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How Early Can Celiac Disease Be Diagnosed?
- By Dr. Rodney Ford M.D.
- Published 01/8/2008
- Celiac Disease Diagnosis, Testing & Treatment (Gluten-Free Diet)
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Dr. Rodney Ford M.D.
Dr. Rodney Ford is a Pediatric Gastroenterologist. He was Professor of Pediatrics at the Christchurch School of Medicine. He runs the Children’s Gastroenterology and Allergy Clinic in New Zealand. He has written a series of 7 books on gluten (www.doctorgluten.com). His main theory is that symptoms from gluten reactions arise from brain and nerve damage. His latest book is "The Gluten Syndrome" which encapsulates current ideas and concepts of gluten and the harm that it does.
View all articles by Dr. Rodney Ford M.D.How Early Can Celiac Disease Be Diagnosed?
This article appeared in the Summer 2007 edition of Celiac.com's
Scott-Free Newsletter.
This question, “how early can you diagnose celiac disease?” is a major concern for both parents and paediatricians. This is because, like many diseases, celiac disease comes on slowly. This means that it can take a long time to make the diagnosis.
Celiac disease can develop slowly?
Yes, celiac disease can develop very slowly. The symptoms can be subtle. It is a progressive disease. When you are first born, you cannot have celiac disease as you have never been exposed to gluten. However, if you have the right genetic make up (that is you have the celiac gene) and the right environmental circumstances (eating gluten and getting gut inflammation), then celiac disease can develop.
Finding tissue damage
Celiac disease is a condition that is recognised when you get damage to your small bowel tissue. This damage is triggered by gluten.
The standard way to detect this tissue damage is by taking a gut biopsy of the small bowel skin (also called the mucosa). This is done by the technique of upper endoscopy whilst under an anaesthetic. Tiny fragments of gut tissue are snipped off with a pair of forceps. This tissue is then sent to a pathology lab. The lab people (histologists) look down their microscopes at this tissue sample. They are looking for the gut damage called villous atrophy which is characteristic of disease.
Early antibody changes – IgG-gliadin
Importantly, long before the tissue becomes obviously damaged by gluten, your body can begin to react to the gluten in your diet.
An early sign of a gluten immune reaction is that your body produces antibodies to the gluten in your diet. This can be seen in a blood test that looks for an antibody called the IgG-gliadin antibody (also known as anti-gliadin-antibody). Also the IgA-gliadin antibody can develop at this time.
Even in these early stages of gluten reactions (before the development of any gut damage of celiac disease), you or your child can be feeling unwell. Many of the symptoms of celiac disease can be recognized in these early stages. This is before the tissue damage can be seen by the histologist.
The blood test to look for tissue damage is called the tissue transglutaminase antibody (abbreviated as tTG).
Early bowel damage cannot be seen
The next thing to happen is that the tissue in the small bowel gets slightly injured but not enough to be identified by the histologist. However, such damage can be shown by an electron microscope. This early damage can also be detected by the presence of the tTG antibody.
Usually, when the tTG blood test goes up, then this is an indication to do the endoscopy and look for any tissue damage. However, early in the progression of celiac disease, this damage may not show up by conventional methods. This means that the small bowel biopsy and the histology results are good for confirming celiac disease, but they cannot rule it out.
To act or to wait?
In my experience, I have seen a number of children develop celiac disease whilst I have watched and waited. While we doctors wait and see if the gut will become progressively damaged, these children will continue to experience their gut symptoms and they may not be growing so well. We doctors are waiting to make a certain diagnosis of celiac disease. We want to repeat their blood tests and do another endoscopy.
Is this reasonable? Experience has changed my mind. I have come to the conclusion that this is not an appropriate way to deal with these children. Currently, most medical specialists are adamant. They will not make a diagnosis of celiac disease until the histologist can confirm the typical tissue damage.
How long can you wait?
I have given up the “wait and see” approach. I act. I carefully scrutinize the symptoms and the blood test results - the gluten antibodies (IgG-gliadin) and tissue damage antibody (tTG) levels. I may organise an endoscopy test. If these findings suggest the development of celiac disease, then I make a pre-emptive diagnosis of “early celiac disease”, often before the gut gets badly damaged. I give these children a trial of a gluten-free diet – I see what their clinical response is. Pleasingly, most get completely better! If they get better, then they want to stay gluten-free.
The problem is that the diagnosis of celiac disease currently hinges on the abnormal appearance of the small bowel. This damage can take years to develop.
The main argument against my approach is that if you do not have a “definite” diagnosis of celiac disease, then you cannot advise a gluten-free diet for life. In my opinion, the decision to go on a gluten-free diet is not a black and white choice. For children, I give them the option of a gluten-free diet early in their disease. Let them feel well. Let them grow properly. Later, as an adult, they can challenge their diagnosis and have a formal gluten challenge when they understand the issues.
Conclusion – my approach
As you can see, it is difficult to say how early you can diagnose celiac disease. It is my practice to carefully assess children regarding their symptoms, their antibody levels, their genetic status and their endoscopy results (if appropriate).
I do not think it is logical to leave children with significant symptoms waiting for the small bowel damage to eventually occur. Indeed, I think that these long delays in treatment are inhumane. Postponement of a gluten-free diet will cause these children to suffer ongoing symptoms. Worse, they can have growth failure, from which they may not recover.
