It’s been 17 months since a biopsy confirmed my celiac disease (CD) in June 2016. Shortly after, my son was diagnosed in August, then my niece in November. As with any chronic illness, I’ve had some ups and downs.
Intro to IgA-tTG
When people are first diagnosed with celiac disease, they often ask, “When will I feel better?” and “When will my labs come back into normal range?” I had those same questions. I think my CD was diagnosed fairly early… When I went gluten free, my symptoms improved gradually.
IgA-tTG (we can just call it tTG for short) is used as a screening tool. If it’s above normal, an endoscopy with small bowel biopsy (the “gold standard”) is needed to diagnose celiac disease. That’s what happened in my case because my tTG was just above the normal range.
In some cases, tTG alone is used to make a diagnosis. In our son’s case, they did not perform an endoscopy because:
- His IgA-tTG was very high.
- His genetic testing indicated he had a high risk DQ2 genetic profile.
- He was having gastrointestinal symptoms (diarrhea).
- A primary relative (me) was also diagnosed with CD.
The gastroenterologist noted that an additional confirmation of diagnosis would be if my son’s symptoms improved on the gluten free (GF) diet. In this interesting study, “Decrease by 50% of plasma IgA tissue transglutaminase antibody concentrations within 2 months after start of gluten-free diet in children with celiac disease used as a confirming diagnostic test.”
In another study in kids, the authors noted that “nearly 1 in 5 children with celiac disease in our population had persistent enteropathy despite maintaining a gluten-free diet and immunoglobulin A tTG was not an accurate marker of mucosal recovery.”
At this point, particularly in children, the IgA-tTG may be helpful at diagnosing CD, but may not be the best marker of gut healing.
Here’s a look at what happened to our labs after CD diagnosis and the first few months on the GF diet.
Results of Testing
|IgA Tissue Transglutaminase (IgA-tTG)
(0-19 units negative
20-30 weak positive
*GF diet started 6/1/16
|>100 (the lab didn’t specify a number over 100)||74||
*GF diet started 8/15/16
*GF diet started 12/1/16
You might notice that all of us had low Vitamin D, which is common in new-onset celiac disease due to intestinal malabsorption.
It is also recommended that close relatives are also tested for celiac disease. Here are the results of my family’s IgA-tTG:
- oldest son and daughter: <1
- my mom: 4
- my sister: 5
- my dad: 19– Since he already had a colonoscopy scheduled, he went ahead and had an endoscopy with biopsies which turned out negative for celiac. (Yay!)
Right After Diagnosis
The day after my endoscopy, we welcomed two foster children into our home. When you add new family members, it’s always a little chaotic. My biopsy results returned two days later, confirming my diagnosis of celiac disease.
It was overwhelming. I was implementing the gluten free diet (only for myself, because our son hadn’t been diagnosed yet) and preparing separate meals for our family and myself. Our foster daughter caught on quickly, and would watch reading every label. She would ask, “Does that have gluten in it? Can you eat that?” I realized quickly that I wouldn’t be able to continue making separate meals for everyone. Our dinners became pretty much gluten free (except for the occasional two pots for regular and GF pasta), which made life much easier.
I had a DEXA bone scan which revealed that I have osteopenia, a condition where my bone mineral density is lower than it should be. Osteopenia and osteoporosis are both common in celiac disease.
I ran my fastest marathon ever, besting my previous time by over five minutes. (Since that was the third time running the same marathon, I could compare times straight across.) I felt stronger in the second half of the race, whereas in previous races I had felt exhausted and weak. I was able to use this time to again qualify for the Boston Marathon, which I will be running in April 2018.
One night I accidentally glutened myself when I ran out of white sauce and substituted a brand in a jar. The next morning I felt nauseous and had diarrhea. I looked at the label on the white sauce (ooops, I didn’t look the night before) and it contained barley malt. Tough lesson learned: check every ingredient list. Every time.
When I reached the 6 month mark I started feeling so much better. My energy levels were higher, and I was having less diarrhea. I also gained a few pounds as my body’s absorption of nutrients improved.
At this point, I felt like my energy levels were declining. I got my Vitamin D levels back and they had tanked again. I was frustrated with what felt like a lack of forward progress.
One day in May, I casually looked at my bottle of vitamins and I couldn’t believe what I saw. In tiny bold letters, it said: Contains soy ingredients. Milk and wheat ingredients are used in fermentation process of enzymes. Product may contain traces of milk and wheat. produced in a facility that processes tree nuts, eggs, shellfish, and fish. My heart sunk. I was on my second bottle of vitamins. I had taken these vitamins daily for about 180 days in a row. I had unwittingly been glutening myself. I have no idea how I missed it both times I bought these vitamins. Tough lesson learned again: check every ingredient list. Every time.
After getting off the vitamins, my energy levels returned. It was also summer, so I was able to get plenty of Vitamin D while running outdoors.
I have been more comfortable eating out at restaurants. I use the Find Me Gluten Free app to choose restaurants that offer a gluten free menu and cater to people with celiac disease (when possible).
My intestinal symptoms are improved, but not entirely gone. I still have diarrhea sometimes. I have to remind myself that while I have been treating celiac disease with a gluten free diet, I still have IBS.
Remember learning about the five stages of grief? I’m pretty sure I went through them after my celiac diagnosis. I’m getting closer to the last stage of “acceptance”, but I still get frustrated or angry sometimes when I just want to eat a food that doesn’t have a gluten free substitute (red licorice anyone?!).
I’ve tried a lot of gluten free products. Some taste great, others leave my taste buds disappointed. Here are some of my favorites. Note: I do not have an affiliation with any of these brands, companies, or organizations. I simply promote them because I like them.
My shelf is still filled with several dozen kinds of gluten free flours, but I’ve finally narrowed it down to my favorites:
- Bob’s Red Mill 1:1 Baking Flour
Here are some of my other GF favorites:
- Against the Grain GF Baguettes
- Mission Gluten Free Tortillas
- Franz Gluten Free Sandwich Bread
- Dr Schar Table Crackers (I just recently discovered these. When you’re sick it’s nice to have soda crackers.)
- New Cascadia Traditional bagels and french bread (local company)
- Envirokidz Gorilla Munch cereal (my son’s favorite)
Favorite recipe links:
- Gluten Free The Definitive Resource Guide by Shelley Case, RD. My go-to reference for gluten free eating.
- Subscription to Gluten Free Watchdog by Tricia Thompson. She tests individual foods for gluten (and arsenic) content. Great for looking for which foods have been tested and are safe to eat.
Websites I use the most: