In Order To Diagnose Celiac Disease, Is Biopsy Avoidable?
Posted: July 9, 2010 Filed under: Living With Celiac Disease | Tags: Biopsy, celiac disease, Gastroenterology, Medical News Leave a comment »As a follow up to my last post where I posed the question, Is a Blood Test Good Enough?, I thought I would share this article that I came across today from Medical News Today. It provides some hope that we are getting closer to the day where blood tests might be considered reliable enough for the medical community to feel comfortable offering a diagnosis.
Diagnosis of celiac disease is based on a characteristic enteropathy in an intestinal biopsy and evidence that these changes are gluten-triggered. The appropriate use of simpler and more accurate tools would add reliability to the diagnosis of celiac disease. Thus, the celiac disease-related serology might have a key role in defining new diagnostic standards for celiac disease.
A research article published on July 7, 2010 in the World Journal of Gastroenterologyaddresses this question. A new diagnostic standard based on serology alone could make intestinal biopsy no longer mandatory for diagnosis of celiac disease. With this purpose in mind, a research team from Argentina aimed to establish the diagnostic performance of several serological tests, individually and in combination, for diagnosing celiac disease in patients with different pretest probabilities and to explore potential serological algorithms to reduce the necessity for biopsy.
This study demonstrates that the DGP/tTG Screen assay could be considered as the best initial test for suspected celiac disease. The authors also show that combinations of two serology tests, including the DGP/tTG Screen and IgA a-tTG or IgA a-DGP, might be able to diagnose celiac disease accurately in different clinical scenarios, and that they could diagnose or rule out the disorder, obviating the need for duodenal biopsy in more than 92% of individuals in the high- and low-risk populations.
If future studies validate these findings, new diagnostic strategies for celiac disease could be proposed.
Reference:
Sugai E, Moreno ML, Hwang HJ, Cabanne A, Crivelli A, Nachman F, Vázquez H, Niveloni S, Argonz J, Mazure R, La Motta G, Caniggia ME, Smecuol E, Chopita N, Gómez JC, Mauriño E, Bai JC. Celiac disease serology in patients with different pretest probabilities: Is biopsy avoidable? World J Gastroenterol 2010;16(25): 3144-3152Source:
Ye-Ru Wang
World Journal of Gastroenterology
Is a Blood Test Good Enough?
Posted: July 8, 2010 Filed under: Living With Celiac Disease | Tags: Biopsy, celiac disease, Diagnosis, EGD, gluten-free 3 Comments »
If you’ve done any research about Celiac Disease you’ve probably come across a reference to the intestinal biopsy being the “gold standard” in properly diagnosing the disease. My pathway to a confirmed diagnosis of Celiac Disease started with a blood panel performed by a naturopath that revealed a high sensitivity to gluten, wheat, barley, and rye. From there, I had a Gastroenterologist perform another blood test and follow it up with an EGD and a biopsy. The biopsy confirmed what the blood test revealed — I had Celiac Disease. In fact, as they were beginning the EGD procedure, my doctor told me that, based on my blood work, he was sure I had Celiac because they were the highest numbers he had ever seen. Why do the biopsy then, I wondered as the anesthesia took effect and I drifted off to sleep.
Having the biopsy did nothing to change my prescribed course of treatment. The results of both the blood test and the biopsy yielded the same result– a diagnosis of Celiac Disease and the instruction to maintain a gluten free diet. So what was the value of the biopsy? In my estimation it simply confirmed what the blood test told us. It gave the doctor the peace of mind that he “measured twice and cut once” in providing me with a diagnosis. But what did it do for me? I was fine with the results of my blood test and was fully prepared to accept the diagnosis and adopt the gluten free lifestyle. Was the biopsy really necessary?