My approach is to put these children on a gluten-free diet early. I watch and see if thy have a clinical response: if they get better. The evidence shows that you cannot rely entirely on the small bowel biopsy for your diagnosis of celiac disease. These children can have a gluten challenge later in their lives.
The onset of celiac disease is progressive. Why wait until the bitter end before going gluten-free? The onset of celiac disease is progressive. Why wait until the bitter end before going gluten-free? You can find out a lot more from my webpage: www.doctorgluten.com
This question, “how early can you diagnose celiac disease?” is a major concern for both parents and paediatricians. This is because, like many diseases, celiac disease comes on slowly. This means that it can take a long time to make the diagnosis.
Celiac disease can develop slowly?
Yes, celiac disease can develop very slowly. The symptoms can be subtle. It is a progressive disease. When you are first born, you cannot have celiac disease as you have never been exposed to gluten. However, if you have the right genetic make up (that is you have the celiac gene) and the right environmental circumstances (eating gluten and getting gut inflammation), then celiac disease can develop.
Finding tissue damage
Celiac disease is a condition that is recognised when you get damage to your small bowel tissue. This damage is triggered by gluten.
The standard way to detect this tissue damage is by taking a gut biopsy of the small bowel skin (also called the mucosa). This is done by the technique of upper endoscopy whilst under an anaesthetic. Tiny fragments of gut tissue are snipped off with a pair of forceps. This tissue is then sent to a pathology lab. The lab people (histologists) look down their microscopes at this tissue sample. They are looking for the gut damage called villous atrophy which is characteristic of disease.
Early antibody changes – IgG-gliadin
Importantly, long before the tissue becomes obviously damaged by gluten, your body can begin to react to the gluten in your diet.
An early sign of a gluten immune reaction is that your body produces antibodies to the gluten in your diet. This can be seen in a blood test that looks for an antibody called the IgG-gliadin antibody (also known as anti-gliadin-antibody). Also the IgA-gliadin antibody can develop at this time.
Even in these early stages of gluten reactions (before the development of any gut damage of celiac disease), you or your child can be feeling unwell. Many of the symptoms of celiac disease can be recognized in these early stages. This is before the tissue damage can be seen by the histologist.
The blood test to look for tissue damage is called the tissue transglutaminase antibody (abbreviated as tTG).
Early bowel damage cannot be seen
The next thing to happen is that the tissue in the small bowel gets slightly injured but not enough to be identified by the histologist. However, such damage can be shown by an electron microscope. This early damage can also be detected by the presence of the tTG antibody.
Usually, when the tTG blood test goes up, then this is an indication to do the endoscopy and look for any tissue damage. However, early in the progression of celiac disease, this damage may not show up by conventional methods. This means that the small bowel biopsy and the histology results are good for confirming celiac disease, but they cannot rule it out.
To act or to wait?
In my experience, I have seen a number of children develop celiac disease whilst I have watched and waited. While we doctors wait and see if the gut will become progressively damaged, these children will continue to experience their gut symptoms and they may not be growing so well. We doctors are waiting to make a certain diagnosis of celiac disease. We want to repeat their blood tests and do another endoscopy.
Is this reasonable? Experience has changed my mind. I have come to the conclusion that this is not an appropriate way to deal with these children. Currently, most medical specialists are adamant. They will not make a diagnosis of celiac disease until the histologist can confirm the typical tissue damage.
How long can you wait?
I have given up the “wait and see” approach. I act. I carefully scrutinize the symptoms and the blood test results - the gluten antibodies (IgG-gliadin) and tissue damage antibody (tTG) levels. I may organise an endoscopy test. If these findings suggest the development of celiac disease, then I make a pre-emptive diagnosis of “early celiac disease”, often before the gut gets badly damaged. I give these children a trial of a gluten-free diet – I see what their clinical response is. Pleasingly, most get completely better! If they get better, then they want to stay gluten-free.
The problem is that the diagnosis of celiac disease currently hinges on the abnormal appearance of the small bowel. This damage can take years to develop.
The main argument against my approach is that if you do not have a “definite” diagnosis of celiac disease, then you cannot advise a gluten-free diet for life. In my opinion, the decision to go on a gluten-free diet is not a black and white choice. For children, I give them the option of a gluten-free diet early in their disease. Let them feel well. Let them grow properly. Later, as an adult, they can challenge their diagnosis and have a formal gluten challenge when they understand the issues.
Conclusion – my approach
As you can see, it is difficult to say how early you can diagnose celiac disease. It is my practice to carefully assess children regarding their symptoms, their antibody levels, their genetic status and their endoscopy results (if appropriate).
I do not think it is logical to leave children with significant symptoms waiting for the small bowel damage to eventually occur. Indeed, I think that these long delays in treatment are inhumane. Postponement of a gluten-free diet will cause these children to suffer ongoing symptoms. Worse, they can have growth failure, from which they may not recover.
My approach is to put these children on a gluten-free diet early. I watch and see if thy have a clinical response: if they get better. The evidence shows that you cannot rely entirely on the small bowel biopsy for your diagnosis of celiac disease. These children can have a gluten challenge later in their lives.
The onset of celiac disease is progressive. Why wait until the bitter end before going gluten-free? The onset of celiac disease is progressive. Why wait until the bitter end before going gluten-free? You can find out a lot more from my webpage: www.doctorgluten.com
Subscribe to free Celiac.com email alerts (1-3 email per month with the latest celiac disease research and information, gluten-free recipes, etc.).
