The Gluten Free Myth: most newly-diagnosed celiacs are scrawny and underweight. The Reality: 39% are overweight. 30% of newly-diagnosed celiacs are obese.

Determining which people should be diagnosed is a very challenging task, so I will not attempt to cover it in a single article. I should point out that it is very difficult (some would call it impossible) to get an accurate diagnosis of celiac disease when a person is already following the gluten free diet.

The information and inspiration in these five books will enable people to thrive gluten free. I recommend that you read these five very brief reviews and then make your choices by clicking one of the buttons that follow the article. The color that follows each title will make your choice even easier.

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Ancient Greeks suffered from Celiac disease, but researchers did not connect the problem to wheat gluten until the early the last years of World War 2. Before that, a number of different strategies were tried. Here is a video report by one of the “banana babies“, the celiacs who diagnosed in the early 1930′s. (FYI: This is part of a long and technical video about many aspects of celiac disease. You will only need the watch the first 15 minutes here a short speech by a ‘banama baby’.

If you want to learn more about the banana babies, read this account about a person who was diagnosed in the early thirties.

Next Friday, I’ll write about the first celiac disease patients who were diagnosed gluten free in ancient Greece more that 2500 years ago. The following week, I’ll write about the modern approach to celiac disease and what came to be known as ‘the gluten free diet’.

I first heard the terms ‘gluten free’ and ‘celiac disease’ on August 2nd 1999, a date that I will never forget for many reasons. I didn’t know what on earth the doctor was talking about and really got scared when I realized that he was talking about me and was telling me things that would change my life.

Things are much better in the decade since my diagnosis — we are no longer babbling words that our listeners have never heard before — but in any case, the diagnosis of celiac disease can be pretty upsetting. Here are some videos that a newly-diagnosed celiac might find helpful and informative.

This video is a beautifully simple explanation of celiac disease done by a young lady who is obviously speaking about herself and eager to tell others about it her experiences.

Here is an interview with Dr. Peter Green, a recognized authority on celiac disease, giving basic information.

Finally, here is a serious and academic presentation on celiac disease and related issues by three scholars. I lasts 88 minutes, is totally different from what we normally see on You-Tube, but is certainly worth watching.

Non-celiacs who care for (and care about) a person who lives gluten free have a unique set of challenges. Here are a few ideas that might be helpful. I am on focusing on adults who live gluten free in this article. Parents or caregivers responsible for children who live gluten free have a somewhat different set of concerns. I’ll deal with that in another article.

Step # 1: Accept the hard realities of the situation . Read this article written by a woman responsible for providing gluten free food for her celiac husband and making sure that he stays on the diet. Read the comments given by persons who responded to the article. There is much frustration! Dealing with Celiac disease is difficult — for the patient and for those who love and care for him.

Here is another article worth reading. It deals with the particular frustrations of the asymptomatic celiac — a person who has been medically diagnosed with celiac disease but exhibits no or very mild symptoms.

Step #2: Learn along with your celiac “charge”.

♦ You’ll need lots of information!!!! There are solutuons to most of the objections included in the first letters and comments that you read.

♦ Learn along with your celiac “charge”. Learning together can be a great bonding experience. Watch this ninety minute video stopping periodically to share what is being said. It is quite likely that your celiac will learn as much as you do.

Published 7/23/10

“I understand that there is no cure, but is there anything that will give relief for the pain [caused by ingesting gluten]?” I was recently challenged by an e-mail asking this question.

I have no adequate answer to this important question. My personal policy is to be extremely careful at home and reasonably careful when I am away from home and therefore have less control over the situation. I think this is a good idea, but it means that when I am “glutened” I am in a situation where about all I can do is seek privacy and wait for the effects to wear off. After ten years living gluten free, I know that the discomfort is only temporary. That realization helps!

What are your thoughts on this important question? I’ll publish your ideas and/or forward them to the person who asked this important question. I won’t share names or personal information. Please leave a comment at the end of this article (if your computer allows you to do so) or e-mail me at gfceliac@gmail.com.

“Celiac Disease has become much more common in the last fifty years, and we don’t know why.” Researchers from the Mayo Clinic concluded this by studying blood sample collected by the military during the years 1948 and 1954 and comparing them to blood samples collected recently. (Keep in mind that they were studying physical evidence of celiac disease not records of how much celiac disease was actually diagnosed.)

