Celiac Disease

Official Website of Celiac-Disease.com

You are here: Home / Archives for Celiac Disease / Diagnosis / Symptoms

Diagnosis / Symptoms

Celiac Disease – Annual Screening?

Last Updated on by the Celiac-Disease.com Staff Leave a Comment

Once you have been diagnosed with Celiac Disease, the treatment is a life-long adherence to the gluten-free diet. There are currently no other treatments. No medications. Nothing. Some doctors believe in yearly screenings to see if the patient is complying with the diet, while others feel that such screening isn’t necessary. There are a couple of different reasons for yearly blood tests that I will discuss below.

First, a child who has been diagnosed with Celiac Disease may feel like he/she does not need to adhere to the diet.  They may cheat when at school or when out with friends. This is more likely in older children/teens who are on their own more than kids under 12. Routine yearly (or even quarterly) testing can alert the parents and doctor to any potential problems. We are having quarterly testing done with my son (who will be 16 in April). While my son follows the diet for the most part, he has admitted to eating a regular Pop-Tart on a dare and he isn’t necessarily as cautious as he could be when eating out.

Secondly, an annual screening may be performed to ensure that no hidden gluten is being consumed.  Some people have a problem following the diet for whatever reason.  There may be cross-contamination issues at home, the individual may travel a lot for work and have to depend on restaurants to safely feed him/her, or they may be new to the diet and learning what is safe & what isn’t.  This is especially important for those who are asymptomatic.  There are many people out there who don’t get sick when they consume gluten or they may not get sick when they consume trace amounts.  For this reason, annual screening can help the patient & the doctor gets a clearer picture of what is going on.

To those who have been diagnosed with Celiac Disease: Do you get your blood tested yearly?  Weigh in below in our poll and feel free to discuss in the comments section.

Surprising Ways Celiac Disease Can Manifest Itself

Last Updated on by the Celiac-Disease.com Staff 5 Comments

People often tell me stories of how they suffered for years and I used to think about how fortunate I was that my anemia diagnosis led to my celiac diagnosis ten months later. As it turned out, my road to a diagnosis was much more involved than that. The year before I found out about the anemia, I was diagnosed with Shingles. The problem was that I was not in the age group of people who have that condition. Therefore it was misdiagnosed as a muscle spasm and then as hives from the spasm medication. By the time my husband drove me to the third doctor’s visit (in ten days), someone finally figured out I had Shingles. Since the condition requires treatment within three days, mine had already progressed to something called postherpetic neuralgia.

Several years ago David Letterman was out of work for weeks for a case of Shingles. It was later reported that he had PostherpeticNeuralgia. The thing about this condition that many people don’t know is that it is so painful you don’t think you’ll live. The pain is so severe that you just assume you are not long for this world. My case is no different than the average person with the condition. I could not sleep, eat or even think during the episode. The pain overtakes your life every second of every day in ways no one who hasn’t experienced it can imagine. Narcotic drugs do not begin to touch the pain of this type of pain. Luckily for me, a dear friend of mine suggested I see a neurologist when the doctors threw several narcotics at me and said that’s all they could do for me. They might as well been giving me candy. The specialist I was referred to specialized in treating people with postherpeticneuralgia. He gave me a strong anti seizure medication called Neuronton, which you step up on until you get less than pleasant side effects. That is when you know you’ve reached the limit of this medication for your body. Eventually, if you’re lucky, you become pain free and begin the process of stepping down off the medication.

By the end of the first week on the medication, I felt that I would live. Dateline NBC did a story the very night that I finally started coming back to life, about how the maker of the drug lost the biggest class action lawsuit against a drug company. The suit was founded around the illegal practice of off label use of the medication. Some people with a bi-polar disorder that were given the medication committed suicide. My husband told me to stop taking the meds and I told him if I didn’t make it to get in on the lawsuit.

After my Shingles episode was finally over, after about four months, I assumed it was a fluke that I got a condition that only people 50 and over got. It turns out that people under 50 with auto-immune conditions also get Shingles, which I remember reading and not thinking much about during the episode. When I finally had my celiac diagnosis, and learned that is in fact, an auto-immune condition, the pieces all fell into place. There is now a vaccine for Shingles that is for people 60 and older.