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Comments
#1 ( Susan Phipps)
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Hear, hear. Finally someone sensible. My child was suffering so much and not growing, when I took her off gluten for two weeks and everything cleared up and she started growing again, I have not been able to put her back on gluten. Unfortunately her father does not feel the same and refusing to acknowledge this. Formerly, he was a surgeon.
#2 ( Julie Jones)
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Finally, I see a medical opinion that backs up what my daughter's pediatric GI and I decided to do for her years ago. She has a brother with Celiac Disease, had exhibited symptoms for over a year, but her blood work and a biopsy were negative for CD. We decided to go gluten free anyway and let her decide later in life if she wanted to do a gluten challenge. We just did not want the damage to her brain that my son endured in the 3 months it took to get his diagnosis. He ended up needing speech therapy for 5 years. My daughter now has a full head of hair and normal bowel movements.
#3 ( Clare)
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This is good. We had our son's stool tested by Enterolab and found fat malabsorption, the specific gene, and casein issues. This was before any symptoms (my father is celiac and osteoperotic etc because of it). When we had his blood tested they didn't have any issues with it, but we weren't on wheat either. The mainline doctors didn't know that you needed to be on wheat for it to show up in the blood. They told us to put him back on a diet with gluten! When he does eat wheat his eyes get black circles and his bowel movements prompt him to spend much time in the bathroom because of constipation. My husband semi-reluctantly goes along with it, but is coming around.
#4 ( Rosie)
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Great, I love this article and I have already sent a link to my daughters gastroenterologist. My little Nina is probably celiac, but her biopsy was negative. She had to be on gluten for 3 months before that, she was really suffering and doctors found nothing... But when on diet, she feels great, she eats!! and grows, she has no pain and nobody believes me :-(
#5 ( Sue Joba)
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Thank you Doctor Ford!!! My son’s tests were coming back normal. We however, never had a TTG done. His blood work was a little bit slanted, but with in the limits, IGG over normal and AIG below normal. All the other tests came back normal and it took forever to see the doctor. I saw my son fading away before my eyes. I did research of my own and came to the conclusion that not only was he CD but my daughter and I as well. I put all three of us on a diet after spending months of going down the medical path, and have never felt better. But, in the back of my mind wondered if I had done the right thing. Now, I feel better and can stand up to people that say, “You have not been tested and your son’s are normal. How can you be sure?”
#6 ( Caroline)
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my 9 year old has had a negative celiac test result, but there is no doubt he is better on a gluten free diet. whenever he has even as little as a continental breakfast, he is throwing up at night. Without gluten he is fine. I guess we will just have to be retested in due course.
#7 ( janet Lyngdal)
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Logical approach and exactly what I have done with my son against the advise of our pediatric GI who suggested his incontinence problems were due to constipation. We knew this wasn't the case. Within 2 weeks of a gluten free diet his situation improved 100%. He also has had to see a pediatric physical therapist who has been re-training him to use his pelvic muscles. Between the gluten free diet and PT he is a completely different more confident boy.
#8 ( Leslie Stevens)
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Finally! A common sense approach to diagnosing celiac disease. Current tests for celiac are not sensitive enough to detect early stage celiac. Dr. Ford rightly listens to the symptoms presented and acts upon them, as opposed to disregarding them as irrelevant. One would think that when a gluten-free diet eliminates negative symptoms, that this challenge would speak for itself. (Isn't this the case with most conventional medicine?)
One exception to the article however:
my daughter was BORN WITH A PATCH OF EXCEMA ON HER KNEE and was later diagnosed with dermatitis herpetiformas (a type of celiac). This demonstrates that the celiac fetus experiences damage in utero, when its mother eats gluten, damage that can even be permanent (witness ADD, ADHD, aspergers, autism, schizophrenia- the so called austism spectrum).
#9 ( Jane Lynn Cooper)
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This article has given me the conviction to put my youngest on a gluten free diet.
#10 ( Rosemarie Corsner)
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My adult daughter has been diagnosed with celiac disease. My two grandchildren and I have the gene and chose to go gluten free, dramatically increasing our quality of life.
#11 ( kevin haf)
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Good information. I am a 32 year old celiac with definite nerve damage more than bowel issues. I also had delayed growth and issues as a child.
#12 ( Roxanne Mason)
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I think another consideration in putting these children on a gluten free diet early is possibly avoiding the development of other autoimmune diseases. As a dietitian who deals mostly with adults. by the time my patients get a diagnosis they have many other medical conditions related to celiac disease! I feel like many of there conditions could be avoided with earlier diagnosis.
#13 ( Carlena Milligan)
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Good Common Sense
#14 ( Peter Russell)
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What a brilliant, common sense article. When stated like this, with the benefit of successful case studies to back up the conclusions, why would other specialists still insist on using the old methods?
#15 ( Jean Shanley)
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Great points made by Dr. Ford. However, I wonder if Dr. Ford is aware of the stool tests available from www.enterolab.com, which are great for early diagnosis. My daughter was 3 when I had her tested, with no apparent symptoms, and her test results were extremely abnormal. I would never require her to wait the decades I had to wait to get diagnosed. And in my 30s, I still had a negative blood test. The GI community needs to wake up - blood tests and endoscopies are great money makers, but are not the "gold" standard in diagnosing gluten sensitivity.
#16 ( Sandi Bowman)
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Finally someone cares more for the health of the child than the results of some tests which are not always reliable anyway. Bravo!
