A Real Gluten Story

This story is typical of many patients I see, with chronic digestive issues. Gluten can play a major role in causing and perpetuating many digestive problems, even if you don’t have Celiac Disease. There are many forms of gluten sensitivity that do not present with the findings that define Celiac Disease, an autoimmune condition. In fact, the majority of symptoms from gluten sensitivity relate to systems other than the GI tract, especially the nervous system. If you want to find out what gluten can do there, read the Article “Doug’s Great pizza Misadventure. This is what actually happened to me!

First off, a big thank you to Dr. Weed. A good doctor knows the right questions to ask. I came to Dr. Weed to explore a minor skin condition I had and found out in the end that I have an autoimmune disease. I’m eternally grateful to have had his good advice and to have been diagnosed at 44, rather than to be living with the ill-effects of AI and not have the opportunity to treat it.
I initially requested a Heidelberg test from Dr. Weed because I’d heard that rosacea could be related to GI bacteria and wanted to explore. Based on the results of my Heidelberg test, Dr. Weed recommended I follow up with a Comprehensive GI Analysis, food allergy testing and eventually a GI Permeability test to look for the presence of Leaky Gut Syndrome.
Below is a record of my experiences over the last several months. Apologies for the lengthiness!
I reduced gluten in my diet in December 2012, then went to Yosemite Park Dec. 22-24th and (since I was on vacation, as is my habit), ate whatever I wanted while there. This included pasta and toast.
On the third day, driving home from Yosemite, I’m a wreck. Sneezy, itchy, watery eyes, major congestion, misery. All I could think was that I must be allergic to pine trees, as someone had suggested to me. It takes me 3 days to recover.
First week in January, I get lab tests that confirm that I am gluten sensitive, so I eliminate it all together.
My “normal” lately (for the last year or so) had been puffy face and puffy eyes, especially in the morning. At night time, my eyes would be very sensitive to light. Would run around dimming lights in the house. Also itchy. After 3 days of eliminating gluten, this went away.
Then accidentally ate gluten, “hidden” in the rice vinegar in my sushi. Within a few hours of consuming….itchy watery eyes, sneezy and irritable. This is a tell-tale sign.
Back on the horse. After another two weeks, I feel better than I ever have…ever?! My body/joints move really freely, I have great energy, and my morning “brain fog” has dissipated. Used to sleep 10 hours and not feel rested; get up really groggy. Happy girl.
That night, I tear into an Asian salad that must’ve had gluten in the chicken marinade. By the time I put down my fork, I’m projectile sneezing. Within an hour, itchy, watery eyes and a head full of congestion. Flu symptoms for a week.
About a month later, I took a test to determine if I had any cross-reactive food sensitivities. Labs came back indicating no other sensitivities, other than gluten. Dr. Weed thought that this was highly unusual and likely not an accurate result. We decided to take the “try and see” approach. Gladly ate a teacup full of ice cream that evening. Next day (all day): intense brain fog and lethargy. Didn’t leave the couch.
For 10 years, I’ve played a sport competitively and loved it. Beach volleyball is an intense workout and during spring, summer fall, I played on average 8 hours per week. Plus throw in a yoga class. My diet was clean clean clean: fresh, whole produce; lentils; greek yogurt; a little fish or chicken here or there, but not much. Juiced fresh veggies a few times a week. Brown rice. Srouted wheat toast (one slice) with an egg for breakfast. Couldn’t lose weight. Had about 5-10 extra pounds on me. Which is not a lot. But I felt like I was working AWFULLY hard to be carrying that extra weight.
It’s now the first week in March. I changed up my exercise routine when I started my new diet. Instead of volleyball, I walk 2 miles, 5x per week. This is easy and less strenuous than the previous routine.
I am 3-4 pounds lighter and have lost some girth: clothes are fitting better. Most importantly, I don’t feel like I’m working so hard (at all?). I am maintaining or slowly losing weight with ease.
My food sensitivities are clearly severe and my antibody numbers are indicative: thyroid peroxidase antibodies = 424 per blood test results.
My goals are as follows:
 To not get (powerfully, significantly) sick from accidental gluten consumption.
I’d like to feel like I have a safety net.
 To get my antibodies levels down; as close to normal as possible
To do this, I’ve chosen to also add meds to my strategy: this week, I started taking 1.5 mg per day of Low-Dose Naltrexone (LDN). Taking LDN for Hashimoto’s is an off-label use for the drug. LDN appears to regulate the immune system and bring down antibody levels. Especially when used together with thyroid/hormone meds. When used together, antibody levels reportedly drop quickly. According to fellow LDNers, most patients reduce their thyroid meds as they increase their dose of LDN, sometimes eliminating the thyroid meds altogether. These patients remain on LDN.
For anyone else considering an approach like this one, I strongly suggest the following:
 Read the book “Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal?” by D. Kharrazian
 Be sure to do a comprehensive GI analysis and address any possible issues with Candida, yeast, etc
 Take care of your adrenals and support your thyroid gland as much as possible through diet, lifestyle and dietary supplements, as necessary
 Consult with others. I highly recommend the Facebook support group run by Deb Anderson Eastman: Beating Thyroid Disease with LDN. Be sure to share your info with Deb and the group and if you’re considering taking LDN, let Deb know. It is a “closed” group, for privacy purposes. Click to join, introduce yourself and give Deb a day or two to get back to you.
This ties in with my goals and strategy above…to get my immune system functioning properly and to have optimal health as I grow older!
I can now look at my mom and see that all the symptoms of Hashimoto’s that I’ve had…my mom has, times 10. My mom also had breast cancer in her 70’s. Had surgery, chemo and radiation and is now in remission. Now in her 80’s, she is well down the road with dementia.
Both cancer AND dementia are NOT un-related to our immune systems. In a backhanded sort of way….I am INSANELY lucky to be finding out about all this at 44, so that now I can do something about it.
I was a little freaked out by a) my diagnosis and b) what seemed like a radical diet (and lifestyle?) change when this all first happened. My neighbor, who’s been gluten-free for years, told me this: it won’t seem like a big deal when you start feeling better. Couldn’t have been more right.
I live in Berkeley and here are my new, gluten-free-friendly haunts…
Gather Restaurant, for date-night, etc.
Café Gratitude for dessert, especially the chocolate almond, mousse-like cake. All their desserts are gluten- and dairy- free and when I say tasty, I mean BETTER than any gluten-FUL desert I’ve had. To die for.
When you feel like pasta….Go get Thai Food – order pad thai. Or go to Paisan Restaurant for gluten-free pasta and Bolognese sauce, with a salad. It’s KILLER and you won’t leave feeling like you have a brick in your stomach.
Thai Food in general is a good choice. Curries and brown rice – can’t go wrong.
La Mediterranea on College Avenue. Ask for their gluten-free menu. Café Colucci A funky Ethiopian restaurant on Telegraph at Alcatraz. Ask for the gluten-free injira (flatbread). Seriously great food.
I am 0 for 2 when ordering a chicken salad that’s not specifically labeled gluten-free. Seems like a good choice on the face of things, but marinades are death. Stay away.
If others out there are like me….I need to eat often and don’t want to be caught in a pinch without something I know I can eat safely. Especially when traveling. I keep snacks in my purse and in my car.
Justin’s little packets of peanut butter are essential. I also keep gluten-free turkey jerky and corn nuts. Lara bars are good too.
C.E. 3/7/13