My Healing Journey~7 Years After a Positive Celiac Diagnosis
After 13 years of symptoms, I finally found a way to thrive with a positive diagnosis of this auto immune condition called celiac disease. Hopefully this sharing helps someone else recognize signs and symptoms and the positive impact changes and shifts to diet and routines can bring. If you or someone you know has ongoing digestive issues, unexplained skin rashes or sensitivities, joint pain or brain fog, perhaps this provides some insights…
When The Problems Began
It seems forever ago now, but 2003 was when my digestion shifted. All of my life (33 years old at that time) my digestion had been ‘normal’, now suddenly, seemingly overnight, that was no longer the case. Everything I ate seemed to caused digestive upset, which at the time translated just to loose bowels.
Fast forward to 2015 when I finally received the positive celiac and microscopic colitis diagnosis, my symptoms had expanded to include; painful, burning, bloated digestive tract; stomach always felt nauseous; extreme joint pain and a feeling of ‘looseness’ in the joints especially in my hands and hips; fatigue and unbelievable brain fog; weird rashes in strange places; diarrhea so many times a day that only 6 times in a day was a really good day; my normal 113 lb’s had reduced to just under 95 lbs; constant tooth issues with weak enamel; still, almost everything I ate made me feel awful, even tho I had been eating gluten free for the last several years.
What Brought Improvements?
Going truly gluten free. 110% constantly and consistently committed, as if my life depended on it. Because at that time, it truly did. In 2015, I was 45 and still at a time where everything bothered my digestion. Finally a visit with a Gastroenterologist ended with an order for a colonoscopy and endoscopy with a biopsy. The opportunity to improve my health was finally available to me.
Results confirmed a positive celiac diagnosis. I was coming out of the anesthesia from the procedure and I remember my Dr telling me the results, there was first a huge sense of relief that we found the issue: Celiac and Microscopic Colitis. Then as the days went on and the reality sunk in, the thought of it became overwhelming, stressful, anxiety ridden and incredibly daunting.
At this time, everything I ate felt awful because many of my gluten free items were not entirely gluten free. Many of them were processed in facilities which came in contact with or also processed wheat or gluten. I also had numerous food intolerances which caused continuous inflammation and damage along with the trace amounts of gluten. It leads to a symptom called ‘leaky gut’. (The end of the article has a link to ‘Time’ Magazines article on leaky gut which is extremely informative)
With celiac, level of tolerance to gluten contamination varies from person to person and our symptoms will vary widely as well. I have known celiacs who can eat a sandwich and be good one day and then a sandwich the next day triggers a flare. Some who get more constipated with exposure where for me, it instantly cleans things out, to an extreme. Others get more skin issues than joint pain, others who get more joint issues and no problems with their skin…it really becomes a learning journey to see what is truly going on for you, sometimes keeping a record of foods and symptoms can be extremely helpful in identifying triggers.
I also had tested for food intolerances to see what I was reacting to separately from gluten. At that time, I was highly reactive to things like soy, dairy, peanuts, potatoes, tomatoes, chocolate, eggplant, oranges and anything spicy. It meant eliminating all of these to allow my body time to heal and recover from the constant damage from the inflammation they caused.
Keeping a list of what I could eat was extremely helpful, otherwise I would wallow in the overwhelming world of all of the things I could not have any more. It made recipe planning at the beginning of the healing process easier knowing all of the things that were on the ‘safe’ list.
My mindset had to change as well: Either I could look at things from a place of ‘this is so unfair, why me’ or ‘I finally know what the problem has been, now I can finally make the changes to feel better!’ I had felt like a victim for long enough, it was time to empower myself with the possibility of improvement with change. I began to like change because it meant I began to feel better….. It was really important for me to embrace change because everything was about to turn upside down…
How The Changes Started
Recognizing that trace amounts of gluten could trigger problems, meant that a total clearing of anything with ANY sort of cross contamination needed to be removed from my diet and kitchen to know what was safe to eat. This is where things got overwhelming for me, it meant that everything that I ate, needed to be certified as gluten free or symptoms could potentially take me out for days to weeks.