#17 ( Sarah)
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YAY!!!! I can't tell you how relieved I was when my Gastro somewhat reluctantly backed my decision not to do a biopsy on my then 4 year old. She was doing great on a gluten free diet after blood tests showed likely celiac. I saw no point of putting her through the procedure. We had been watching for it for years, as three of her cousins have it. I refused to make her get sick just so we could diagnose her formally. good news is after a year gluten free, her finger nails are strong and growing, I have had to cut her toe nails for the first time in her life. She looks great (no more circles under her eyes), no more "Mommy, my tummy hurts".... ever. The gluten free diet was the best thing I ever did for her. We are now watching her sister (no positive signs or tests to this date), think I'm just going to go ahead and do the gene test, if she has the gene I'm going all the way gluten free for everyone, even me...
#18 ( Christine Hicks)
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I think is article is wonderful. My daughter was diagnosed at age 2 and we weren't sure she would survive. She pulled through and just turned 19! We are now battling her colon cancer and wondering how much the 17 years of Celiac disease played into this latest trauma.
#19 ( jean)
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I loved that this doctor is proactive in his approach to a sick child.
#20 ( Robyn)
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A very thoughtful approach. How refreshing.
#21 ( Alison Rae)
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My son experienced tummy & headaches, lethargy, wingy generally unwell for a year. I ordered blood tests which confirmed the celiac gene, he is now off gluten & a healthy, happy, normal boy. This article spurred me to act. Well done!
#22 ( Beth)
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Good article but something very important left out. A stool test is the best option for determining the gluten intolerance. The blood test is not very accurate and the tissue sample is too invasive. Enterolab.com performs this test well and no Dr. visit is necessary. My daughter was diagnosed with only a gluten intolerance not Celiac due to the fact that we caught it early. She is now 7 years old and has been on the diet for a year now and doing well!! Looking back, she has had intestinal issues since she was 2 or 3 years old.
#23 ( deb)
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Finally, someone with some sense. Wish we had doctors in our community with some.
#24 ( Valeri Browne, Mychef.bz)
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Bravo Doctor! I specialize as a personal chef to many gluten free clients; two are 3 and 3/12 years old and their parents did not wait! Even if you can't afford the tests, err on the side of caution and put them on it anyway! You will very quickly know you did the right thing.
#25 ( Tam)
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Great advice!
#26 ( Sylvia Wessling)
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I'm 43 yrs old. I started with taking an allergy test in my 20's showing I was allergic to the world. In my 40's I had a blood allergy test done and it showed only a few allergies. But I was having low and high blood pressure reactions, which I read in an article, are the ultimate form of allergy reaction. Pretty much life or death situation. I was in the hospital and was eating only soy cheese and macaroni. One day I decided to eat Cream of wheat (2 spoonfulls) and I almost died. The doctors couldn't figure it out. My husband had just read about high blood pressure as being one of the symptoms of gluten wheat allergy. I immediately went on the diet and am getting better. I have energy and lost 10 pounds in ONE day. (I was swollen that bad from the allergy). I haven't gotten tested but the proof is in my health. I thank my husband for helping find my cure, and a possible explanation as to why our son is autistic.
#27 ( Judith Tolbert)
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My children's pediatrician took one look at my son and diagnosed him with gluten enteropathy after I had been going to a different pediatrician for 6 months and my son was getting sicker and sicker. I called the Celiac association in CA and the lady who answered the phone had the audacity to suggest I put my son back on gluten so he could get the "gold standard" blood and endoscopy because when he is 17 he might want to eat gluten. I told her he is free to make that decision when he will stay up bu himself with his belly hurting. As long as I have to stay up with him he will remain gluten free. He had a hgb (hemoglobin) of 5 and we were sent to the ER for a blood transfusion. He was 1 when we started to take him to Dr. Adan. Two when he went back to Dr Oyemade.
I am happy to see someone in the medical community treating the patient and not the lab work.
#28 ( Valerie Martin)
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I just thought I would put my two cents in...My 5yr old was biopsy diagnosed when she was 9mos. old. She was born in pain and continued until she was almost 3ys. Comment #8 by Leslie Stevens mentioned about in utero damage to an unborn celiac. I feel that this was the case for me. I was told that medical journals would have to be rewritten and updated because my daughter was the youngest person to be biopsy diagnosed (who was also strictly breast-feed) and dying from malnutritional issues.
#29 ( MARY)
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VERY INFORMATIVE
#30 ( margie spink)
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I had been sick my entire life. My father was diagnosed with schizophrenia and my mother had serious issues with thyroid and skin conditions. My brother died from some liver problem at 12 yrs in the 50's. My dad passed away and his body was donated to Stanford University. My Mom was diagnosed with Celiac in 1995 at 80 yrs. I followed up with Stanford and they did a DNA on my dads tissue. He had all genes for Celiac and so did my mom. No wonder we all were so sick all our lives. Now my children and I are gluten free and doing very well. My siblings are also doing well but some won't follow the diet.
#31 ( Mary Rose)
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I love a doctor with a common sense, practical approach to medicine. I went 40 years undiagnosed because no one ever thought about celiac disease. They said that only children get that and sent me to about 5 G.I. series over all those years. Told me it was my nerves! Ha! As a result my intestines have a lot of damage which cannot heal. But I feel and look well and have lots of energy.
#32 ( Diane Whitlock)
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Thanks for the article, the comments are so real! I have read a lot about the diets that can help clear up the symptoms I was having, and I have not been experiencing any discomfort since I began a gluten free diet! I had been suffering from various allergies all my life, now I am feeling very healthy! I have only been on a gluten-free diet since June of 2006. Thanks again for being there for me!
#33 ( Michelle)
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It is so refreshing to read this practicality from someone "degreed" in the medical field. I have been on a gluten-free diet for over 6 years, though my endoscopy showed no damage, and feel better than I did all the years before. I feel it is especially important that this be watched for/discovered early in children due to proper growth & development. We all need to listen to our bodies & to the bodies of our children - the body does not lie!! I'm so thankful I found out about a gluten-free diet - it has changed my life and that of my children.
#34 ( Sondra)
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I am an adult that went through the routine of my doctor not knowing what was wrong besides having GERD and my GI Dr. would not listen to me about what was wrong when I ate. So, I researched and put myself on the gluten free diet and I have been better ever since, with exception to find products that say Gluten & Wheat free only to have a reaction and see that in small print it was processed in a factory that also processes wheat!!! I am continually watching my children and my youngest son is having some issues so I am slowly adding gluten free to his diet.
#35 ( Mary Oltmans)
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Excellent information.
#36 ( Donna Fort)
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Absolutely wonderful and timely information for a situation in our family.
#37 ( Shelley)
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Why not perform the fecal test from Enterolab for children? Since it looks at genetic markers, wouldn't it be a better choice (less painful) than a biopsy?
Thanks,
Shelley
#38 ( Diana Gillam)
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What great advice to parents. My daughter wasn't growing, had thin hair, and loose bowels for months. Her pediatrician said she was fine. After stumbling on a magazine article by chance I took her off gluten. Her bowel issues cleared up and she grew like a weed. I suggested celiac disease to her pediatrician, and he ordered a blood test which showed nothing because she was off gluten. He didn't understand she needed to challange the gluten to get an accurate diagnosis. I came to the same conclusion on my own as in the article. If she is doing so well off of gluten, and she gets upset tummy if we mess up, then why wait for a diagnosis? She can challenge it later as an adult.
#39 ( kaki)
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Fantastic. I've been a celiac for 14 yrs. I was a sick kid and now I know why! I almost died from it. What a difference "gluten free" can be.
#40 ( Sophie)
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My baby started the gluten-free diet at 6 weeks old (he was exclusively breast fed for 11 months, when we introduced carrot and rice). It was a last resort move to avoid NICU and IV feeding. And going back to the newborn photos, you can see the pain on his face, nearly from day one. I'm still sad he was 6 weeks in severe pain, but the day we found out, I NEVER even considered reintroducing gluten.
My job as a mother is to raise my child in the safest possible conditions. When he's older, he'll decide for himself.
BTW: The romans could diagnose celiac 2000 years ago with "you eat you're sick. you don't eat, you're not sick".
#41 ( Susan Wolfgeher)
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Very conclusive. I have had the Enterolab tests done with gluten intolerance results and casein intolerance results. I wonder how many of those that are doing so well on gluten free diets would also benefit from casein free. I just wish I could convince my 18 year old that she too is intolerant before the damage is done. I work in a hospital and can see all the damage first hand. I wonder what their lives would be like had we recognized this earlier. So much for hind sight. We need to compel the physicians to listen to their patients symptoms. How easy it would be to change our diet to see if our symptoms were relieved.
#42 ( Taheer )
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Thank you....didn't really understand how I got this! but now I kind of get the gist of it...thank you once again =)
#43 ( Barbara)
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I always heard stories from my mother about how sickly I was from the time I was a baby. They took me to many doctors but no one knew what my problem was. All through school my mother was told that I was healthy but underweight, but I ate like a horse. Not until I was in my 40's and almost could not bear to walk because of the pain in my bones, did I find out through a great doctor and biopsy that I was celiac. I have had some growing spurts, leftover from childhood, and feel great on a gluten free diet. I have told my children and only one bothered to be tested and was positive and also lives gluten free. The symptoms are there, pain, stools etc. act on the gluten free diet, it will tell you soon enough.
#44 ( Jonathan )
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Amen. This is basically what happened to me. (I was "diagnosed" when I was two or three - I don't remember exactly when.) I had been starving and the doctor couldn't figure it out. Finally, my mom bumped into one of my grandfather's friends, a physician, who suggested the idea that it could be celiac. At first the doctor wouldn't hear it. (this was twenty years ago, and celiac was an even more unpopular diagnosis then) So my mom put me on the diet herself and I gained weight for the first time in a year. The doctor watched me for a while more and finally admitted that it must be celiac. He was also sensible enough to tell my mom not to get the official tests done until I was healthy again. Well, here I am, 21 years old, and life's been great.
Thank heavens that people are realizing that you can't treat kids and babies like adults.
#45 ( Peggy Phillips)
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I was finally diagnosed With Celiac disease at the age of 52. All my life I was sick. I had the skin condition, the allergies to everything. Asthma. and lost my hearing so that I am now profoundly deaf due to nerve deafness. All my life was one illness after another. Finally while trying to regain my strength due to anemia I stated eating whole wheat bread and whole wheat bagels thinking that would help. I thought I was going to die. Finally after the doctors became alarmed thinking I had a GI bleed they went in to fix it and took a biopsy of the small intestine and I finally after 52 years of misery got a diagnosis. I have been gluten free for 18 months now and my life is so much better. I have gained 16 pounds and pain free. It's truly amazing.
#46 ( Scott Miller)
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Thanks for the help.