“Something has changed in our environment to make celiac disease much more common,” but the researchers did not speculate on what that change might be. I’d love the opportunity to publish your thoughts on that subject. Please e-mail me at gfceliac@gmail.com.

This information is from a press release from the Mayo Clinic dated 07/01/09. Please click here for a more detailed summary of the article.

Published 09/15/09

What is Celiac Disease? I wish I had a dollar for every time I have tried to answer that question. Here is a seven minute video that may be helpful in these situation. The interviewer is Heidi Collins, a diagnosed celiac and parent of a celic child, a CNN anchor person, and spokesperson for The National Foundation for Celiac Awareness.

Genetic testing is an option for persons concerned about celiac disease and gluten free living. The key thing to keep in mind that these tests DO NOT diagnose celic disease or gluten intolerance. Instead, it divides people into two groups: (1) people whose genetic makeup makes it possible for them to contract celiac disease, and (2) people who need have no need to be concerned about celiac disease.

Who needs a genetic test? Parents or children of diagnosed celiacs. These folks are at high risk for celiac disease and without the genetic test will have to be screened periodically for celiac disease. Of course, some of the people tested will still need the periodic blood tests. 

What are the drawbacks? Money is the major obstacle. People considering genetic tests should ascertain that they wil be covered by insurance. There is a possibility of confusion here. Remeber: if a person carries the offending genes, it is possible for him or her to contract celiac disease it does not mean that the individual already has the disease or is certain to acquire it. If tests reveal that these genes, it means that the individual does not have celiac disease and is in no danger from it.

Need more information? Read this leaflet published by R.O.C.K. (Raising our Celiac Kids) and/or this article published by The University of Chicago. The most detailed explanation I know of is included in a video from the medical school of the University of San Diego titled "Celiac Disease and Gluten Sensitivity". This video lasts 88 minutes and contains a great deal of excellent information on a wide variety of subjects. If you are only interested in the expanation of genetic testing, skip forward to minute #19 of the video.  (Note: Because of the length of the video. it will load into your computer very slowly. Be patient. It really is there.)

Many lives have been changed for the better by strict adherance to the guilty. These people may or may not have celiac disease. In order to have a clinical diagnosis, they would need to reintroudce gluten into their diet for a significant amount of time and then have blood test and a possible biopsy. This process is called a "gluten challenge".

Is it worth the effort and the pain? That was the most-often discussed topic on this site during 2008. If you would like to read some of those letters, click  on the CATEGORIES button at the top of the page. Choose CELIAC DISEASE and then  CELIC DIAGNOSIS for links to articles dealing with that subject.

Judging from the mail I have in front of me at the moment, the necessity for a clinical diagnosis of celikac disease will be an equally hot topic in 2009. Before publishing your responses, I would like to ask a few questions. I’ll publish your answers as well:

I would like to hear from you if you actually undergone a "celiac challenge" by reintroducing gluten into your gluten free diet. Why did you decide to do this? What were the results? Is your current lifestyle significantly better or worse because of your "challenge"? What advice would you give to a person considering a "gluten challenge"?

I’d like to hear from you if you have had problems caused by your lack of a clinical diagnosis of celiac disease. We are all very curious; so are our friends and family members. Everyone is happier when their problem has an official label.Im interested in specific problems with doctors, hospitals, insurance companies, etc.

Please get in touch with me either by e-mailing me at gfceliac@gmail.com or by leaving a comment at the end of this or any other article.

Published 12/20/08

Is a formal clinical diagnosis of celiac disease essential or even helpful? This question has raised a flurry of excitement on this blog, and this is the fourth time I have written about it this month. You may wish to read or reread my previous articles dated October 12, October 13, and October 17. This series of articles will continue as long as you keep sending e-mails and comments..  Here are excerpts from three of the comments I have received.. The bold print represents my idea of what phrases were most important and I have added a comment at the end of each submission

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“Thank you so much for posting this topic and part of my original comment regarding diagnosis of celiac. I keep checking each day for new comments. I’ve read each one with interest and they all have been helpful, if only to reinforce the fact that I know I’m not the only one with this problem of believing I have celiac without the benefit of a positive lab test/biopsy.”

The Gluten Free Guy’s Comment: No, you are definitely not the only one. I have no idea what percentage of the people on the gluten free diet are diagnosed celiacs. I hope that someone who reads this article can answer that question.