Everything that I brought into the house should be gluten free so I wouldn’t have any cross contaminations. This meant that for a while, my family had to go gluten free too until I learned my triggers and we all learned how to keep things separate enough to keep me safe because gluten lurks everywhere….
Dust from gluten flour and gluten crumbs can trigger a flare…knowing this, helped to understand the level of sensitivity that I needed to approach things with. When cooking with gluten flour, the dust can remain in the air for up to 72 hours, for a celiac diagnosis, that dust can contaminate anything that is going to be consumed from that space. Crumbs from bread are enough to trigger a flare, so removing croutons from a salad will not provide a solution to allow a truly gluten free meal for many celiacs. Gluten does not cook out of items, it also does not ‘die off’ after time.
No flour with gluten is used in our kitchen, because of my sensitivity level. The only gluten we bring in the house is already cooked in something like breads or cookies. Those are kept on a side of the kitchen so I know not to prepare any of my foods in that area and when I wipe the counter down on this side, I use a sponge dedicated to gluten as sponges are another place where gluten lurks and can cause cross contamination.
Clearing the kitchen was a major milestone in moving forward, knowing that everything in the cupboards and refrigerator is safe to eat really helped to gain a handle on what I had available to cook with. In an afternoon, my Mother helped to gut the kitchen and put back only the things that were truly gluten free. As I mentioned, I had been eating gluten free for years but not to the point of confirming 0 cross contamination for the entire process from plant to processed product.
Checking labels constantly was the other thing that needed to happen before anything went into a recipe. It isn’t enough that a product is labeled gluten free, it also has to be produced in a facility that is free from wheat and gluten. If I was to eat oatmeal which was processed at a facility that ran wheat through the factory previously, those oats will be contaminated with gluten. That contamination would take me out now for several days to a couple weeks depending on my exposure level.
Facility fall out happens…just month before last, I discovered very much by random chance that my favorite gluten free flour mix ‘Pamelas’ had changed its facility and it now processed some items in a shared facility. The discovery of this caused my mind to temporarily explode as I had been feeling awful for weeks, unable to find the source of any contamination.
When I discovered this change to their label did in fact mean a higher risk of cross contamination, I stopped eating their products immediately. That next morning my symptoms started to improve but the continuous small amounts of exposure caused enough damage to make my recovery a challenge. Brain fog had started, bowel looseness had began, joint pain had set in and fatigue was overwhelming. Within a couple of weeks, the symptoms had resided and I was able to function as I had prior to that exposure.
My takeaway? Continue checking labels diligently to verify no change to facilities in my favorite items.
Sensitivity levels will vary for everyone with celiac, (as will symptoms) in order to find out how reactive I was, complete elimination had to happen so I could understand what was happening to my body when trace amounts were introduced to my diet. At that time, there were so many symptoms it was hard to tell what was food related and what was stress related.
Now, years later, I can tell which is which, and what exactly is triggering certain symptoms, so now I am able to differentiate between; flu like symptoms for a day that turns into longer lasting brain fog, digestive distress and joint pain from trace amounts of gluten; the rash I get under my nose is from corn, especially genetically modified; the burning in my gut and following joint pain is from eating tomatoes; excessive phlegm and mucous happens when I consume dairy and that can also cause digestive upset; stomach cramping, tightening, nausea and diarrhea symptoms all become compounded from stress…as just a few examples of how I sort out symptoms.
Changing out contaminated kitchen cookware was next as gluten contaminates anything porous: wooden/bamboo/plastic cutting boards and spoons; fine mesh colanders, cast iron pans; non stick pans; sponges; towels. As well as toasters, griddles and waffle irons;
Now I have pans dedicated for gluten and non gluten foods and sponges are marked which are ok for gluten containing dishes and those which are not.
Keeping a dedicated gluten free space in the kitchen that allows for safe food prep is essential. As I mentioned above, we keep ours in one side of the kitchen. That way I know not to use that side for any food prep where something may come in contact with some crumbs.
Other Gluten Places of Contamination
Restaurants-this is a tricky place to navigate for those with greater sensitivity to cross contamination. Do sauces contain gluten, do any ingredients to the sauces, spices or other ingredients come in contact with gluten in facilities before they get to the restaurant? If there are numerous symptoms and sensitivities, might be best to avoid restaurants until you know which ones are truly safe.
Call ahead, before you go, ask the questions that matter to you about prep during a time which isn’t peak hours for restaurants. Best not to pressure people with questions in a hurried fashion, it could skew your answers to the point of possible contamination.
What I would ask: Do you have a dedicated space and cooking pans and utensils specifically for gluten free items? Does someone verify that items coming in already made or processed are free of facility cross contamination? Have you had celiacs complain of gluten exposure? (Especially if a restaurant claims to be ‘celiac safe’)
Just because they are listed as gluten free friendly, or have a few gluten free items does not make them safe for celiacs. For example, a bakeshop that makes traditional wheat/gluten flour patties will have immense amounts of gluten particles in the air and on its cooking surfaces. This amount of cross contamination would be enough to take me out for a month if I ate a ‘gluten free’ item from their menu.
Unless they have a dedicated space, ingredients, cooking surfaces and utensils, could be best to avoid them. If giving a place a try is worth it, I make sure to do it at a time when I don’t have major commitments the following couple of days just in case I get ‘glutened’.
Meat Counter at the grocery store could be ok to shop at. Depending on your level of sensitivity consider that most meat departments use spices to season meats. Most meat counters that I visited in my area confirmed that the spices are NOT free of gluten, therefore, depending on their practices, potential for cross contamination is possible. If you don’t feel well after eating meat from the meat counter, consider this potential place of contamination.
Everything that comes in contact with your mouth should be evaluated for potential gluten contamination, especially if you are extremely sensitive to gluten or have a multitude of symptoms after cleaning out the gluten from your diet.
Lip Balm/Lipstick
Facial cleanser/moisturizer/serums/exfoliants
Shampoo/Conditioner
Toothbrush/toothpaste/floss/mouthwash (see link at the end of this article for dental recommendations as mentioned just below in the dental visit section)
Dental Visits-confirm with your Dentist that everything that they use on you is gluten free-challenging for some offices to understand that gluten comes by other names not typically known to most of us. The end of this article has a link to Beyond Celiac’s website sharing products that are known to be gluten free to share with your dentist if they aren’t familiar with gluten ingredients.
Closeness to loved ones should be monitored…what I mean specifically is kisses, make sure that the kisses you receive to your lips are gluten free as well.
Find support!!! This adjustment is challenging, having support from just one other person can make a huge difference when facing all of the daunting changes needed. There are many celiac awareness websites, some that I have looked to are listed below with links as well.
For me, fortunately my Mother was able to help, completely and totally supportive for the entire process. From clearing out the kitchen of contaminated foods and kitchen ware to finding new flavor filled recipes for our family. At this time, my energy level was extremely low and experimenting with new recipes wasn’t something that I had time or energy for.
‘Breaking The Vicious Cycle’ by Elaine Gottschall was a book that provided a huge amount of help for simplifying an anti inflammatory diet to start my healing process. I started with a basic broth with chicken and carrots then expanded my pallet one item at a time. I excluded tomato and eggplant from the recipes and found a great amount of relief after following her protocols with for several months.
Continuously Learning & Adapting
As I continue to heal from celiac and microscopic colitis, I have learned to continuously listen to my body to try to learn what it is trying to tell me. The food/mood/symptom log has been helpful especially at times when I am consistently not feeling well. It is always a helpful tool to figure out what might be going on or what could be triggering a particular symptom.
As I learned from my exposure to one of my long term favorite products, there is no opportunity to trust without looking at a label. Corporations are out for money, not for helping you recognize a change to their processing. In a time where companies are having to cut corners at every chance, it is crucial to continue to remain diligent and take the time to confirm that each item is in fact gluten free.
Internal Inflammatory Triggers
Not everyone reacts to foods, but for those who are impacted by what they eat, foods can contribute to tissue breakdown that can contribute to an increase in uncomfortably symptoms from celiac disease. By the time I was diagnosed, I had numerous food sensitivities as I mentioned above. In order to be able to allow my body to heal, it meant not only avoiding anything with gluten, it meant avoiding the foods that I tested highly reactive to. Any time I would consume any of them, I would immediately notice a decline in health with some random symptom.