This question has come up again as just over a month ago, my four year old daughter was diagnosed with Celiac Disease through a blood test administered by her pediatrician. She was referred to a Pediatric Gastroenterologist and just had her appointment yesterday. Not only did he repeat the blood tests but he suggested that a next step would be an EGD and biopsy. What really gets me is that he repeated the blood test even though we told him that our daughter, at the direction of her pediatrician, has been completely gluten free for the past month. Even after he admitted that in a young child the intestine can completely heal within a month of being gluten free, he still suggests that a next step might be an EGD to evaluate the condition of her small intestine? I might have been alright with a suggestion of having our daughter take a gluten challenge where she would consume a diet containing gluten for a month or two and then come back in for another blood test but it didn’t make much sense to do the tests now with her being off of gluten for about 6-weeks. Is he really going to be able to find anything in the blood test or the EGD if there is no gluten in her system to trigger an auto-immune response or to leave visible damage?
Is this just a case of a doctor blindly following protocol? Do we need to submit to his suggestion of further testing when we have seen with our own eyes the difference that a gluten free diet has made in our daughter’s life (including her distended and bloated belly that vanished within days of being gluten free)? Am I just an overreacting parent? My gut (no pun intended) reaction is to resist this pressure from the doctor, save our daughter from unnecessary testing, and continue to pursue our gluten free lifestyle.
What do you think?
Gluten Free Shopping – It’s Not Just The Wheat I’m Worried About
Posted: July 1, 2010 Filed under: Gluten Free Diet, Gluten Free Grocery Shopping, Living With Celiac Disease | Tags: celiac, diet, gluten, gluten-free, groceries, health, shopping 3 Comments »
I will attempt to keep this post from being a rant and instead will use it as a reminder to those of you that have recently been diagnosed with Celiac Disease. Gluten is present in more than just wheat. I don’t know about you but I continue to have the experience where if I ask someone if a product contains gluten they often base their answer on whether wheat was used as an ingredient. This just happened to me today when I was in my local grocery store that actually has “gluten-free experts” on staff and roaming the aisles to assist you with your questions. I was interested in a particular soup that they were serving in the deli and when I mentioned that I had Celiac and need to find out if it was gluten free, their instant response was that there was not any wheat in it. While I appreciated that information, it wasn’t enough for me to make an informed decision that was in the best interest of my health.
It’s important to remember that if you are living with Celiac Disease, you need to become your own advocate and you really need to educate yourself as much as possible. And remember, “when in doubt, leave it out”. Don’t accept an answer such as, “there is no wheat in it” as a sufficient answer. Ask to see the entire ingredient list in order to ensure there is not any other ingredients that may contain gluten.
As a reminder, the natural sources of gluten include wheat (including emmer, kamut, and spelt), rye, and barley. If you are looking for a resource to help you easily identify foods and ingredients (other than the obvious) to avoid, try the Unsafe Gluten-Free Food List from Celiac.com as well as the Additional Things to Beware of to Maintain a 100% Gluten-Free Diet.
Let’s be careful out there!
Four Steps for the Newly Diagnosed Celiac Disease Patient
Posted: June 26, 2010 Filed under: Gluten Free Grocery Shopping, Living With Celiac Disease | Tags: celiac, celiac disease, gluten-free, grocery shopping Leave a comment »
Have you ever looked at a well-stocked pantry or a refrigerator full of food only to come to the conclusion that there’s nothing to eat? I don’t know if my experience is typical or not but I can remember coming home from the doctor’s office after being diagnosed with Celiac Disease and thinking this exact same thing. I was either hard pressed to find foods that were clearly gluten free or I simply didn’t know enough to make the determination of what was safe for me to eat. It was very frustrating. So, I went shopping. Admittedly, the first shopping trip after being told that you need to adhere to a strictly gluten free diet can be kind of intimidating and frustrating as well. So, in an effort to help the newly diagnosed Celiac avoid the same frustrations that I experienced, here are four steps that will hopefully get you started off on the right foot.
