Just Diagnosed with Celiac Disease

Just Diagnosed Celiac_

You’ve Just Been Diagnosed with Celiac Disease

Both doctors that I was seeing, my primary care and my GI specialist, simply said, “Now, all you have to do is follow a Gluten Free Diet.”. My GI specialist took it a step further and said that I could even cheat sometimes if I wanted.  That it wouldn’t be that big of a deal.

If I had known then what I know now about Celiac Disease and the importance of following a strict gluten free diet, I would have probably gotten up from the chair I was seated in and walked out. Maybe even have flicked him the bird and said something really heated and clever.

But, I did not know how important it was to follow a strict gluten free diet. And negativity doesn’t do me, or anyone any good even if it feels good in the moment.

Months passed. My symptoms did not improve.  My cousin (who was diagnosed with Celiac Disease a month earlier) suggested I check out a book called “The Clean Gut” by Dr. Alejandro Junger, M.D..  This book was a huge eye opener for me.  It focused on how we need to find the root cause for disease not just slap a band-aid on the symptoms.  It also talked about the effect food has on our digestive systems.

For 3 weeks, I followed the Clean Gut program and felt so much better. My joint pain had significantly been reduced, my nose – which had been running for 4 years straight – stopped running, my stomach stopped bloating, my water retention was gone, my bowel habits were normal, and my sleep was deep and restful.

After the 3 weeks were up, I maintained some traits of the program. However, as the next few months went by, my symptoms began to return.  Despite the return of my symptoms, the program offered so much information and insight.  Bottom line, the types of foods I ate were going to directly help or hurt my healing process.

Find the Right Doctor

I needed a program that was more individualized to my unique needs and situation. I needed to find a doctor that understood Celiac Disease and my situation.  Dr. Junger suggests finding a Functional Medical Doctor.

“The Functional Medicine model is an individualized, patient-centered, science-based approach that empowers patients and practitioners to work together to address the underlying causes of disease and promote optimal wellness. It requires a detailed understanding of each patient’s genetic, biochemical, and lifestyle factors and leverages that data to direct personalized treatment plans that lead to improved patient outcomes.” (www.ifm.org)

It was on this website that I found the doctor that I see today. She has provided me with so much information and guidance.  I am still very much in the healing process, but I finally feel that things are moving in the right direction.

Get a Complete Look at the State of Your Gut and Overall Health

Sometimes, if you are lucky, eating a gluten free diet is enough for your gut to heal. But, for many, simply eating gluten free is not enough.

I provided my doctor with all of my bloodwork records and reports from my GI specialist, yet a lot more information was needed to get a better picture of what was going on with my gut because my symptoms were not improving from going gluten free. My doctor ordered more bloodwork (for a more comprehensive look at my overall health (besides just the gut)), a comprehensive stool analysis, a celiac antibody assessment, and a nutrient evaluation.

Individualized Game Plan

One trap to not fall into when trying to heal your gut is thinking that there is a one-size-fits-all solution. It is just not that easy.  Celiac Disease affects everyone differently.  That is why there are over 300 symptoms for Celiac Disease.  My situation is different from your situation.  However, there are basic principles and ideas to help you find your way to healing.

You we see it often in you quest for gut healing information – The Four R’s: Remove, Restore, Reinoculate, and Repair.  It’s a basic plan that summarizes how to heal your gut.  However, you will need to figure out your own individual needs based on testing.

Once my test results were in, a game plan was designed. The main focus was to decrease all sources of inflammation, supplement nutrient deficiencies, and implement a diet for healing my damaged gut.

Remove:

The goal of this step is to remove all sources of inflammation. Test for SIBO (66% of Celiac patients have this condition) and Candida infections.  All food sensitive foods were removed from my diet (not just gluten).  Common inflammatory foods besides gluten are diary, corn, eggs, soy, and sugar.  All products that came in contact with my body or skin must be gluten free.  That included anything from toothpaste, body wash, hair products, etc.

Restore:

Your gut is injured and cannot be expected to perform the same way a healthy gut could. It is going to need help in pulling the most nutrients from food as possible.  Some common aids for digestion are digestive enzymes, hydrochloric acid, and bile acids.  Again, your doctor will determine what your specific needs are based on your test results.

Reinoculate:

Take probiotics to restore beneficial bacteria. Make sure the brand of your probiotic is reputable.  Some doctors suggest 25-100 Billion units per day.  I am currently on a significantly higher dose based on my specific gut needs.

Repair:

Here is where you are going to want to take supplements to help provide the support your gut needs to repair its self. Common aids are L-Glutamine, Collagen, Omega 3 Fish Oils, Zinc, vitamin A, C, and E.  Again, your dosage and necessary supplements can be determined by your test results.

 

Healing Takes Time

Throughout this process you and your doctor will work together to find the best plan for healing your gut. You will likely need to retest your bloodwork as well as repeat other test kits to ensure that your gut and health are progressing towards healing.  It can take years.  Research has shown that even after 2 years, most celiac patients are not healed.  Other research shows that it can take up to 5 years or more to heal the damage.

It is a long process that I know full when can be incredibly frustrating. I am still in the healing process too.  My diet has been adjusted numerous times.  I wish that there was a quick fix, (and if there was I would have taken it by now), but there isn’t.

Just breathe and try to be patient. There will be times when you get angry and overwhelmed.  That’s okay and totally normal.  You will get there!  And on the way you may find many new foods, products, and recipes you prefer more than the ones that contain gluten.

Diagnosed CD_ game plan infograph

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