself to begin eating breakfast, which I had not done for years. And now - No pork, dairy, eggs... this is when I realized it is okay to eat guacamole on sliced summer squash for breakfast!

So, to add to "No Gluten," I went on a leaky gut protocol, plus strictly avoiding the 25 other "autoimmune sensitive, responsive" foods for 90 days.  This began the week before Thanksgiving by the way. I lost 40 lbs. during that 90 days and was scared to continue, so I backed off the calorie count another nutritionist had told me I needed to be on and just ate the foods I should, and everything evened out. Many of those sensitivities subsided, but the main items for me now are Dairy, Gluten, and Soy. Soy is the worst of them all. 

What started the 15-year journey in 1997 was going on a diet that said, "Eat wheat."  For 3 months before the 1997 event, I ate bread and other Wheat items that were not in my usual diet. I never really ate bread, even on hamburgers and hotdogs. I gained 15 lbs. WHILE on a diet, I was extremely weak, and I saw several specialists who had lunch to discuss my case. I think they gave me naproxen. But other than that, I just got better on my own, and I attribute that to having had a sports massage and returning to my pre-diet eating habits. 

Once diagnosed with Celiac, I could look back on my past and recognize that this was a condition that reached back my whole life. As a child, I thought I did not like milk until one day, I had it and recognized it made me nauseous. But now, I recognize, I cannot have it. Casein is my issue. 

Sorry, that was a long answer.  I am one of those who try to get all the info out in the first place or solve the problem before it happens. HA! 

I am conducting my first Culinary Nutrition Workshop (last assignment for Certification) tomorrow, so if you or anyone else responds, I will check back in on Sunday or Monday. This post was also an assignment for which I am grateful. I have known about Celiac.com and have engaged the information on the website since that Gluten Free Exhibition in 2013, but I have never explored the community I see here. I am thankful for the gentle push in this direction and am looking forward to engaging in, participating in, and giving to this community of like-minded people.

 

blessings and have a super weekend.

[Elizabeth M Blair]

are these food sensitivities you mention continuing? I had read here at it was advisable to not consume milk for at least a year after one starts a gluten-free diet (for me in July 23).  But I am so thin that my GI nutritionist suggested that I drink whole milk without lactose, as well as cottage cheese without lactose to gain weight.  I have finally gained a few pounds but not many.  But I continue to have GI issues, gas and bloating, but no constipation.  Since you are studying this now, I am wondering if the best way to determine negative reaction to other foods is the notebook strategy,  writing down what you eat each week and noting how you feel?  Has that been recommended in your studies?  I would like to avoid expensive tests if possible.   

[janeen McConniel]

Elizabeth, many people with Celiac also have dairy and soy issues. My Dairy issue is not lactose but Casein, the other protein in dairy. The way my husband and I figured out I had celiac was by researching the constant gas issues I was having. The interesting thing is that the issue was actually dairy. Anytime I would have dairy after going Gluten-Free, I would still have uncontrollable gas. 

If your issue Is casein, consuming lactose-free products won't help you. Many people who have Celiac who go gluten-free still have issues as a result of Soy. And if you think gluten is in everything, try going without soy! I think it trumps Gluten in the “ It’s in everything “ category. 

 

Because Almonds and Coconut were on my additional foods causing an immune reaction, my only milk choice was Flax milk. I now use coconut and Almond milk. I also just learned how to make nut milk! 

Over many years It has been suggested to me by different doctors to use a diary for various issues. Because we can’t remember every instance surrounding our consumption, actions etc. surrounding whatever issue we are trying to solve, a diary is an excellent tool. For me using a chart where I could list foods across the top with the first column for Date then check boxes for reactions / or Not  was easier.  

Doctors who practice Functional medicine are the most knowledgable when it comes to complex nutritional, deficiency issues. They specialize in “connecting the dots” that specialists miss because their specialty causes them to focus on specific areas, systems of the body. 

My doctor took 20 years of medical records, labs etc. And traced down issues that kept showing up in blood work, but not 1 doctor ever addressed it. By looking at my labs, she told me there Was something going on with my liver and had been for years. She was right! I have fatty liver! 

I hope this was helpful and you will be able to discover the source of your issue.

[plumbago]

3 hours ago, janeen McConniel said:

She was right! I have fatty liver! 

My goodness, that is quite an oversight! How did that happen? BTW, many with celiac often have elevated enzymes. Did your's normalize once you were on a gluten-free diet?

[janeen McConniel]

3 hours ago, plumbago said:

My goodness, that is quite an oversight! How did that happen? BTW, many with celiac often have elevated enzymes. Did your's normalize once you were on a gluten-free diet?

Yes it did, because the liver labs improved, due to adjusted diet. That was 2017. I went to a specalist last year as a result of labs to have a liver scan and sonogram. Fortunately, although my score was 60% fat, I had  NO scarring. I am working on reversing it by diet, which I did in 2017. Now I know what blood tests to follow to make sure it stays in check. 

How it happened :

From dealing with my husbands health issues over the last few years and reviewing his labs and questioning doctors I have been told every time: “well when you are sick, your labs will be off”. Often they only pay attention to what they are looking for. I have had to tell them to check him for dehydration and each time he was. 

He was also misdiagnosed with Parkinsons in 2018 and I kept saying he does not have Parkinsobs, or he does but he has something else as well. He was finally correctly diagnosed 4 months ago with a very rare disease that is often misdiagnosed as Parkinson's': MSA-P (Multiple System Atrophy - Parkinsonian). 