- Educate yourself – in order to establish a solid foundation of understanding, both of your disease as well as how to live well with your disease, take the necessary steps to become educated about Celiac and living a gluten free lifestyle. There are plenty of valuable resources available online and I encourage you to take full advantage of them. You might want to start out with the National Foundation for Celiac Awareness or the Celiac Disease Foundation to learn more about Celiac Disease. To learn more about living gluten free, try personal blogs such as Gluten Free Girl and the Chef, Gluten Free Goddess – these are the first two that I came upon once I was diagnosed. However, be sure to check my blogroll for many others that offer encouraging testimonials, insightful advice, and wonderful gluten free recipes.
- Equip yourself – if you ask, most grocery stores will provide you with a list of the foods they carry that are gluten free. Just approach the customer service or information desk and request a copy. Some, like Trader Joe’s, even have their list available online so you can print before you go to the store. There are also plenty of resources that provide a list of foods and ingredients to avoid on a gluten free diet. Or, if you are a gadget person like I am, there are some useful apps that can help. If you have an iPhone or iPod Touch, you might want to try Is That Gluten Free?.
- Enjoy yourself – one of the hurdles that I needed to get over was to stop focusing on the things that I couldn’t have or that I needed to give up. Although the hunt for gluten free foods may seem overwhelming, just remember that there are lots of foods that you can enjoy that are inherently gluten free. I personally have used this as an opportunity to eat much healthier than I used to (read: less processed foods) and have increased the amount of fresh fruits and vegetables that I eat on a daily basis as well as continuing to enjoy lean proteins. And, if your favorite marinade is a no-go because it contains gluten, use this as an opportunity to get creative, experiment, and try something new. Who knows, you may come up with something even better, the recipe to which you can share with the rest of us.;-)
- Encourage others – now that you know how difficult it is to be gluten free and how alienated you can feel at times, look for opportunities to encourage others. What you will find is that it is also beneficial to your own attitude about dealing with Celiac Disease and living gluten free. About a month after being diagnosed I had the chance to do this with a couple in the grocery store. I recognized the gluten free list they were carrying around as well as the bewildered look on their faces so I approached them and asked if I could help. I learned that she had just been diagnosed that day and had no idea what to do. Fortunately, not only could I empathize with her but I could also lend my 4-weeks worth of experience to help her along in her journey.
Don’t get me wrong, I’m certainly no Pollyanna and I have my bad moments but if you just take it one day, and one meal at a time, it all doesn’t seem so overwhelming. Best wishes to you on your journey and please let me know if you have any questions or things that I might be able to help you with.
And, for those of you that may be farther along in the journey, what are some others tips and tricks that us newbies should know in an effort to thrive and live an abundant gluten free life?
Is Bear Gluten Free?
Posted: June 22, 2010 Filed under: Gluten Free Kids, Living With Celiac Disease | Tags: children, cute things kids say, gluten-free Leave a comment »
When my four-year old daughter was diagnosed with Celiac Disease I was a little concerned about how best to communicate the news to her and even more concerned about how she would receive it. She was young enough to not really understand all of the technical details regrading why she would need to be gluten free but old enough to understand the implications and everything that she would need to give up. How could I possibly tell my little girl that her most requested meal of Cheerios would no longer have a place in our pantry?
Fortunately for me, on the very day she was diagnosed and after my wife and I explained what it meant, she gave me a sign that not only did she get it, but that everything was going to be ok. You see, she has a stuffed teddy bear that she has had since she was born. Bear, as he is affectionately called, is a constant companion and (aside from Mommy and Daddy) her favorite cuddling companion. A short while after we broke the news to her, she was sitting on the sofa, cuddling Bear and nibbling on his nose when she suddenly pulled Bear out of her mouth and asked, “is Bear gluten free”? Besides being a very cute question from a very sweet girl, this warmed my heart. It showed me that she got it. It demonstrated to me that she understood how careful she needs to be about not consuming any gluten. It gave me hope that she will be diligent in looking out for her best interests and always asking the question, “is this gluten free” in an effort to take care of herself.
