I have always been blessed to have what I call “a stomach of steel,” just like my dad! My sister has suffered regularly with stomach issues and I always had so much compassion for her, though I personally felt very grateful I had missed that bullet. Well… that bullet finally hit March 2012.
Though I have had no digestive issues (for the most part) my entire life, I do have very painful menstrual cycles due to endometriosis. Earlier this year, my gynecologist suggested having a full blown hysterectomy. She insisted that that was all that could be done to help me. I refused to believe that, and sought out a holistic doctor. This doctor eliminated all dairy, beef and pork, even Teflon cookware and plastics (water bottles, cutting boards, Tupperware, ALL PLASTICS). She basically said I could eat “bird”, wild fish, vegetables, fruit and made sure to inform me that everything must be organic, as much as possible, especially soy products. She told me to give the program three months to see improvement with my cycle. I was open to this new way of living as my intuition told me surgery was not an option (at all) from an emotional standpoint. I was right on board with all the changes my doctor wanted (need I mention I had been doing the Atkins Diet since 1991? This was a huge change for me!).
Within 24 hours, I literally flipped my kitchen upside down! My parents were thrilled with all the free food I delivered to them. I purchased stainless steel cookware, glass Tupperware and removed all plastics from my home. I was eating just as she prescribed and in the midst of all the changes (and missing my favorite food – CHEESE), I noted my list of new foods did include whole wheat breads, pastas, crackers (all the things I couldn’t have on Atkins), sweets, sandwiches, you get the picture. An item I was particularly happy I could eat again was pizza. I decided to treat myself and enjoy pizza with crust! Granted, it had no cheese, but it was delicious!
Quite quickly into the diet change, I started feeling very tired, my head was foggy and at times it was difficult for me to form sentences. I was not a fan and seriously concerned. I usually have a ton of energy and it was gone. I was put on progesterone cream as part of my treatment for endometriosis/high estrogen levels and thought that might be causing my symptoms, that maybe I was allergic to something in the cream. I went off progesterone and at the same time was scaling back on carbs, as I thought maybe those made me tired, as well, since my body wasn’t used to them.
This went on for a few months. July hit and I was sick for most of it; my stomach just didn’t seem to process anything well. I thought I had gotten a bacterial infection, possibly in Mexico from a short trip I had taken a couple months before. I had blood work done which ruled out bacteria or any food allergies, but instead showed that I was pre-diabetic! I was shocked! Things weren’t getting better; I was losing weight, had consistent headaches and constant stomach and bathroom issues and felt mainly stuck in my home. My holistic doctor seemed baffled by my new symptoms. I needed answers! I went to my primary care physician. He decided to test me for Celiac disease, based on the symptoms I had described. I was clueless about Celiac, but of course said “LET’S DO IT!” and had them draw my blood.
When my results came in, I was told a positive reading for Celiac is over a 4 count. My blood work tested greater than 100!!! It was off the charts! Let the fun begin! I learned quickly that when you get diagnosed with Celiac it’s basically good luck and good bye. There is limited help or direction from the doctors other than “don’t eat gluten.” (Really!) I have been on Google more than I care to remember, studying constantly. The things I am learning are unreal. Those who have Celiac, gluten is not the ONLY thing you can’t eat. They also have to stay away from artificial colors/flavors, night shade vegetables (for some), Carmel flavoring, certain spices and the list goes ON!
I literally do a food autopsy on everything I put in my mouth and on my body, carry a magnifying glass to make sure the small print doesn’t say “may contain wheat, barley, rye or oats” – if it says “may”, I just STAY AWAY. Eating out is now a concern due to cross contamination. I am so sensitive to gluten and wheat that a gluten-free item can still cause me upset if it wasn’t prepared in a gluten-free kitchen. For this reason, it’s so important to know your restaurants, manufacturers’ practices as well as knowing what food to shop for. I actually had a chapstick that had Triticum (wheat) in it! Had I not taken charge of my own health care, I wouldn’t have known Triticum is wheat. I Google every word I don’t know to be safe.
In my research, I have learned that a large amount of other health issues people suffer from are tied to Celiac. In reading blogs written by Celiac patients, I came across quite a few written by women who had had a hysterectomy only to find out they had Celiac all along and THAT was what was causing them pain. Their surgery could have been avoided and now they are left with emotional scars due to misdiagnosis and lack of information. I am beyond blessed I didn’t have a hysterectomy as that never felt like the right move for me – my spirit knew something else was going on.
Once gluten is FULLY REMOVED, many symptoms seem to clear in a couple of weeks. Many people have symptoms clear up that they never knew were associated with Celiac such as asthma, body pain, arthritis, headaches, etc. Some people never even have symptoms until they die of some unrelated issue that was caused by Celiac, hence, the “silent killer.”
If you have any symptoms, such as stomach upset, diarrhea, constipation, fatigue, foggy brain, difficulty concentrating – get checked. Typically it takes years and many other sub sequential health problems to get a positive diagnosis. I truly was blessed that my results were off the charts as now there is no question I do have Celiac. Others often get a false negative, and continue to eat food that is causing internal damage without them knowing it.
If you’ve tested for Celiac and believe you possibly got a false negative, there is now a DNA test you can take to further determine if you have it. You’ll want to request to be tested for H.L.A. DQ2 or DQ8 genes. If the DNA test comes back negative, you CANNOT physically have Celiac, so at least you can go back to the drawing board to see what else is causing your symptoms. If the test is positive, it doesn’t mean you necessarily have it, but it’s a good indicator that if eating gluten products makes you feel ill, you have a high possibility of having Celiac, and the best way to confirm this is via an endoscopy. Not a fun procedure, but worth the knowledge either way!
In my case, because my blood work was over 100, my doctor and I decided there was no need to put my body through that procedure. I know I have Celiac. It all makes sense now. I more than likely had it for YEARS, but because I was on the Atkins diet and wasn’t eating a lot of breads or sweets, it may have lay dormant in my system, possibly creating damage I was unaware of. Had I not changed my diet in March, I may have gone years undetected. This is another reason that if you do test positive for Celiac, do everything you can to get your immediate family tested as well. It’s very possible they are walking around with this “silent killer,” slowly destroying their system without knowing it.
I am only in week two of my “wheat recovery program” (ha!); humor and attitude is going to help me get back on my feet. If you are missing either one of those, you are in big trouble. This has been quite a shock for me, going from doing P90X workout daily to barely having the energy to write this article. I believe awareness on all levels of life is crucial. After reading all the unfortunate illnesses, others have gone through to finally get the proper diagnosis, I am so blessed to have gotten my results quickly so I can begin to rebuild and repair. I now have an answer to my recent stomach battles, fatigue and foggy-ness, and therefore can work diligently to repair my body. I am excited to take care of my body and give it the rest it deserves as it’s taken a beating and I didn’t even know it was happening!
What to do if you are diagnosed with Celiac
The fact of the matter is, once you are diagnosed, regardless of what you spend on health insurance, you may find you are on your own. You should join a support group and learn how you can make positive changes in your health as fast as you can. Mistakes, like eating the wrong food, will most likely happen, but go easy on you. You may be down for a couple of days, but grab a book or do what you enjoy to help bring yourself some peace. Let your family and close ones know what you are going through so they can be supportive in finding food options that you can enjoy together.
If you have questions or have Celiac, let’s chat! As a community we can learn more together.