I began to thrive when I avoided not only items coming in contact with gluten but when I avoided ALL foods that caused an issue for me. (Soy, dairy, eggplant, tomato, potato, peppers, corn, peanut, chocolate and orange). I found these out by doing testing with my doctors to determine what specifically should be avoided, most all of these I avoid now because I have found that for me specifically, they cause symptoms almost immediately after eating them. Many people are able to eat those reactive foods again after avoiding them for a while and find they don’t have issue when they consume them again.
Regular testing is hugely important to verify what is and isn’t working for you at this particular time. Our body changes, by avoiding particular nutrients for the longer term, you do put yourself at potential risk of forms of nutrient depletion. I cannot emphasize enough the importance of regular testing, especially for food intolerances if you find that is an ongoing issue for you.
Biggest inflammatory potential comes from things like soy, gluten, corn, peanuts, dairy and nightshades: potatoes; tomatoes; eggplant; peppers. Anyone can have food reactions to any food so if you have consistent rashes, redness, irritation or feel like you are aging faster than you should, it would be best to connect with a practitioner who can help you test for foods which may be an issue specifically for you.
Often those are temporary reactive triggers, as I mentioned, the body heals, they may not always be a problem. Gmo’s (genetically modified organisms) and foods grown in pesticides should be avoided whenever possible as they create more work for the body to process and can leach toxins into the body.
Supplements Essential To My Healing
After years working with numerous practitioners, it was Naturopathic Doctors, Acupuncturists and Ayurvedic Practitioners who provided the most support for my healing journey and physical recovery. There are several supplements that they have recommended that I have come to rely on daily and especially during flares to speed up the recovery process and support health overall. I have found that avoiding any of these for extended periods, especially when including more inflammatory foods or alcohol in my diet, I notice increased severity in symptoms overall. Below are some of the supplements that I cannot go too long without before noticing and assault in symptoms.
Everything here is shared as to what has personally worked for me to help provide relief and feel better. All of it should be taken under the advisement of your own health care professional to determine necessity and proper dosage, as well as any contraindications specific to you. They should also all be organic or free of toxic chemicals like pesticides and free of genetically modified organisms. Please see the information at the end of this article if you need help finding a practitioner who is familiar with the benefits of supplementation.
Collagen has been something that I found really helps to soothe the intestines, especially when I wake at 3-5am with a digestive flare. I include it daily, ideally from an organic, non GMO source, from food like bone broths. (We start to lose collagen in our early 30’s and things like pollution, tobacco, and sugar can further deplete our stores). Not only has it helped my digestion, it has improved the sag that was happening above my eyelids and tightened up my skin tone overall. You can find it in supplemental form, but food sources are always best.
Omegas have been essential to the recovery and healing journey. Without them, the burning digestion flares, the dryness in my skin everywhere worsens to the point of cracking and the joint pain worsens by the day regardless of my diet. Omegas are super anti inflammatory which helps to combat destructive inflammatory activity happening in the body from sugar, environment and other triggers. If you don’t like using omegas from fish, incorporating Borage, Flax and Chia could be something to ask your Dr about.
Iron is something that I use regularly (with testing several times a year) to verify iron stores as I have usually run anemic. It always got worse during menses but now in peri menopause I continue to use it often as there seems to be a continuous lack of iron still that my doctors are working on finding. For males, best to test levels regularly as too much iron in the system can cause problems.
Zinc is a highly restorative mineral for skin and tissue, I use it regularly to help provide healing benefit to my digestion and body overall.
Vitamin C is taken daily for immune health but also for absorption of iron. It is also important for connective tissue and so many other aspects of skin and overall health. Food sources are always best and your Dr can help determine best supplemental sources and dosing.
L-Glutamine powder continues to be a healing and restoring amino acid that I use daily, sometimes alone mixed in water, usually in a blend called Perma Clear by Thorne where it has other soothing and healing ingredients.
Ginger is very soothing for me, some mornings start with a hot water with about a tablespoon of ginger grated in as well as a small spoon of honey to calm and soothe my digestion. This is especially helpful in the colder months to get a warm and comforting start to the day or end to the night.
Tumeric is something that I will use either in foods or in a ‘golden milk’ drink or by itself in supplement form to help provide soothing, anti inflammatory relief when symptoms are flaring.