I didn’t have to take Bear away from her and was able to put her mind at ease by informing her that yes indeed, Bear is gluten free. More importantly, it gave me a chance to remind her that her Daddy is gluten free as well and that she can cuddle with me anytime. I’m glad that she continues to take me up on that offer.
Do you have any cute stories about your Celiac kids and the transition to a gluten free lifestyle? Please share in the comments section!
Gluten Free Grocery Shopping – Trader Joe’s
Posted: June 21, 2010 Filed under: Gluten Free Grocery Shopping | Tags: gluten, gluten free food, gluten free groceries, gluten-free, trader joe's Leave a comment »
With the increased awareness of Celiac Disease and non-Celiac gluten-intolerance, it’s becoming easier and easier to find gluten-free items in local grocery stores. Some grocery stores, like my neighborhood Top Foods, even have a “special” section reserved to consolidate the gluten-free only products. Granted, it’s a very meager section but still, it’s a start. The PCC across the street from my office has special color-coded shelf labels to help identify products throughout their store that are gluten-free. However, one of my favorite places to shop for groceries (both pre- and post-Celiac) continues to be Trader Joe’s.
One of the things I’ve come to appreciate about Trader Joe’s since I’ve been diagnosed with Celiac Disease is how easy they’ve made it to identify their products that are gluten-free. They have come up with a nice set of standard iconography to give their customers an at-a-glance understanding of whether the product is kosher, vegetarian, vegan, fat free, and most importantly for me, gluten free. If you are interested in knowing whether a TJ’s product is gluten-free or not, simply look for this icon on the front of the package.
If you like to make your shopping list in advance rather than scanning the shelves for items, here is the most recent listing of gluten-free products at Trader Joe’s. Be sure to ask for similar lists at your local grocery store and remember, the best approach is to educate yourself and read labels. And, when in doubt, leave it out.
Question: What are your favorite stores to shop for gluten-free groceries?
Official Member of the Gluten Free Club
Posted: June 19, 2010 Filed under: Gluten Free Diet, Living With Celiac Disease 6 Comments »One of the challenges of being the parent of a young child that has been diagnosed with Celiac Disease is managing the transition to a completely gluten-free diet. Some of the reasons this can be so challenging include:
- Taking away and restricting access to foods that your child enjoys
- Finding gluten-free alternatives that taste good so that your child will eat them
- Helping your child understand why these changes need to happen in the first place
I think my wife and I had a small advantage as we helped our four year-old daughter through this transition because I also have Celiac and have been gluten-free for a few months now. This provided a frame of reference for my daughter and allowed her to focus on the fact that she and daddy have something in common rather than trying to grasp the more technical details of the disease and why she needed to stop eating gluten.
I’m not saying it was easy though. This is a girl that would have lived on Cheerios alone if we would have allowed it. But one of the things I did to help her embrace the idea of a completely gluten-free lifestyle was that I made being gluten free a really big deal. I promoted the exclusivity of it and helped her understand that she and I were in a special club–The Gluten Free Club. I told her that her brother, sister, and mommy could join if they wanted but they also needed to commit to being gluten-free. She was also informed that as a charter member of the club, she would have voting rights to determine whether they were worthy (demonstrating a consistent adherence to a gluten-free lifestyle) of being a member of the club. She seemed to really take to this idea of being part of such an exclusive club. I even made it official by making a membership card for her.
I was amazed at how a relatively simple thing like making an “official” membership card could impact a four year-old’s attitude. She showed off her card with pride to the rest of the family and explained that only people that avoid gluten may be in the club. No longer was she focused on all the things she was going to give up. Instead, she was focused on what she had gained; membership to an exclusive club that includes the following benefits:
- A restored small intestine and healthier digestive system
- The ability to absorb much needed nutrients
- No more dry skin and rashes
- No more bloated belly and tummy aches
- More energy throughout the day and no more tantrums when it’s time to sit down to eat dinner
What experience have you had in helping your young child adjust to a gluten free diet? What foods did they have the hardest time letting go of and with what did you replace it? Please leave a comment and share your story.