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DH’s biopsy & colonscopy is next week. The last few days of his 3 month gluten challenge have been tough, with the big "D" and breaking out in hives. Before that, he only had a "nervous stomach" and a lot of belching. He’s pushing 50, and an official diagnosis seems like a good thing. A baseline look at the state of his intestines seems like a good thing. Knowing if his gluten intolerance does or does not have an auto-immune component is a very good thing.

The tests are imperfect, and he’ll eat GFCG regardless of the outcome; but the docs will take him more seriously now.

The Gluten Free Guy’s Comment:  Exactly why does the diagnosis “seem like a good thing”. After all, DH intends to maintain his gluten free/casein free lifestyle regardless of the outcome.

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the question raised is definitly important to be discussed, i was diagnosed with celiac after quite much of confusion it has been a year now and sometimes i still think if i really have it. i have never been through a biopsy i had blood tests IGA was negatve and IGG positive this confusing result could not let my doctor to reach a conclusion i still kept on eating gluten which made me a real sick after another year, the second test i repeated gave both positive. after a complete gluten free diet i feel better now, but sometimes still have abdominal pains, some of the doctors says "clinical response of the patient is the most important it would be better to go through a biopsy" but after a complete gluten free diet for almost a year now i have to start gluten again for a correct biopsy result,, once again its the same question is it worth it?

The Gluten Free Guy Comments: IS IT WORTH IT? You are asking the right question. I wonder how other visitors to this blog will respond.

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It’s my turn to speak on this question rather than merely trying to moderate this discussion. Right now I have only a vague idea of what I will say. I do my best work when I set a deadline for myself, so I promise to publish this article one week from today, October 31, 2008. It will certainly be an interesting way to observe Halloween.

Published 10/24/08

Yesterday I asked my visitors to tell me how important a clinical diagnosis of celiac disease was to them. This morning my e-mail contained several responses and I haven’t even looked at the comments on my blog. Obviously, I will be writing many articles on this subject. I tried to summarize these first responses and then gave up completely — everything these people had to say was essential so I have reproduced there letters with only a very few minor omissions. Before you read the letters, here are some thoughts:

You will notice phrases in bold print in these letters. The emphasis is mine. I hope it reflects the intention of the writers.

Secondly, I will never publish names or e-mail addresses without specific permission. If you respond directly to my blog, you will be asked to give your address so that I can communicate with you. The address is not published automatically and I will never release it without permission.

Finally, the question of diagnosis is of vital concern! I’ll keep publishing your responses as long as you continue to submit them. Send me an e-mail at gfceliac@gmail.com or leave a comment at the end of this or any article.

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“I am newly diagnosed as of 2 months ago and I do have an opinion regarding diagnosis. About 4 ½ years ago I finished eating a fried chicken sandwich at Wendy’s and within 20 minutes I had the worst diarrhea of my life. I was sure that I had the flu but after several months of not being able to keep food in my system I opted to see my doctor.  The best description I could give him was that “my digestive system had turned into a slip-n-slide”.  I had every test imaginable (including celiac) and an ultrasound to make sure I still had my appendix—like I wouldn’t know if I had an appendectomy! The last test was the colonoscopy.  The GI doctor entered my recovery room and told me and my husband that nothing was found and that “as our bodies get older sometimes they just get tired of digesting food”.  I was 40.  As a last resort I had all my test results sent to a new GI and he prescribed a pill I was to take 20 minutes before each meal. It certainly helped but not a great deal.

“Fast forward 4+ years and I find an integrated medicine facility located 10 miles from my home—I was looking for non-prescription help for my daughter’s very mild case of ADD. Before a patient’s first visit with this doctor you have to attend a class regarding Omega 3’s and Omega 6’s.  My husband and I both attended and I scheduled myself an appt.  The doctor took one look at me and identified several deficiencies immediately and suspected a malabsorption problem due to CD. I told him that I had already been tested for CD and it was negative to which he responded that the correct CD test was not done. My blood was sent for testing using the NIH standard and the results came back as he suspected—I was an off the charts celiac!!

