Today marks one year since my Celiac diagnosis. My Celiac birthday, if you will. I’ve thought a lot about all of the frustrations I encountered trying to navigate the medical system after my diagnosis. One of the ways I want to celebrate my Celiac birthday is by writing a very practical, straight forward guide for newly diagnosed Celiacs.
Average time span from onset of symptoms to diagnosis is 8-11 years for most Celiacs. A lot of damage can occur during that time, but most doctors (even Celiac “specialists”) will not explain to a newly diagnosed patient what that damage might be or proactively evaluate the patient for these issues. Here’s what I learned while I negotiated my first year and what I wish somebody would have told me.
If you are a brand “new” Celiac, DO THIS:
Step 1- Do NOT listen to your doctors first piece of advice, especially if it sounds like this, “You have Celiac disease. Don’t eat gluten. I’ll see you in three months or so.” Your doc might be acting like this is a “no big deal” diagnosis, but it is huge and you need to get busy advocating for yourself. Take these four actions ASAP:
- Immediately adopt a strict AutoimmuneProtocol diet. A straight gluten free diet will not jumpstart your road to recovery. Healing will happen much faster and your antibodies will drop rapidly with AIP.
- Get copies of the blood tests and endoscopy results that lead your doc to this diagnosis. Request your medical records. Read them & reread them.
- Get a blood test, called the “Array 4: Gluten-Associated Cross-Reactive Foodsand Foods Sensitivity,” done through a lab called Cyrex. Knowing if there are other foods your body sees as gluten, and that you should avoid, can help you in calming your immune reaction down faster.
- Schedule another blood test (to look at antibodies) for a month post diagnosis. During that month learn everything you can about Celiac and how to read your blood test results. Seriously . . . make it your job. The goal is to know as much as your doctor does about Celiac (if not more) by the next appointment.
I definitely know more about Celiac than most of my doctors now. This benefits me so much, because I know how to call them out on misinformation or how to recognize a gem. It has also helped me not get accidentally glutened by medicine the doc was recommending more than once.
Step 2- If you adopted AIP like you were supposed to, you should start to feel better very soon. Use that extra energy to schedule some additional check-ups. You might be seriously deficient in many vitamins and minerals. Get familiar with what ideal, not lab normal, ranges are in these vitamins and minerals, so that if you are deficient you will know what to shoot for in order to really, really feel better. Also, learn what the symptoms of deficiency are, so you can speak with your doc about treating it quickly if necessary. Go see your primary care doc to get the following evaluated*:
- B’s (especially B-9 & B-12)
- D (this one is a biggie, even for non-Celiacs)
Treating my B & D deficiencies was enormous in my recovery. I felt so much better when they got into the ideal range. *If explaining that you have been diagnosed with Celiac is not enough to get your doc on board with these evaluations, get a new doctor. Totally not kidding. In one year I’ve switched doctors six times. I want the one that wants to be on my team.
Step 3- Now that you are eating a better diet and have addressed vitamin/mineral deficits, you’ll have even more energy to move on to the next step. There is a chance you have some other health issues that like to be buddies with Celiac.* Learn about the symptoms of the following and the best methods for evaluating them, then get with your doc to take a look:
- Type 1 Diabetes (this should really be an automatic screening, but many docs don’t do it)
- Hashimoto’s Thyroiditis
- Gall Bladder Insufficiency
- Pancreatic Insufficiency
- Dermatitis Herpetiformis (this is not Herpes, it is a skin disorder)
- Primary Biliary Cirrhosis (Autoimmune Liver Disease)
- Neurological problems (like migraine or neuropathy)
It took forever, but I finally got a doctor to help me address pancreatic issues and now I can digest food so much better. *The opposite is also true, if you have one of these conditions, insist that you be evaluated for Celiac.
Step 4- You are well on your way and probably several months post diagnosis by now. You might still be struggling with some hard to identify or hard to treat issues that pop up a lot for Celiacs. Get with your doc to find out if you are having trouble with the following:
- SIBO (a bacterial overgrowth in the small intestine that is really common for Celiacs)
- H. Pylori infection (might be causing you to have low stomach acid, which makes it tough to digest food well)
- Other bacterial, yeast, or parasite infections
I had a SIBO and a parasite infection. Unfortunately, it was not until long after diagnosis that I finally found a doc to help me identify them. Getting them treated made a huge improvement in my recovery.
Step 5- Now that you’ve dealt with all that (as though it was not even hard work), here’s some extras to consider:
- Taking a probiotic to aid the gut.
- Whether or not you need to avoid specific kinds of carbs for a time in order to help your damaged gut heal (look into the Specific Carbohydrate Diet)
- Whether or not you need to avoid specific kinds of sugars for a time in order to help your damaged gut heal (look into FODMAPS & fructose malabsorption)
And finally, that OTHER thing . . . Celiac disease, particularly if your diagnosis was very delayed, can put you at greater risk for certain kinds of cancer, like intestinal lymphoma. The risk level appears to be elevated for the first two years post diagnosis and then, if you follow a strict gluten-free diet (easy with AIP) the risk returns to normal. I try not to dwell on this and don’t choose to talk about it much on the blog, but if you are a fellow Celiac, get educated about it. You can learn more about it here.