Gluten Free Donuts
Posted: June 18, 2010 Filed under: Gluten Free Baking, Living With Celiac Disease Leave a comment »My daughter’s kindergarten class had a “Donuts with Dad” program this morning. All of us dads got to bring our kids to school this morning, wait in line with them to enter the class room, and follow their morning routine. This included reciting the Pledge of Allegiance, singing God Bless America, and sitting at their desks in chairs that are way too small. All of the kids lined up at the front of the classroom and sang a few songs and then returned to sit on our laps and show us the special father’s day project they worked on.
The highlight of the morning was when we got to share donuts and milk together. Of course, this caused some concern on the part of my daughter earlier this week because we both don’t eat gluten (me because of Celiac Disease and her because of Gluten Intolerance) and she also has a dairy allergy. Despite the best efforts of the teacher to accommodate us by calling all around to find gluten-free donuts, we finally acknowledged that we were just going to have to come up with an alternative.
I ended up finding a recipe for gluten-free cake donuts over on the Gluten Free Taste of Home blog. The thing I loved about this recipe is that is wasn’t based on a combination of a bunch of different flours (like so many gluten-free baked goods). Rather, it was based on Pamela’s Baking & Pancake Mix which I already have stocked in my pantry. Although I don’t have a deep fat fryer, and have never made donuts before, they actually turned out relatively well (especially considering that I started making them about 30-minutes before we had to leave for school). They may not have been the prettiest looking donuts but they tasted great! The good news is that my daughter wanted donut holes so that made the shaping of the donuts that much easier. Plus, we had a lot of fun making them together and I let her be in charge of the decorating.
I’ll probably try making these again so that I can perfect them and I’m also interested in trying some different glazes, frostings, and toppings. It’s good to know that making great tasting gluten-free donuts can be so easy.
If you end up trying this recipe and have some success, please leave a comment to share your secrets!
I've Been Diagnosed With Celiac Disease
Posted: June 17, 2010 Filed under: Living With Celiac Disease 3 Comments »
I was officially diagnosed with Celiac Disease in March. After my doctor told me that my blood test was off the charts and he was pretty much 100% positive that I had Celiac, he proceeded to schedule the EGD so they could confirm the diagnosis with a biopsy of my small intestine. Following the procedure he shared some pictures of my intestine and compared them to pictures of a “normal” intestine. It was pretty evident–I had Celiac Disease. The labs came back a week later to confirm.
I wish my diagnosis was as simple as it sounds in the paragraph above. The reality is that my diagnosis was much more involved. I like to think that it started with my first visit to the GI specialist back in 1995. If that’s the case, it took me fifteen years to receive my proper diagnosis of Celiac Disease. I shouldn’t feel too badly though. I’ve heard that on average it takes a U.S. adult twelve years to be diagnosed with Celiac Disease.
Why is this the case? Why is it estimated that 97% of Americans that suffer from Celiac Disease don’t know it yet? How can a disease that affects 1 out of 133 people in America receive so little attention and have such little awareness? Sure, things are getting better. The month of May was Celiac awareness month, there are more and more products on the shelves identified as gluten-free, and restaurants and grocery stores are making it easier to find food that meet the needs of people with Celiac Disease and Gluten Intolerance. However, I still think more needs to be done to raise the awareness in both the medical community as well as the general public. Of course, most people recently diagnosed with Celiac Disease have to start with raising awareness within their own families as it’s a lifestyle adjustment that impacts many more than just the person diagnosed.
If you are reading this and you have Celiac Disease or know someone that does, will you please leave a comment and share your story? I’m also interested in knowing your ideas for what can be done to raise awareness for Celiac Disease.