#47 ( Susan Pierce-Ruhland)
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Thanks for an excellent article! My son had a biopsy "within normal limits" at the age of 2 1/2, though his gastroenterologist had seen his damaged gut. With his blood tests abnormal, his malabsorption at 27%, and his pain, we were more than willing to go with a gluten-free diet. His pain ceased, he started growing and thriving. He's almost 17 now, an active guy who is bright and outgoing. And when he's had an exposure...we know it! But because he never had a biopsy that "confirmed" his illness, his pediatrician never believed the diagnosis. It made working with him difficult at best, especially when we needed him to ask the pharmacist to verify that all prescriptions are gluten-free. We looked at it this way: the diet is not going to hurt our child, and it most certainly helps him. One principal of medicine is "do no harm." The diet does no harm, and the unwillingness to go with it might (and can) do harm!
#48 ( Dr. Tom O'Bryan)
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Bravo Dr. Ford. Excellent article. We follow the same philosophy in our office with one addition. The New England Journal of Medicine tells us that having antibodies to the intestines (transglutaminase) and no identifiable damage on biopsy, PREDICTS future celiac disease.
'The presence of gluten-induced autoantibodies in subjects with initially normal villous architecture on small-bowel biopsy who are eating normal amounts of gluten predicts subsequent mucosal deterioration and celiac disease.'
(N Engl J Med 348;25, June 19,2003 2517-2524)
We also check for the genetic vulnerability to CD (DQ2 and/or DQ8). If a child (or adult) has one of the genes, and an elevated antibody to the intestines, we strongly recommend a trial period of gluten, dairy, sugar, and caffeine free eating. The results, as you know, are nothing short of fantastic for the vast majority of families who implement this. And yes, we strongly recommend the entire family embraces this eating style. Everyone feels better when they do. Dad's weight comes down, Mom's energy comes up (the thyroid starts working better), and the kids do much better in school.
And between the many excellent books out now on the topic of how to implement gluten free eating, the numerous Support Groups around the country, and chat rooms like this, more and more people are learning that being gluten-free is, as Danna Korn writes in her books, a fantastic opportunity to move up the ladder of health.
#49 ( Deborah Shear)
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I have just one thing to say...
A doctor with common sense, very uncommon...
#50 ( Adrienne Terada)
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This article was just what I needed to hear. I am sort of new to all the celiac information. My son who is now almost 5, has had severe skin issues and allergies since he was 2 months old and some behavior issues too. He was even hospitalized at 2 years old for abnormal symptoms, no growth and sever skin issues. We went to numerous doctors, naturopaths, allergists, pediatric dermatologists, etc with not a single suggestion of gluten-free. Later, at 4 years old, he was diagnosed with type 1 diabetes. They told us that celiac was common in Type 1 diabetic children, but his test from the hospital was negative. After we got his diabetes managed, I started reading a little more on my own and talking to people. I started to realize that it may be hard to diagnose, and then I also read that skin issues may be related to gluten. At that point, I took the view point of this article. Why wait any longer to see if he might develop celiac or if the test comes back positive at a later time when his health is so fragile. My son was obviously unhealthy. We had done wheat free for years, but not gluten free, so it was really only a few adjustments in his diet. After 2 days, his skin was clearer and smoother than it had been his entire life. Now I'm wondering if it may have had an affect on his diabetes as well. When I told his doctor about what we did, he said we should put him back on gluten or he will never get an accurate test. I thought he was crazy! Then when he examined his skin, he said not to put him back on gluten. No kidding! I wish I had known more sooner so I could have eliminated and prevented so much of my son's suffering, and I hope these kinds of articles help more people who are suffering.
#51 ( Fawn)
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Excellent article. I wish my daughters had been diagnosed earlier than 20 and 22!
#52 ( Donna Burkey)
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Great article. I also had gut problems all my life. No Dr could find out why. Finally in my late 30's
they found I was lactose intolerant. Changed my diet and still had problems (diarrhea). At the age of 53 I had a small intestinal stage 2 cancer removed.
GI Dr. tested me for sprue and sure
enough I had it big time. I have been gluten free for 10 years and no recurrence of cancer- Praise the Lord! Don't let Dr. tell you you are imagining things when you know something isn't working right.
#53 ( Steve)
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My 12 year old daughter's IgG test was positive for gluten and dairy. We never tested for celiac but it seems a forgone conclusion. This doctor is right in his approach. I wish we had known back when the stomach pains started.
#54 ( Karen)
"When you are first born, you cannot have celiac disease as you have never been exposed to gluten."
This answers one of several questions of harm in the case of a pregnant woman with celiac - Is the baby in danger if the celiac mother has the autoimmune response to gluten? Even if the baby is not actively responding to gluten via its immune system, is there anything from the mother's system response that could affect the fetus.
And if so, should celiac testing be part of prenatal care??
#55 ( Betty Wyckoff)
I have heard say that celiac is a genetic disease. Is it only a genetic disease? I'm wondering if it wouldn't be easier to see if these children have the gene for the disease before doing an endoscopy and/or waiting for bowel damage? I realize that there are wheat allergies etc. that might not be genetic. But then my next question is do genes change as we get older? If people don't have the gene for it when they are young, there is no way for celiac to develop later on. I have celiac disease and I have the gene for it although it did not develop until after I was an adult.
#56 ( Elizabeth Pofahl)
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Dr. Rodney Ford is awesome! How I wish there were more doctors and specialists like him!!
#57 ( charlotte)
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Great and interesting article!
