the patient celiac

Yes, it is "Safe" to Raise Non Celiac Kids Gluten Free

0 comments January 31, 2013

I've realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason  that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once! None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some "gluten sensitivity" in my deceased dad's family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor.  He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!

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What your doctor may possibly be reading about Celiac Disease

0 comments January 25, 2013

medicine_and_Stethoscope

I was at a work function recently and I met a new physician. She noticed that I was not eating any of the food from the dinner buffet and she asked me why. I told her that I have Celiac Disease and she asked me, “What is Celiac Disease?” It took me a minute to respond because I was so taken aback by the question. When I responded that I cannot eat gluten, she asked me, "What foods is gluten found in?"  I went back to the basics in my explanation.

This encounter came about a month or two after I had another doctor ask me questions about my “gluten allergy” and whether or not I ever “cheat” on my diet. He told me that one of his relatives has Celiac Disease, but cheats all of the time.

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So it appears that Celiacs are not slowly dying after all...

0 comments January 24, 2013

I recently came across the question, “Are Celiacs really slowly dying?” on one of the Celiac Disease forums. My first thought was, “Aren’t we all slowly dying?” Then, as I read, I realized that the person who posted it was concerned about research showing that many adult Celiacs do not have complete healing of their intestinal mucosa (tissue) despite being on the gluten free diet. This is called “persistent villous atrophy” in the medical world.

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Eosinophilic Esophagitis and Celiac Disease

0 comments January 21, 2013

Eosinophilic Esophagitis, also known as “EE,” is gastrointestinal disorder that, like Celiac Disease, seems to be increasing in frequency of diagnosis. I first heard of EE disease when I was in my pediatric residency.  I worked with a Pediatric GI specialist who seemed to diagnose all of his infant patients with gastroesophageal reflux (GERD) with EE. When I learned about EE I had no idea that my dear husband had the very same problem!

My husband was diagnosed with EE in 2009 after having several episodes of choking and feeling like he had food stuck in his throat. In usual wife fashion I recommended over and over again (looking back, perhaps I nagged a little bit) that he get evaluated for his swallowing problems. He finally saw a GI doc following an ED visit for a choking episode, and had an upper endoscopy with biopsy performed that showed numerous eosinophils in his esophagus.

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Celiac Disease and Pregnancy

0 comments January 18, 2013

Although I am pretty sure that I had Celiac Disease for more than two decades before my diagnosis, I was not diagnosed until after my 3rd child was born. Looking back, my diet during my first 3 pregnancies was a gluten-filled nightmare. I am actually glad that I have no idea how sky-high my celiac antibodies probably were while I was pregnant with my oldest kids. There has not been a ton of research on celiac disease and pregnancy, but based on the work that has been done, I have learned that celiac disease has effects on fertility, miscarriage rates, fetal growth, and the ability to carry a pregnancy to term.

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My First Trip to a Gastroenterologist

0 comments January 12, 2013

I have been wanting to get this story off of my chest for a while! Alternative titles ideas for this post included, "Why I did not become a Gastroenterologist," and, for my M.D. friends, "Some females with chronic abdominal pain may actually be suffering from gluten intolerance." I saw a gastroenterologist for the first time approximately 16 years ago. It was the summer between my freshman and sophomore year of college. It is etched in my memory because it was such a horrible experience. I suffered from a mysterious mono-like illness when I was 18 that started shortly after an episode of food poisoning. Soon after, I began to have episodes of sharp, stabbing, diffuse abdominal pains accompanied by bloating and diarrhea. My symptoms seemed to always get worse in the evenings, shortly after dinnertime. I wondered why I would go from looking "not pregnant" to about 8 months pregnant within minutes. I slept with a heating pad on my abdomen most nights. I also had recurrent pharyngitis, fatigue, oral ulcers, and anemia. I also could eat anything I wanted without gaining any weight (which I admit, I thought was pretty cool at the time).

