Tag Archives: Diet

Have you ever wondered how reliable the news you see on the television really is?

Now I know first hand that the media does not always get it right and can even leave out the most important news of all.

Let me tell you how …

For the last five years, I have worked to educate people about celiac disease and gluten sensitivity. I developed a website called Glutenfreeworks.com, which has helped tens of thousands get well and stay healthy living the gluten-free lifestyle.

I also edited and published the groundbreaking work, Recognizing Celiac Disease. This medical reference, authored by Cleo Libonati, RN, BSN has set the standard for identifying symptoms and their causes.

People use Glutenfreeworks.com every day to find new gluten-free recipes, how to get diagnosed for celiac disease, which restaurants serve gluten free food in their area and where to find information on local support groups. Our symptom guide, first published in Recognizing Celiac Disease, contains over 300 signs, symptoms, associated disorders and complications. From nutritional information to in-depth reviews of gluten disorders and the gluten-free diet, Glutenfreeworks.com provides medically accurate information to help patients and health professionals alike.

Last week I was given the opportunity to talk to ABC News in Philadelphia about gluten sensitivity, the gluten-free diet and how people’s lives are being affected by gluten.

When I sat down with ABC for a 20 minute interview on gluten sensitivity we discussed the following: Read More »

Saving a life means more than just keeping a person from dying. It means helping them get well.

While practicing medicine as a registered nurse, Cleo Libonati regularly saved people’s lives. Now her book “Recognizing Celiac Disease” is doing the same for people across the country and around the world.

Here is a letter telling how one family credits the book with saving their lives…

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Dear Cleo,

I have been “sick” most of my life (I turn 40 in July) with random things, too many to list here. I have been really sick the last 10 years, but started feeling as though I was “dying by the inch” in 2004. I finally broke down and went to my primary when premature ventricular contractions were occurring every 5-10 seconds that felt as though my heart was going to jump right out of my throat. I had many other random multiple sclerosis type symptoms, but the severity of the PVC’s were what scared me the most, that is until 2006. I began to have many gastro symptoms that kept me in the bathroom several times a day with alternating elimination problems, I couldn’t keep food down, and pain in the left side of my swollen, hard, tender abdomen every time I ate. I had an EGD and colonoscopy on 2/15/07. The three days before the test were the best I had felt in 4 years. Since I worked in Oncology and was used to seeing patients doing prep for them, I put myself on clear liquids 2 days before the Go-Lytely. So, I was gluten-free without knowing it for 3 days prior to testing. Read More »

This post answers the common question – When is the best time to introduce gluten to a child’s diet when celiac disease runs in the family?

Question:

Hi John,

I was wondering if you have any information about when to introduce a baby to gluten if there is a gluten intolerance in the family. I work with babies with special needs and I am seeing a growing need for some accurate information on this. I am sure you are not surprised.

I know that some research seems to be indicating a good time to try a small amount of gluten is between 4-6 months. It seems that older research said older than 6 months. Do you have any knowledge on this subject? I am very curious but hate to share inaccurate information.

I have found some information on the internet, but wanted another opinion.

Thanks for any help you may be able to offer……
Alisa W.
Celi-ACT Support Group

Alisa Weeks
Early Interventionist
Tennessee Early Intervention System

Answer:

Hi Alisa,

Regarding when to introduce children to gluten is a difficult question. There was a study that “showed” introduction at between 4 and 6 months had some benefit, but this study was poorly performed and subsequently shown to be in error.

Really, there is no proper time to introduce gluten to prevent the development of active celiac disease. Every person is different and even siblings can exhibit different symptoms. 1st degree relatives have about an 11% chance of having celiac disease, so there is an increased chance that the child will have it. (As an aside, my sister with celiac disease has two boys, 2 1/2 and 1. She won’t let either touch it because she doesn’t want to risk it.)

If the parents of an infant or young child with familial risk to celiac disease decide to risk exposure to gluten, Cleo Libonati advises not introducing gluten before the age of three.

Why three?

Children do not reliably produce antibodies before the age of three which means antibody testing could be inconclusive and misleading if symptoms arise. Suppose the child does not develop the classic presentation of diarrhea but instead atypical symptoms that mimic other disorders. The symptoms could be dismissed altogether and not considered as presentations of celiac disease.

Harm could then occur unnoticed such as development of defective tooth enamel in unerupted permanent teeth (in the gums) or neurological disorders such as epilepsy that would show up later, with or without poor growth and development. Brain development is rapid in the first year particularly so that mental, social and behavioral skills could be adversely affected.