#58 ( Susan Pante)
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Well, how to help save your child's life armed with this information and give them a healthy childhood versus a sickly one; later translating to their adult life. Bravo for Dr. Rodney Ford to take a proactive approach in helping the worldwide community to become knowledgeable about the effects of gluten in those of us that are susceptible!!!! We seem to have a long line of 'non'-celiac gluten problems (4 generations worth) in our family. Besides the general unwell feeling, gut symptoms and being so fatigued as to feel like a walking dead body, gluten disease in our family has translated to autoimmune disease (Primary Hyperparathyroidism--which, among other things, caused Osteopenia in me) and neurological disease -- Spinal Cerebellar Degeneration with ataxia and neuropathy components. In reading some comments by other readers, I am also now wondering about the hearing loss prevalent in our family--is this 'nerve' related. There are also cases of colon cancer and esophagal cancer, said to have links to gluten. My adult daughter and I, within the last two years, have both been diagnosed as having 'non-celiac' gluten intolerance (sensitivity). I have had the small intestinal biopsy which ruled out celiac (at that time). Thank goodness for my new gastroenterologist (who says that I am coming in under the radar for testing for gluten problems that are non-celiac as there are no 'specific' tests) and for my genetic neurologist, as well as our new family doctor, who are progressive in helping us find the answers to our sick bodies. They are aware of other problems with gluten aside from celiac disease. We do so well on a gluten-free diet; it is like giving 'life' to us. Just a comment---In the first instance, taking gluten away with the elimination diet, one starts to feel well and can easily take this for granted because we are feeling well (and forget what it is like to feel so bad). However, the conclusive answer comes with the challenge diet of putting gluten back into the body----it is like the final summation and tying the whole scientific experiment up in a bow--------because it is then that one realizes how sick gluten makes our body feel---and this doesn't include the insidious progressive damage that we can't see going on inside of our bodies. I have a 'low' tolerance for casein; my daughter seems OK with casein. Wishing good health to others in their quest.
#59 ( Jan)
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I have come to the conclusion that it is a form of "child abuse" if they are not taken off gluten when damage is being done and symptoms are present. With stool testing available that WORKS (whether Dr. Fine has his testing "peer-reviewed" or not), who cares whether it's full blown Celiac Disease or not. Gluten sensitivity can do as much damage if not more with other issues besides intestinal problems - namely neurological in nature. Parents - open your eyes and don't wait. The earlier they're taken off, the less they will depend on all the pizzas, fast foods, etc. which are unhealthy anyway.
#60 ( Samantha)
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Like the other responses before, AMEN! My son had fallen off his growth chart starting at 6 months old (when he started eating wheat baby cereal) and had chronic diarrhea since day one. Finally at 2 1/2 after 2 different pediatricians telling me he was fine, I went to a 3rd who agreed with me, he should be tested for Celiac (I had been researching it). I was sent to a Pediatric GI who ran the panel with many other tests for allergies, but the lab made an error and didn't run the Celiac Panel. We then went to a Allergy/Asthma specialist who ran the Celiac Panel and diagnosed Celiac based on a high IGG result (IGA was normal). He then recommended a gluten free diet. Based on this article, IGG results indicate a problem and other tests become positive later as the disease progresses. When the Pediatric GI and Pediatrician received the results, they DID NOT accept the diagnosis since only the IGG was high (they claim this means nothing on its own) and the Pediatric GI insisted that we put him back on gluten otherwise his "life would be too difficult" and that we should come back in a few months after eating gluten and she would retest (using her lab). We didn't and in 5 months he has grown nearly 3 inches and the diarrhea is gone making it possible for him to be potty trained. Our pediatrician agrees that if he feels better, there is not need for him to go off the gluten free diet & we should keep him on it. We can challenge it later in life if we need. In the meantime, I have been debating on whether I was doing the right thing. I didn't want him to have to eat differently then the other kids in preschool or miss out on pizza after soccer games. But today I read this article and all the comments after and I see I am not alone & am doing the right thing!
#61 ( Irene)
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I just wanted to add that I was a chubby, healthy looking child with all the typical digestive issues of a celiac. I missed being properly diagnosed as I wasn't presenting with the typical thin body. A percentage of celiacs have a weight problem (can't seem to find anyone to address that). It took me 28 years of poor health to get the answer I needed. Go ahead and try out a gluten-free diet if your child has digestive issues - you may be pleasantly surprised.
#62 ( marla)
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I have celiac and have 3 children that were diagnosed at various ages. One at 5 after suffering severe undernourishment, one at 10 after months of belly pain, and one at 1 year after his first introductions to gluten. They have all followed a gluten free diet for some time and upon accidental exposure all have suffered the Celiac distress.
I agree with what the doc says, however I also believe that restricting a child to a strict gluten-free diet is not a wise decision if Celiac is only suspected and not confirmed.