Multi Vitamin is essential to maintaining the nutrients regularly as there is so much depletion happening whenever there is loose bowels. For me, if I miss taking it in the morning, the day is much harder to find the energy to keep going, especially in the early afternoon.
B 12 sublingual is something that I fall back to often when I need a little energy boost without the caffeine. Sometimes I use it after lunch as that’s when I can get the sleepies after eating.
Chlorella helps to soothe my system when I have intestinal fires happening or when I feel like my body has been running especially acidic. I add a teaspoon or two to water to drink it, family says it tastes like pond water but it feels soothing and grounding for my system.
Flax seeds ground and added to my smoothies or sometimes added to plain water if my system is running loose and I need a little soft bulking agent.
Chia seeds have become a new favorite, especially in my water. I love them as a pudding, but lately I really love them in my water, they feel like they add the soothing, soft bulking fiber that I need. They also feel like they help tide me over between meals as they have a tiny bit of protein to them as well.
Stress Changes Everything
Keep in mind that stress impacts every aspect of healing. It will increase the severity of symptoms, it will contribute to the degradation of health if you have auto immune conditions. Try to do whatever you are able to in order to reduce the amount of stress you experience daily.
For me, time surrounded by Nature helps to soothe me, music can help release stress, as can breath work and sometimes meditation, especially with the right guide.
Where Things Are For Me Now
At the time of my diagnosis 7 years ago, I thought I would never make it through the changes necessary to thrive~but it happened. Slowly, one step at a time, I found a place of balance, but it definitely takes work to maintain. It has been possible for me because of the support I have received from my Mother, my Son and my Husband, from their patience, love and financial backing, I am able to live a more healthy lifestyle, prioritizing my health over a job outside of our home to provide for more income.
Everything that I eat is cooked at home, there are only two restaurants that I feel comfortable eating at so that has changed the family dynamic of eating out together. Grocery store trips can be lengthy if I am searching for a new product as it takes time to verify the labels on many packages. I have learned how to be a better cook, utilizing savory and flavorful spices in new recipes often modified to eliminate any inflammatory foods which I know I react to.
Alcohol was a huge no no until about a year ago, my system was too compromised to tolerate a drink, now I can have a little bit of vodka with some juice, too much and I will suffer the next day but a little with food seems to set ok for now.
Dermatitis Herpetiformis is an ongoing issue, it is little blistery (non contagious) bumpy rashes that happen on my elbows, knees and up the middle of my backside in the most uncomfortable of places. Cutting out many of the reactive foods made a huge difference for me and removing gluten in all of it’s hiding places definitely helped after several months. However it still pops up randomly, sometimes just a little bump or two, sometimes a full patch of itching and burning irritation.
If anyone else has insight to help with this pesky little rash, I would love to know your tips. Chamomile balms seem to soothe as do nourishing oils but I am always open to learning more good soothers!!! Please feel free to comment or email me directly, I would definitely welcome a conversation to learn more about what you have found that helps!!!
Each day is a lesson in patience and perseverance as I strive to feel better that day than I did the day before. It doesn’t always work, but in the process I am learning to listen to what my body is telling me and trying to take the time to honor the requests that I hear from it.
Thank you for taking the time to read my share, I hope it provides some insight to you or someone you love with a celiac diagnosis.
If you experience skin issues with a celiac diagnosis, please consider scheduling a complementary Discovery Call or a Consultation with Tanya at https://holisticskincaretherapy.com/services/.
*All information provided for dietary, herbal or supplemental consideration should be taken by advisement under the care of your MD, Naturopathic Doctor, Herbalist, Nutritionist, Ayurvedic Practitioner or other qualified health care practitioner you are working with as these may need direction specific to your health care needs. If you would like to find a professional to help support your concerns separately from your MD, who may not be familiar with many of these, please let me know, I have several options to find someone right for you.
Leaky Gut Explained Article from ‘Time’
Beyond Celiac to learn important basics around Celiac Disease with a great deal of important info.
Beyond Celiac article on Dental Care with Celiac Disease
Celiac.org is another site full of information about where gluten lurks, symptoms, current research and much more celiac relevant information.
Mayo Clinic for more information about symptoms and the condition overall