If celiac disease testing is performed in a young child, the following should be carefully considered before determining whether a negative result is truly negative.

• Children under the age of 2 years do not produce tissue transglutaminase (tTG) antibodies, therefore the best time to begin measuring antibodies is after children reach age 2 to 3 years.

• In clinical practice tTG lacks the reported sensitivity. Specificity is reported between 95% and 99% in adults, falling to 73% in children at the recommended cut-off value of 20 IU.3 tTG is reported to be less reliable in early stage celiac disease without villous atrophy, the elderly, children under 3 years of age, smokers and advanced celiac disease.

• In screening relatives of patients with celiac disease, evidence showing discordance in testing suggests that both tTG and EMA should be used to avoid false negative results.

• EMA is reported less reliable in early stage celiac disease without villous atrophy, the elderly, children under 3 years of age, smokers and advanced celiac disease.

• EMA positivity with normal biopsy was found to be a very early predictor for later overt celiac disease, and necessitates further follow-up, especially if the child is AGA-positive and there is a family history of celiac disease.

• A substantial proportion of patients with true celiac disease are EMA negative.

• AGA testing had 100% sensitivity for diagnosis in children less than 18 years of age with iron deficiency anemia compared to EMA sensitivity of 81.8% in the same study.

In any case, the mother must watch the child for symptoms of nutrient deficiencies after the introduction of dietary gluten – whenever (if) she starts him or her. Children under the age of two seem to present with classic signs of failure to thrive, diarrhea, however, after that age atypical symptoms become predominant. Use Recognizing Celiac Disease to identify changes in behavior, growth, skin, hair, eyes, intelligence – anything at all – because that age period is a critical time in growth and development of the body and the mind.

Here are two videos about a child who presented with atypical symptoms at age 3 months, whose mother knew she had celiac disease but was told her children could not have it because it was so rare…and even if they did, she would recognize it because the kids would have the same symptoms she did: diarrhea, weight loss, and fatigue. Her son had neurological symptoms only, disturbing schizophrenic-like episodes and you will see it was a miracle that he was diagnosed at all. You may recognize his symptoms in other children you know who you never suspected of having celiac disease. These videos are a real eye-opener and exactly why people need Recognizing Celiac Disease – so they can determine whether symptoms are related to celiac disease and the causes when they are. It is very likely that many children are being affected just as this little boy was…it is far less likely that the events that led to his diagnosis will happen for them.

Part 1 – Celiac Disease Manifesting as a Mental Aberration in a Baby

Part 2 – Celiac Disease Manifesting as a Mental Aberration in a Baby

References:

Cleo J. Libonati. Recognizing Celiac Disease, Fort Washington, PA, USA: GFW Publishing, 2007. www.recognizingceliacdisease.com

Abrams JA, Diamond B, Rotterdam H, Green PH. Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Dig Dis Sci. Apr 2004;49(4):546-50.

Lurz E, Scheidegger U, Spalinger J, Schöni M, Schibli S. Clinical presentation of celiac disease and the diagnosic accuracy of serologic markers in children. Eur J Pediatr. Oct 2008. Epub.

Donaldson MR, Book LS, Leiferman KM, Zone JJ, Neuhausen SL. Strongly positive tissue transglutaminase antibodies are assodciated with Marsh 3 histopathology in adult and pediatric celiac disease. J Clin Gastroenterol. Mar 2008:42(3):256-60.

Donaldson MR, Firth SD, Wimpee H, et al. Correlation of duodenal histology with tissue transglutaminase and endomysial antibody levels in pediatric celiac diasese. Clin Gastroenterol Hepatol. May 2007;5(5):567-73.

Esteve M, Rosinach M, Fernández-Bañares F, et al. Spectrum of gluten-sensitive enteropathy in first degree relatives of patients with celiac disease: clinical relevance of lymphocytic enteritis. Gut. Dec 2006;55(12):1739-45.

Sanders DS, Hurlstone DP, McAlindon ME, et al. Antibody negative celiac disease presenting in elderly people – an easily missed diagnosis. BMJ. Apr 2005; 330(7494):775-776.

Utiyama SR, Nass FR, Kotze LM, Nisihara RM, Ambrosio AR, Messias-Reason IT. Serological screening of relatives of celiac disease patients: antiendomysium antibodies, anti-tissue transglutaminase antibodies or both? Arq Gastroenterol. Apr-Jun 2007;44(2):156-61.