If you ever know anyone that is diagnosed with Shingles who is under 50, please let them know the chance they have an auto-immune condition of some kind is extremely high. They might not have celiac and there is no study showing a connection between the two conditions. In hindsight, had I taken what my neurologist said to me more seriously, I might have been diagnosed with celiac earlier. I specifically inquired about the possibility of me having an auto-immune condition. He said that we’d only worry about that if I did not respond to the meds. Since I responded well to them, it was never discussed again.

Even though I really had a short road to my celiac diagnosis, and feel very fortunate about that, for over four months during my plight, I was not a fully functioning human being. In fact, I was like a living zombie. It simply should not be so hard to get tested for and diagnosed with celiac disease in this country. The NIH started a campaign to educate doctors in the U.S. about celiac in 2006. Over three and a half years later, it seems that their big campaign consisted of publishing some information about celiac disease in a gastroenterologist journal. The problem with that is that the front line of defense should be primary care doctors. People with celiac who have depression as a symptom – or migraines – are not going to be sent to consult with a gastroenterologist. Dentists need to be educated about celiac disease as well. The goal of the NIH program was to get an additional 500,000 people in the U.S. diagnosed with celiac disease in five years. If the agency plans to meet that goal, they better step up their game now.

Can Celiac Disease be Misdiagnosed as IBS?

Last Updated on by the Celiac-Disease.com Staff

YES! Not surprisingly, several readers recently sent in this question. This is likely due to the fact that Dr. Oz’s popular TV show aired a show (or part of one) about celiac disease last week. Though there were some glitches in the celiac segment, most of the information shared was factual. All of the information shared by Dr. Peter Green of the Celiac Disease Center at Columbia University was completely accurate, of course. Dr. Green’s book “Celiac Disease: A Hidden Epidemic” should be required reading for every doctor in this country.

When Dr. Oz’s guest, Elisabeth Hasselbeck, mentioned that for years she’d been diagnosed with IBS many years prior to her finding out she actually had celiac disease instead, internet Google searches about celiac lit up the world wide web – at least in the U.S. The day after the show aired Google reported an increase of over 360% for the term celiac disease. That is fantastic news! Think of the millions of Americans suffering from IBS who are getting very little, if any, relief from their IBS medications. Hopefully, anyone who fits that profile and missed Dr. Oz’s celiac show has a friend that saw it and will tell them about it.

Also of note on the show, was an important comment Dr. Green made about fertility issues. He mentioned that many times he sees celiac patients that are about to undergo fertility treatments but he suggests they wait to see if they are able to get pregnant after starting the gluten-free diet. Dr. Green said that in some cases, the person is pregnant in a year or so. Do you know how much money fertility treatments cost? Do you know how many fertility treatment centers routinely test patients for celiac? Less than 10% of them do even though in Dr. Green’s book, he explains that roughly 10% of people who have fertility issues might have problems with celiac or gluten intolerance.

The list of celiac symptoms is long (read the Celiac-Disease.com post about them here) but possibly two of the most overlooked health problems that can be directly related to celiac or gluten intolerance are IBS and infertility. If you think you might have issues with gluten, take the symptoms checklist test on the National Foundation for Celiac Awareness website. It’s free and only takes a few minutes to complete.

Due to the publicity about celiac that Dr. Oz’s showed generated last week, this is a great time to be a Gastroenterologist in the U.S. For those of us who’ve been around the gluten-free block so to speak, keep in mind that the more people that follow the gluten-free diet, the more food options we’ll have. As with anything – even big-screen TVs – more product options bring lower prices overall. The gluten-free diet should not be viewed as either a weight loss diet or something to undertake lightly. But for the 95% or so undiagnosed people with celiac, a gluten-free diet is most certainly called for.

Have a question about the gluten-free diet that we haven’t covered yet?  You can now submit your questions here! (Note: All medical questions should be directed to your physician)

Is there a Link between Celiac Disease and Infertility?

Last Updated on by the Celiac-Disease.com Staff

We are addressing this question only because so many of you want to know and there is plenty of credible information that can be referenced on this topic. Many celiac medical experts have studied and weighed in on the issue.

