You were diagnosed with celiac and your health isn’t improving. . . now what?! Have you read all the blogs, books, etc. that tell you that after being diagnosed with celiac your life just gets better and better?! In fact, you should be feeling fabulous!!!
My Experience of NOT Feeling Great After Going Gluten Free
After I was diagnosed, everything I read said I would be feeling fabulous within just a few months and life would continue to get better and better. I certainly had a boost the first month of going gluten free. I felt so good and more energy than I had felt in years!!! Then my health began to spiral. . . down, not up. I couldn’t find any information about what I was going through. Everything was sunshine and lollipops, but nothing about continued health issues and fatigue.
What is wrong with me!!!!
Here I was gluten free for 4 months and still not feeling fabulous! A few months after this picture my doctor ordered 6 weeks of IV iron to get my levels up.
So, I had my biopsy confirmed diagnosis. I was so sick that my doctor didn’t even do the blood test; he just got me in for a biopsy asap. (I wish he would have also done the blood work. It would be interesting to see what it would have been. My cousin had severe symptoms and DH and his blood work was negative. [Everyone with DH (Dermatitis Herpetiformis) has celiac disease, but not everyone with celiac disease has DH.]) I definitely had celiac and I was eating gluten free, why wasn’t I getting any better.
Live and Learn
1st I “thought” I was being 100% compliant, being gluten free. (It’s been 13 years, so I may miss some things that I was doing wrong.) I missed that some of our favorite foods contained soy sauce which had wheat in it. We love Korean food and that was the biggest culprit, where we were still getting gluten. It seems like there were one or two other places that we missed realizing there was gluten. Food wasn’t labeled as well as it is now. (It still could be better, they don’t have to list rye or barley in their list of ingredients because they are not top allergens.)
2nd at church I was still trying to take the sacrament. That little piece of bread once a week is too much of a challenge on a body that has to be gluten free. I went through a difficult time wondering if I didn’t have enough faith to take the Sacrament without getting sick. We now take our own bread for the sacrament and many churches allow members to bring gluten free communion wafers. (Picture is a clickable link.)
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3rd I didn’t worry about gluten in my body products: make-up, sunscreen, shampoo, lotion, etc.
I believe those were the main issues, for me, with going gluten free and figuring it all out!
But, my body still wasn’t happy! I believe that I had active celiac for at least 18 years before finally being diagnosed! I searched for answers so many times and even asked doctors to check me for celiac 2 years into some of my worst symptoms and was refused the testing! After diagnosis, the little bit of gluten I was getting here and there was continuing to spiral my health downward.
Finding my “fabulous” health or at least stable health
It took finding all the gluten we were missing and removing it all! It took understanding that symptoms aren’t always going to be the same and that gluten can affect you in many ways that you don’t understand or may not see initially.
I went to a medical internist and all of my blood work was wonky! (All of this was going on while still figuring out the gluten I was still “accidently” ingesting.) Most concerning, were my liver levels. Then, I also developed a crazy rash around my ribs. It really didn’t itch, was brownish and felt like velvet. (I already had 2 doctors call it eczema. It’s not eczema!) It turned out to be a rare skin disease. I fully believe it is a result of my years and years of active and undiagnosed celiac disease and how my body reacted to it!
The short part of this is that all of my symptoms eventually led to having my gall bladder out and after it was removed, I finally started to really feel “fabulous” or at least much better than I had in years!
Doubting Your Test Results
Testing for celiac, the gold standard is still a biopsy of the small intestine! You are more likely to get a false negative than a false positive. It is important that your doctor do lots of biopsies of the small intestine because the damage happens in patches and can be missed. Also, you need to be eating gluten in order for the tests to be accurate.
If your biopsy comes back as positive for celiac, believe that diagnosis. Once you have gone gluten free your blood work should always come back negative for celiac disease. If it doesn’t, you are still getting gluten somewhere!
I had a doctor do a follow up with blood work, 3 years after I was gluten free, and tell me I didn’t have celiac disease. He didn’t understand that this is normal and there are no markers when you are strictly gluten free! (Also, tests are highly inaccurate once you are gluten free and no doctors agree on how long you have to eat gluten before those tests become accurate.) Many, many doctors do not truly know or understand celiac disease. For many years, they have been taught misinformation and old information in medical school and haven’t been taught the new research which has been ongoing. It’s important for you to know and understand celiac. Get accurate information because your doctor might not have it.
Stages of celiac damage
From the biopsy, the damage is rated by stages, according to how much damage there is to the villi. The more damage, the longer it will take for you to recover. For some, they heal and bounce back after a few short months of being gluten free. For others, it may take as long as 5 years of being strictly gluten free before really starting to feel good! Knowing which stage can be helpful in being patient.
For me, it took 1 1/2 years to really start feeling good and having my gall bladder removed. However, I had a set back, 3 years (after diagnosis) because of gluten in my shampoo, conditioner, body wash and hairspray!
Possible Reasons You Are Not Feeling Fabulous. . .
- Still getting gluten somewhere in your diet. find out where.
- Cheating on the gluten free diet. You REALLY NEED TO BE STRICT! NO CHEATING!
- Look for areas in you home or where you eat out that you may be getting cross contamination and cross contact.
- You may need to go dairy free along with being gluten free. Damage in the intestine can affect your ability to break down lactose. Many can tolerate dairy once they are strictly gluten free and dairy free for a year or so. Slowly add dairy back to your diet to see how you are tolerating it.
- You may not react well to oats. Oats should be avoided for the first year to give your gut time to heal as oats are hard on the intestines. Add in slowly 1/4 cup a week and slowly increase to 1 cup a week, if you are feeling good.
- Low vitamin and mineral levels; especially iron and vitamin D.
- Other medical conditions caused by long term, untreated, active celiac disease.
- Other diseases and conditions that often go along with celiac disease.
- You might have the MTHFR Gene Mutation
- You may also have Small Intestinal Bacteria Overgrowth.
- You may have complications from Metabolic Syndrome.
- *You may have Refractory Celiac disease, sometimes called Refractory Sprue, this is very rare.
Give Yourself Time!
It’s taken a while for you to get to this point! It didn’t happen all of a sudden, but gradually and probably imperceptibly when it began to have problems. Remember it takes time, but the sooner you can be strictly gluten free the sooner you will begin to see real results and be able to figure out any other problems your body may be having.
Strictly Gluten Free!!!
Eliminating the gluten by being strictly gluten free is the only way to know if the problems your body may be experiencing are from the gluten or something else! I can’t stress enough how important it is to be strictly gluten free when you have celiac disease!!!
Don’t assume that your medical issues aren’t related to snitching a tiny bite of your favorite gluten ____________ (fill in the blank). That tiny bite can wreak havoc on your body! Don’t assume that eating a controversial product like Cheerios isn’t what is causing your continued health issues or general lack of fabulousness. If you are having ongoing medical issues don’t keep eating Cheerios, Lucky Charms, or anything that contains any kind of gluten even if you think you aren’t reacting to it! On going medical issues is a symptom that your body is possibly reacting to gluten!
If you love Cheerios and Lucky Charms and want to give them a go (personally I wouldn’t and don’t recommend it), wait until you are feeling really good and keep a food journal and keep track of even minuet feelings and symptoms (even if you think it is a coincidence and doesn’t matter.). A food journal will help you see if there are patterns.
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