Boger CP, Thomas PW, Nicholas DS, Surgenor SL, Snook JA. Determinants of endomysial antibody status in untreated celiac disease. Eur J Gastroenterol Hepatol. Oct 2007; 19(10):890-5.

Grodzinsky E, Fälth-Magnusson K, Högberg L, Jansson G, Laurin P, Stenhammar L. IgA endomysium antibodies – an early predictor for celiac disease in children without villous atrophy. Acta paediatr. Jul 2008;97(7):972-6.

Shah VH, Rotterdam H, Kotler DP, Fasano A, Green PH. All that scallops is not celiac disease. Gastrointest Endosc. Jun 2000;51(6):717-20.

The below article by Nadine Grzeskowiak is a good explanation of why the gluten-free diet can work for anyone and everyone and pitfalls of the celiac tests.  Medical experts speak of the gluten-free diet as if it is something strange, yet most unprocessed foods you cook yourself are naturally gluten free.  All meats, seafood, fruits, vegetables, nuts, legumes, dairy (unless gluten was added to them), corn, rice and other grains,(besides wheat, barley, rye or oats), naturally do not contain harmful gluten.  Wheat, barley, rye and oats don’t contain any nutrients you cannot get in other foods, so what is the big deal with not eating them?Nadine’s article is excellent.  The only thing I would add is if you do eliminate the gluten grains of wheat, barley, rye and oats and feel better within two weeks, get yourself tested for celiac disease.  A positive diagnosis makes dealing with healthcare providers much easier.  That said, if it comes back negative but you feel better being gluten-free then eliminate gluten from your diet and be healthy. You can find Nadine’s blog article at Gluten Free RN -John Libonati, Editor Glutenfreeworks.com
john.libonati@glutenfreeworks.com

Discussion | | Nadine Grzeskowiak | May 13, 2008

I have thought for a long time about this very question.  Who would suggest such a thing?  I would.  The main reason I would dare to make such a statement is because we have been so negligent in recognizing and treating people with celiac disease.  Not a day goes by that I don’t hear about or speak to someone directly who has suffered needlessly for years.  The other main point I want to make is that NONE of the currently available testing is 100%.  The blood tests and endoscopic biopsies are great tools if they are positive.  If they are negative, I have heard of too many people tell me ‘I don’t have celiac disease, my blood test/biopsy was negative’.  This is a major cause for concern to me.  Both of these tests do not confirm you don’t have, or will never develop celiac disease.  First, neither test is 100% reliable.  Second, both tests are simply a snapshot of right now.  I have also seen test results that are clearly positive for celiac disease, but read as negative by a medical provider that does not understand what the results mean.  The genetic testing is great and it is my first choice when testing people.  The test is a cheek swab, I get results in one week and it is covered by most insurances.  I utilize Kimball Genetics in Denver, Colorado,  www.kimballgenetics.com.  I have run into this scenario in the past week: a 12 year old on a gluten free diet for several months, a remarkable recovery from many symptoms while on the gluten free diet, and yet, she tests negative for DQ2 and DQ8.  Is she at risk for celiac disease if she eats gluten?  Are there other genes that could be looked at?  I am gathering more data on this because nothing is black and white with gluten intolerance, there are many grey areas.  Other than, of course, the need to be on a strict gluten free diet for the rest of your life if you have celiac disease.  Not much grey there.

So, this leads me back to the original question: everyone on a gluten free diet?  In my perfect world, the answer would be a resounding YES!  If people would simply try the gluten free diet for a month, most, if not all of those people will feel better.  It remains simply a diet change.  Change your diet and feel better, doesn’t that sound appealing.  To some yes, and to others, not really. Not without the proof that they need to change their long held diet and lifestyle habits.  It also sounds quite un-American to say ‘I can’t eat wheat, barley, rye and oats’, by extension, bread, pies, cakes, beer and pizza.  My most recent convert to a gluten free diet, said to me, “You know I don’t even miss the bread anymore, it doesn’t even appeal to me, I feel so much better on the gluten free food”.  This is a woman who has had symptoms for most of her 76 years and I had a hard time convincing her to try the gluten free diet for a month.  She is convinced now.  I can tell many stories with the same happy ending.  I can also tell you that most men have a harder time changing anything, let alone their diet, than women.  Trust me, I am a nurse and I have no reason to lie to you.  Try it.  Go gluten free for a month and contact me with your results.  GO!