“I started the GF diet the first week of August and I cannot even remember feeling so good!  It was a total fluke that I found this doctor—I would have never, ever, requested a more in-depth test for celiac.  So my opinion is that if you even think you might have CD get tested. If you are going GF without the test and are feeling better then commit to it and don’t look back. It is true that you will get a false reading if you have gone gluten free before the test.”

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“I will skip the details of reaching a diagnosis – long and frustrating, especially as our son is Chinese, and no one wanted to believe he could have celiac.  Finally, upon testing, his blood work was elevated – Gliadin IgG was 10x normal.  The peds GI (whom I assume has decent knowledge of celiac as he had started a local chapter of ROCK), said there are often false positives, but not when labs are that high.  We had the biopsy, and that day (prior to results) started our son on a GF diet.  His GI symptoms were gone in three days.  Five days later, the biopsy results came in – no celiac.  Some adults with celiac have said, “don’t believe the biopsy – they may have missed it.”.  Some books say maybe he just didn’t have enough damage done yet.  So, what are we to do?  Even slight amounts of gluten are noted with return of symptoms.  We have been GF 8 months now, but health care providers brush it off, saying, “But he doesn’t have celiac”.  The GI office didn’t even follow up with us after the biopsy was negative despite labs and symptom resolution with a GF diet.  To anyone who needs to know (nursery workers, etc.) and if they ask if he has celiac, I just say yes.  I hope he doesn’t, but maybe he was lucky and changes have been made before extensive damage???  Sure would be cheaper (and easier) to not be GF, but I can’t deny the symptoms despite what the biopsy said.  So, we’d love to go by diagnosis, but can’t.  Wish we could.”

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“I think a confirmed medical diagnosis is 100% necessary.  Without it, you are at risk if you must ever be hospitalized – especially if you are not able to advocate for yourself (i.e., unconcious, badly injured) at the time of your admission; you’ll never get a meal you can eat.  You are also at higher risk with your own insurance company – if you have a diagnosis, you may be able to fight with them to get them to cover more-expensive brand-name, or otherwise gluten-free, drugs.  If you have a diagnosis, you can claim the difference between regular and gluten-free items as medical expenses on your tax return …but don’t mess with the IRS without a diagnosis!  If you travel, and you don’t have a diagnosis, DON’T get sick or injured; if you run into a skeptical or hostile medical care provider, you have no recourse.

“It’s possible to run into a medical provider who is unfriendly to celiacs even at home.   Once when my GP was out, I had to see one of her practice’s partners.  The man was actually hostile to me in questioning whether or not I was “really” celiac.  I was relieved to be in a position to suggest that he call my gastroenterologist, who is the head of the Digestive Diseases Division at Johns Hopkins University.  I could not have safely done so had I not had a  confirmed medical diagnosis.

“Your blog post on this subject mentions publishing comments – please feel free to publish mine, but if you do so, please withold my email address.  I did not respond in the comments section of your blog because the form requests an email address, and I was not certain that my address would not be published along with my comment.”

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Published 10/13/08

Celiac disease can be diagnosed with a simple blood test. Most celiacs are totally unaware of their problem; the first time I heard the word "celiac" they were talking about me! This brief "public service announcement" does a great job of making this point absolutely clear. The speaker is Heidi Collins, a CNN Anchorwoman Heidi Collins, a diagnosed celiac, and the parent of a celiac child.

If you have not yet been diagnosed, listen to this information carefully. If a friend needs this information, please share it! 

7/20/07   Listing the symptoms of celiac disease is not a simple and straight-forward task: However:

  “There are 256 symptoms and related conditions that indicate that a patient may have celiac disease.” Click here to read more about this.

  The Celiac Sprue Association explains the problem this way: “The symptoms of celiac disease vary so widely among patients that there is no such thing as a typical celiac.”

   The National Institute of Health speaks for the federal  government in stating that “Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children. Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.”

  Webmd.com is a little more specific: “…the signs and symptoms of celiac disease vary among individuals, ranging from no symptoms, few or mild signs and symptoms, to many or severe signs and symptoms. There are two categories of signs and symptoms: 1) signs and symptoms due to malabsorption, and 2) signs and symptoms due to malnutrition including vitamin and mineral deficiencies.”

  The article by the Celiac Sprue Association does a good job of wrapping up this subject: “Celiac disease is one of the great mimics in …medicine”.