 

My point and encouragement is that diagnosis is often a syatem of elimination and we can help the process by learning to understand our lab work, I highly suggest having a functional medicine doctor in your care team. I always look up any flagged labs and keep a log of flagged lab work for discussion with the doctors.

 

 

 

 

[plumbago]

@janeen McConniel Securing appointments with FM doctors would be ideal, if only insurance covered them, and/or we all could afford it!

[janeen McConniel]

My Functional Medicine doctor is also a chiropractor and her office visits as well as her posture therapist ( physical therapy) visits were covered by my insurance. I did have to pay upfront and then submit my claim. Now that I am retired and on Medicare, I can’t process the claims anymore as she isn't registered as a Medicare provider. She did tell me that some MD’s are also FM doctors. 

[Elizabeth M Blair]

What, exactly is a FM doctor?  Could someone explain?

[janeen McConniel]

this is the best definition I have seen and how I understand it.

 

Functional medicine is an approach to healthcare that focuses on treating the root causes of illness, rather than just managing symptoms. It considers the interconnectedness of various bodily systems and how they affect health. Functional medicine practitioners often use a holistic, patient-centered approach, looking at factors such as lifestyle, genetics, and environment. The goal is to address the underlying imbalances and promote overall well-being rather than just alleviating specific ailments.

I found it here: General Health: Ask Health Professionals (msn.com)

Many of them practice functional medicine because they have been through the same long journey to discover their illness like us. most are connected to a "Wellness Center". however, some wellness centers are more business-minded. 

 

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Elizabeth M Blair]

2 hours ago, janeen McConniel said:

this is the best definition I have seen and how I understand it.

 

Functional medicine is an approach to healthcare that focuses on treating the root causes of illness, rather than just managing symptoms. It considers the interconnectedness of various bodily systems and how they affect health. Functional medicine practitioners often use a holistic, patient-centered approach, looking at factors such as lifestyle, genetics, and environment. The goal is to address the underlying imbalances and promote overall well-being rather than just alleviating specific ailments.

I found it here: General Health: Ask Health Professionals (msn.com)

Many of them practice functional medicine because they have been through the same long journey to discover their illness like us. most are connected to a "Wellness Center". however, some wellness centers are more business-minded. 

 

Thank you for this definition, Janeen.  It sounds like a wonderful field. I am going to check with my health insurance plan to see if this is covered. 

[Elizabeth M Blair]

3 hours ago, Scott Adams said:

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

Scott, I am on month 7 of a gluten-free diet and these is all so intimidating.  I want to try the elimination diet - one item at a time.  My next question is this.

Let's say I eliminate all cheese - for how long would this be necessary to see whether the symptoms I am having might be caused by cheese - one week? two? a month?

Thank you so much for responding with such helpful but complex information. 

And what kind of a practitioner would I go to to have food allergy testing done?

[Scott Adams]

I recall doing two weeks off of a food, for example soy, corn or casein/dairy, and then adding it back and recording how it goes with regard to any symptoms. Sometimes I had to do this more than once with a food group to be sure.

As far as food sensitivity testing goes, the problem might be that a lot of sensitivities might be uncovered by testing, yet doing this exclusion diet may not correlate directly with a food that the test indicates you have issues with.

Here is my experience with food sensitivity testing:

 

[janeen McConniel]

22 hours ago, Scott Adams said:

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

Thank you Scott.

I am 11 years since diagnosis and going ultimately gluten-free. I will look this over possibly tomorrow. What I do know is that Soy .

[janeen McConniel]

Soy will be my forever enemy.  My reactions to Soy are immediate and worse than any gluten reaction  I had before, when it comes to going to the bathroom. Dairy is interesting. I can eat Bluebell ice cream with no effects. But other brands cause the gas and bloating. I feel I can eat white cheese with no problem but not cheddar cheese. Casein is my issue, not lactose. Any thoughts on that?

[Elizabeth M Blair]

18 hours ago, Scott Adams said:

I recall doing two weeks off of a food, for example soy, corn or casein/dairy, and then adding it back and recording how it goes with regard to any symptoms. Sometimes I had to do this more than once with a food group to be sure.

As far as food sensitivity testing goes, the problem might be that a lot of sensitivities might be uncovered by testing, yet doing this exclusion diet may not correlate directly with a food that the test indicates you have issues with.

Here is my experience with food sensitivity testing:

Thank you Scott.  What a journey you have had.  I'm  feeling grateful that I did not discover I had Celiac until now (at 75 years of age) and I was able to enjoy all foods without worrying about it.  The symptoms I have now are just as bad, so pretty sure it's not just gluten I react to.  I will check with my GI nutritionist about what kind of test I could take to learn more and how much it might cost and if it would be covered by insurance.  So glad to have the learned experience of folks on Celiac.com to consult. 

[Elizabeth M Blair]

14 minutes ago, janeen McConniel said:

Soy will be my forever enemy.  My reactions to Soy are immediate and worse than any gluten reaction  I had before, when it comes to going to the bathroom. Dairy is interesting. I can eat Bluebell ice cream with no effects. But other brands cause the gas and bloating. I feel I can eat white cheese with no problem but not cheddar cheese. Casein is my issue, not lactose. Any thoughts on that?

Thanks for your thoughts, Janeen.  A Newby, all I can do is hope my own path become more clear as the year goes on -- with a little from my Celiac.com friends. 

[janeen McConniel]

Elizabeth, sorry but I accidentally posted a reply to Scott on your post. I wondered why it disappeared. 😂 he posted the same post to both of us. 

[Elizabeth M Blair]

No worries, Janeen.