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Introducing Gluten to the Baby At-Risk for Celiac Disease

0 comments December 29, 2012

This is Claire. She is my fourth baby, my “last” baby, and one of the greatest gifts of my life. She is the first baby I've had since being diagnosed with Celiac Disease and going gluten free. Because of this, I spent a lot of time during the postpartum period obsessing/fretting/freaking out about if/when I should expose my dear baby to gluten. I felt that I needed to do everything that I could to protect her from developing celiac disease. As usual, my husband was much more laid back and calm about the whole situation!

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Celiac Disease in the December 20, 2012 New England Journal of Medicine

0 comments December 21, 2012

I am grateful to one of my partners for leaving the December 20th issue of the New England Journal of Medicine in my mailbox with a yellow sticky note stating, "Jess, Thought this might interest you." She was right, it did interest me, because it includes a review article written by my favorite celiac researcher, Dr. Fasano, from the Center for Celiac Research in Baltimore, MD (which, if you're interested, will be moving to Boston, MA in 2013).

I love this article as, from the start, it highlights the fact that celiac disease can present in patients in "atypical" ways.

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Can "Gluten-Free" Make you Skinny?

0 comments December 20, 2012

This caption caught my attention as I was skimming through a recent issue of Redbook Magazine. I was skeptical to read the article at first, as the two other health features on the same page are titled “Another Reason to Have a Drink” and “Yes, Your Undies Can Be Bad for You.” However, I kept reading and am glad that I did.
I was happy to see this article in a mainstream women’s publication for the following reasons:

  • Gluten is defined, in plain English, as a protein found in wheat, barley, and rye. This is a good thing, as I wrote last month about the general public’s lack of understanding of what gluten actually is.
  • It alludes to the fact that gluten is often hidden in “non-obvious” foods, such as soups, salad dressings, and sausages.
  • The two medical reasons to be on a gluten-free diet, celiac disease and non-celiac gluten sensitivity, are discussed.
  • Although the gluten-free diet is referred to as “the world’s biggest diet trend,” there is not a laundry list of celebs who are gluten free. This is good, because if one more person mentions to me that they’ve heard that Lady Gaga is on a gluten-free diet, I think I am going to rip all of the hairs out of my head!
My criticisms of the article are as follows:
  • As usual, celiac disease is described as an autoimmune disease affecting only the gut, despite the fact that it is associated with so many other problems, including infertility, anemia, osteoporosis, thyroid disease, and fatigue.
  • There is no mention of the huge number of those with gluten sensitivity (up to 8% of the U.S. population).
  • The concept of the importance of cutting out both gluten-containing and gluten-free processed foods is totally ignored. This is a huge pet peeve of mine, as for many, being “gluten-free” means to continue to follow the carbohydrate-heavy, overly processed, standard American diet, i.e. substituting GF bagels for regular bagels and GF frozen dinners for regular frozen dinners.
It is very important for overall health and bodily healing that those of us who have Celiac Disease start on a predominantly whole foods diet. We need to focus on buying, preparing, and eating fresh vegetables, fruits, fish, nuts, lean meats, etc. (instead of GF cookies, muffins, waffles, etc.) While I am grateful that so many GF products exist, and I do indulge occasionally, I am thankful that my diagnosis has forced me to change the entire nutritional landscape of my family. I can assure you that I have not missed being able to eat Cheezits, Lucky Charms, Doritos, or Weight Watchers frozen entrees for a moment.  
In summary, while this is not the best article out there about the gluten-free diet, it is an easy and quick read. And it does increase awareness that eating gluten-free is not a magic bullet for weight loss.
Next up, I need to keep reading to find out if my underwear is bad for me!

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What Now? Wheat Sensitivity?

0 comments December 18, 2012

I first came across the term “wheat sensitivity” in an editorial entitled, “Non-Celiac Wheat Sensitivity: Separating the Wheat from the Chat,” in the December 2012 issue of the American Journal of Gastroenterology. Thanks to a night of bad insomnia and a pretty interesting original research article by Carroccio, et al., in the same issue, I kept on reading...

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