According to most celiac experts, the answer to this question is YES. If you ask a fertility doctor about it, you’re likely to be told no – if the person you’re speaking to has even heard of the condition. In this country, most fertility clinics do not test their patients for celiac disease. Fertility treatments cost thousands of dollars, and most couples have several treatments. One might conclude that it is not in the best interest of fertility clinics to test their patients for celiac disease, which is treated only with a diet. But in fairness to fertility “experts”, it should be noted that most of them were never educated about celiac in medical school. Doctors can’t find something they are not looking for, of course.

Though there is no guarantee that following a gluten-free diet will result in a pregnancy, some people report having difficulty getting pregnant before they find out they have celiac. Some of them also report that following the gluten-free diet faithfully allowed them to get pregnant, so it can and does happen. This is not to suggest you – or anyone you know who is having problems getting pregnant – start the gluten-free diet in hopes of getting pregnant. It is to say that celiac is certainly something to rule out when speaking of unexplained infertility.

There are many reasons for infertility, including untreated celiac disease.  Even so, very few fertility doctors are educated about celiac and even fewer fertility clinics routinely test their patients for celiac disease. Is this shocking?  Absolutely.  The more you find out about celiac disease and gluten intolerance, the more you’ll find out that U.S. doctors are years behind many other countries on this issue. Celiac specialists are aware of the most up-to-date information on these conditions here, but the average U.S. doctor does not know much, if anything, about celiac or gluten intolerance.

Both men and women can be affected by infertility and celiac. Therefore, it only takes one partner to have celiac and not know it, to have a problem with fertility. For that reason, It’s a good idea to test both parties when looking for celiac as a culprit in unexplained fertility issues.

Dr.  Stefano Guandalini, M.D. of  The University of Chicago Celiac Center wrote a very interesting article about this topic that is worth reading if you or someone you know is interested in this issue. Studies indicate that on average 6% of women who have unexplained fertility might have celiac which might keep them from getting pregnant.  The National Foundation for Celiac Awareness has other interesting facts posted about this issue.

In his book Celiac Disease: A Hidden Epidemic, Dr. Peter Green of the Celiac Disease Center at Columbia University, explains that patients with unexplained infertility issues in many parts of Europe and South America are routinely tested for celiac disease. Dr. Green goes on to say that it’s an exception when patients with this problem in the U.S. are screened for celiac.

Can you imagine that something as simple and inexpensive (compared to fertility treatments) as the gluten-free diet might be the simple answer for some struggling couples to be able to have a child? The situation is truly pathetic.

Have a question about the gluten-free diet which we haven’t covered yet?  You can now submit your questions here! (Note: All medical questions should be directed to your physician)

Lesser Forms of Celiac Disease May Increase Risk of Death

Last Updated on by the Celiac-Disease.com Staff 4 Comments

If you’ve ever attended a large celiac support group meeting before or attended any type of event which has a large collection of people who suffer from celiac disease, you may have compared notes and noticed that there seem to be a number of varying types of the disease out there which result in a variety of symptoms. Though they are all forms of celiac disease, some are definitely more severe than others.

Historically, most testing has focused on the most severe forms of celiac, but recently WebMD covered a study that showed patients with less severe forms of celiac disease may be at a higher risk of death.

The researchers compared all patients with a comparison group from the general population and followed them for a median of about seven to nine years (half were followed longer, half less). Among those with celiac disease, there were 3,049 deaths; among those with inflammation, 2,967 died and among the latent group, 183 died.

The increased risk of death, the researchers found, differed by group:

  • Those with inflammation had a 72% increased risk of death.
  • Those with celiac disease had a 39% increased risk of death.
  • Those with latent disease had a 35% increased risk of death.

But Ludvigsson puts the finding in perspective. The most important finding, he says, is the relatively low overall risk of death, even though it is increased. It translates, he says, “into very few actual deaths.”

It is important to note that the researchers also found that people who are diagnosed before age 20 had nearly twice the risk of death.  However, Ludvigsson put that into perspective by stating that kids are at increased risk of mortality.  It is also believed that the higher risk in those with less severe disease may be because of untreated inflammation, as those patients may not be told to follow a gluten-free diet.