What do we do, particularly if we suspect that a friend or family may have celiac disease? I have two suggestions:

    read the articles mentioned above to help you understand the problem of symptoms and diagnosis; they are summaries and I don’t want to attempt to summarize summaries of a topic as important and complicated as this.

   focus on the first of the articles that I mentioned. It was published by the WNYGFDSG (otherwise known as the Western New York Gluten Free Diet Support Group). It is written with the idea that “ordinary” people will digest this information and either share it with their physicians or use this article as “homework” to prepare them to meet with their doctors.

  Two personal notes  illustrate why being ready for your doctor for any celiac related concerns:

my wife was recently hospitalized and somehow this website came up while talking to the dietician. The dietician asked for my business card — “we’ve had quite a few calls for gluten free meals lately’ . Apparently, the dietician was aware of the sudden increase in the number of people who have gone gluten free during the past few years and was anxious to help. But she had no training in the area and didn’t even know the name of a gluten free web site.

We recently moved to Portland and needed to find a new family practice doctor. She looked at the health history I just completed and remarked that she heard about celiac disease but that I was the first celiac she had every met. She seems like an excellent doctor, but I definitely need to be well prepared if I need to bring any celiac-related concerns to her attention.

6/22/07 Here are links to several articles describing the diagnosis of celiac disease. These  are summaries, and attempting to summarize a summary is always a bit risky. But I’ll give a brief introduction to each article:

  Start by reading “Ten Facts About Celiac Disease”, published by the National Foundation for Celiac Awareness. Celiac disease is very common and is often mis-diagnosed. The only treatment is a life-long commitment to the gluten free diet. The diet is much to complicated and expensive to be entered into lightly. It may do just enough good to mask important symptoms in people who not actually celiac.

  This article from the Celiac Sprue Association outlines the three step process that leads to a celiac diagnosis. The article stresses that the diagnosis must be completed before the patient begins a gluten free diet. Why? I’ll use myself as an example. If I went through the testing procedures, they would reveal that I have no trouble processing gluten. And, of course, I don’t. I have solved the problem by eliminating gluten from my diet. Confirming my celiac disease at this point would be for me to make myself sick by consuming gluten for several months.

  But, why do we need a formal diagnosis? Why go to the pain and expense involved in a biopsy? This article answers these questions simply and without medical jargon. The article published by webMD.com goes into more detail. I know many people who follow the gluten free diet simply because it improves thewebMD quality of their lives. There is a lot to be said for that point of view, but it is important to consider all the information that is available.

  Finally, I suggest that your read this article by the National Digestive Diseases Information Center, an agency of the federal government. It’s worth the effort to wade through it since it contains a vast amount of information. Click here to study the Easy-to-Read version of the article.

  Is there any way I can help you? I remember the panicky days just before and after my celiac diagnosis in August, 1999. E-mail me at gfceliac@gmail.com. I have no medical credentials, but I have “been there and done that”.

Here’s an interview that was broadcast on The View and made available to us on You Tube. Every newly diagnosed celiac should see this video to reassure them that our situation is being recognized by the media and that acceptable foods are readily available. It’s also a great way for all of us to pass information to our friends who need to have "just enough information". There is some information about testing for celiac disease. We all know people who should "take the hint" and get themselves tested. This is a great way to plant that idea in their minds.The small SHARE button at the bottom of the image actually works. Use it to e-mail this video clip to someone who needs to see it.

The physician beining interviewed is Dr. Peter Green, author of Celiac Disease: a Hidden Epidemic. The book cover is pictured at the bottom of the post. Click on it if you might be interested in purchasing this valuable resource.

This is the second video clip that I have posted on this site. Click here to watch a similar video clip that originally aired on CNN.

I first heard the term "Celiac Disease" in 1999 and they were talking about me! Since then, I have tried to explain my situation to altogether-too-many people who are totally unaware of Celiac Disease and its impact on my life. Here is an interview with CNN Anchor Heidi Collins; she has "Celiac Disease" and is the mother of a five-year-old Celiac.

Click on the arrow in the bottom left corner of the image to see the video. If you know someone who needs to see this video, click on this link and follow the directions on the right side of the page. My thanks to Google Videos and CNN for making this interview available to us.

 I’ve have posted another video clip similar to this one. It was presented on ABC’s The View. Click on the title to move to that post. Both clips feature an interview with Dr. Peter Green, author of Celiac Disease:A Hidden Epidemic.

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