#63 ( C)
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A great article. I was diagnosed with celiac disease about 2 months after the birth of my first child after suffering constant nausea and vomiting from 2 days postpartum on. I went gluten free immediately upon diagnosis but continue to suffer from delayed stomach emptying although as time passes it seems to be getting better. Nerve damage due to the celiac disease? Impossible to confirm for sure, but my father and grandmother also both presented with nausea and vomiting for years before being diagnosed and then improved on the gluten free diet. I was born in 1969 and throughout my life suffered various digestive discomforts - pain, intermittent loose stools, vomiting in the middle of the night for no apparent reason. The doctors back then told my mother I was just a nervous kid with a touchy digestive system. Could I have been saved years of discomfort and then the horror of being so ill after childbirth had the doctors looked harder when I was a child? I'd say yes. My daughter was also born with a midline birth defect even though I was the picture of the perfect pregnancy (took my pre-natal vitamins, ate great, exercised, zero caffeine, zero alcohol, zero medications, non smoker, etc). Another impossible definite link, but I wonder all the time if things could have been better for her had I not gone through the pregnancy with undiagnosed celiac disease. The what ifs are heartbreaking for me, I'm just so happy that this disease is being recognized earlier these days giving kids a fighting chance! My GI doctor is working closely with me to be sure I'm remaining symptom free and on treating me for the slow stomach as it (hopefully) continues to heal. My daughter's doctors and I are monitoring things closely where she is concerned. I'm determined to keep her from suffering as I have, as are they. Thank you for this article, and thanks to my doctors and my daughter's doctors for their continued thorough and caring approach.
#64 ( siridyal)
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Good advice. And Entrolab.com can do saliva and stool testing so that way you can see if your child has the infamous Celiac gene and just take them off gluten. I'm ordering test next month. I have celiac, and I'm suspecting my son does too. Not sure about daughter, but am now taking her off gluten to make sure she doesn't get more damaged in case she does have celiac....Blessings MOMS! it is a toughy, but worth the battle. I'm smaller then my mom and sister and they are both 5.9" and I'm 5.2"...always constipated, bloated, etc .. not fun to put our kids through...
#65 ( Kelly)
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I too, am very touched by the notion of "preventative medicine". I am the mother of a 9 year old girl hat has suffered with belly aches, diarrhea that was beige, hypothyroidism, and other ailments (sick w/o being sick). She had two endoscopies (one at 3, where the Dr. came out and said she had celiac, but then called 4 days later and said that the biopsies appeared normal) and (one at 8, where the Dr. came out and showed us pictures of the lymphoid hyperplsia on her duodeum). Ultimately, ALL biopsies came back normal. We had a very difficult time, but we chose to "try" the gluten free diet, since that was the cure if she did have celiac. It has been 3 months now, and she has gone from 41 pounds to 46!!! She has not grown that much since her first year of life. I am a believer in the "try it and you'll see". If she gets trace gluten, we know because she wakes up out of her sound sleep, and she sits next to the toilet and waits to throw up---but never actually does. Wholeheartedly, I believe that if you sense it, feel it, or question it, there must be a reason for the wondering if "x" might have celiac. The diet is NOT hard to manage once you start it. You find the "staples" and stick to what you like. I appreciate forums and articles like this that help to open up lines of communication and education in people with possible celiac disease.
#66 ( KATH RENALL)
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Doctors like yourself are a Godsend. Our son is 7 and has been very ill his whole life, constant bronchitis allergies, bladder incontinence, gut ache very thin, pustles skin irritations, up 3-4 nights a week for seven years you do begin to think doctors don't KNOW ANYTHING. Had blood tests and showed up celiac possible we try very hard to stay gluten free, I just found out my levels were raised, I have also been sick all my life and the symptoms got worse through pregnancy, all my children suffer in some health respect we are all going gluten free. Makes sense thank you God I'm not crazy.
#67 ( Kristine Chateauneuf)
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Thank you, Dr. Ford! It is always reassuring and enlightening to read your articles and to know that my decision to be gluten free - after years of severe skin outbreaks, mouth ulcers, anemia and tingling in the hands and feet, stomach aches ... - is valid even if the doctors I see don't agree (I'm still looking for a doctor in France!) Now, my 5 year old daughter is starting to have skin problems like myself. Her pediatrician agreed to prescribe blood tests and we are currently waiting for the results...
#68 ( Justin Adams)
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We just recently had a baby boy. His big sister is 4 1/2 years old and was diagnosed with celiac sprue at 22 months. We had her antibodies tested, and put her on a gluten free diet from the results. She turned around in days. We opted to forgo the biopsy since she made such a remarkable turnaround.
For our newest son, it was important to make the determination if he was at increased risk since it's not conclusive as to whether or not breast milk allows gluten to pass through. So, since we're breast feeding, we needed to know if he was likely to develop the disease.
We had HLA's (Human Leukocyte Antigen) DR3, B8 and DQ2 tested in our son's genome. He came back positive for 2 of them, which put him at a 16X increased risk over the general population. Therefore, we're going gluten free for my wife and son until he's old enough to decide whether or not he would like to challenge the diagnosis.
#69 ( Anna)
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I too have suffered allergies, stomach aches, constipation, etc. all of my life. It was only after losing several pounds in one month, getting dizzy and unstable on my feet, that my oldest daughter insisted that I ask my doctor what was the matter with me. The doctor sent me for barium swallow, which showed some damage to esophagus,then to gastro for biopsy, which of course showed well developed celiac sprue! This was when I was 68 yrs old. The matter of undiagnosable anemia several years ago became quite apparent in retrospect. My other allergies have become rather quiet since I started going gluten-free. Two of my children have autism-spectrum disorders, one with schizophrenia too, and one with aspergers. His daughter is also autistic with casein problems. They have yet to see that it might be a darn good idea to take her off of gluten too. I am now 73 and have osteoporosis, osteopenia, spinal stenosis, borderline diabetes, some blockage of right carotid artery and allergies to three different antibiotics! But I feel fairly well and have been told I don't look my age (which is always nice)!! Thank you for the excellent article.