In brief, has anyone else had sores in the esophagus and small bowel show up in the endoscopy? Are these potential signs of celiac disease/gluten intollerance as opposed to reflux? For more details, read on. Otherwise, I'd just love to know I'm not crazy to think that my doctor may be wrong.

I've been reading this site for months. We just had an endoscopy and biopsy on my 27-month old daughter. The Ped GI sees no evidence of celiac disease under the microscope and discounts my 6-week gluten-free trial that put 2 lbs on my daughter. My husband wants me to keep working through with the the doctor to uncover the cause of her failure to thrive, so she's now on 3-4 months of Prevacid for the supposed reflux (no symptoms of food reflusal, spitting up, etc., just a sore/"cold sore" in her esophagus and her small bowel). The doctor does not want me to try the gluten-free diet again until after this trial on Prevacid because of "the social stigma" and the potential "malnurishment" of a gluten-free diet!

I'm convinced that it is gluten intollerance because of the 6 week gluten-free trial that put so much weight on my daughter. The genetic test came back negative for celiac disease. Food allergy tests came back negative as well. 72 hour fecal fat test also negative, though one spot fecal fat was positive. We haven't been able to afford the test through Dr. Fine, but hope to within the next couple months.

I'm so grateful for this website!

There is no true potential for malnourishment on the gluten-free diet. That's an appalling untruth that circulates a lot in the UK as well.

I didn't think of eating millet or chickpea flour till three years ago, and more green veg makes up calcium.

Reflux is a celiac disease symptom. I don't know the pills you mention and wouldn't dissuade anyone from taking any pills but if it is an antacid, some types of antacid have the opposite effect to what is needed, which is more stomach acid to digest better.

I don't know what is the most relevant intervention for a young child, try the children section of the forum?

From age 5 years to almost 30 I was underweight and emaciated but since then have become overweight. Durung childhood I only put on weight because I put on height. My folks were at one time in some kind of trouble, suspected of undernourishing me.

So often one finds one doesn't get a celiac disease diagnosis because one doesn't have "classic" symptoms. At the same time you are among the many families where they don't explore that possibility EVEN THOUGH there are the classic symptoms present.

Knowledge about celiac disease apparently only started to become disseminated several years after I was born, present doctors have only ever had an early version of it at medical school and then only if it appealed sufficiently to their far older tutors. In 50 years doctors will be where the patients are now.

I would strongly suspect any doctor thinking a gluten free diet makes one prone to malnourishment is on the wheat industry's payroll. That is ridiculous. Just take a look at this chart which talks about the nutrients in quinoa (a gluten free grain).

http://quinoa.net/Nutrition_Facts/a_a_quinoa_nutri.jpg

Anyway, I initially read your post because you have my mom's name, well, spelled slightly different. But caught my eye.

Take care

Stephanie

DianeByrd

Question 1: Did your child's 6 wk gluten-free dieting directly precede the bloodwork and endoscopy? If so, that possibly made those tests invalid.

Question 2: Did the gene test check for the non-celiac disease gluten sensitive genes or just the usual suspects, HLA-DQ2 and DQ8? Enterolab does check for these other versions. (I'm HLA-DQ1,DQ1 and do have gluten sensitivity per Enterolab and per dietary testing, but have low genetic probability of developing damaged villi; nonetheless, my symptoms include osteoporosis and anemia).

Suggestion: Wall Street Journal today (Oct 10, 2005) has a featured health article regarding reflux highlighting some concerns around "treating the symptoms". (Unfortunately they did not mention gluten as being a possible cause.) You might want to read that article.

Comment: I personally think endoscopies are way overrated since they are mostly looking for actual celiac disease, "the tip of the iceberg", instead of general gluten sensitivity. I would trust dietary results first. There are reports that non-celiac disease gluten sensitivity can cause nutrient metabolism problems even when there is no detectable intestinal villi damage.

Comment: Sounds like your dr is a little confused re celiac disease and gluten-free as to which causes malnutrition

Hope this helps and you find a solution soon.

George

Doctors are wrong at least as often as they are right. In the interest of your health and that of your family you need to question medical opinion - and often. This is especially true if what your are being told doesn't make sense or conflicts with what you have heard or read elsewhere. Most everyone of this forum has at least one doctor horror story to tell.

What a pity to start such a small child on a med like Prevacid. Your daughter is sstill very young to expect reliable test results - i.e. blood work. Also she might not yet have any intestinal damage. Some people never have any.

Go the Enterolab route as soon as you can. "Social stigma" my foot! gluten-free diet is a very healthy diet and does not deprive of anything that your body has to have. The calorie count does go down but there are ways to counteract that.

Once her condition is determined, maybe you need to consider another doctor. He is not as bad as most but you may be able to do better. Claire

RE: Question 1
She was on the gluten-free from mid-January till the end of February. She has been on a gluten-free challenge ever since. The endoscopy was performed September 2nd.

RE: Question 2
The test was done by Prometheus and only mentions HLA-DQ2 / HLA-DQ8. I appreciate the tip. I'll ask about HLA-DQ1. Is Entero Lab the only one that tests for this? I need a lab that her doctor will use and our insurance will cover.

I would love to read the Wall Street Journal article. I'm not a subscriber. I'll see if I can get it at the library.

Thanks for all the input.

If she's not being paid off by the wheat industry, she at least has a prejudice against parents who would consider a gluten-free diet without "an objective diagnosis". Thanks for the link. I love quinoa! I've printed it out for the doctor.

I am horrified at the statements and plan of action by your daughter's Dr. You are right to question the wisdom of this Dr.
Malnourishment from the gluten-free diet????? PUHLEEEZ!!!!!! My daughter was severely underweight, failure to thrive, reflux, (projectile vomiting) diarrhea all the time, from the time that gluten foods were introduced til she was 3. Testing was inconclusive at best because they didn't run the full Celiac panel, and the idiot Dr. was very dismissive of me even after I told him that I had recently been dx with Celiac. She even had symptoms from birth even though she was breast fed, probably because I still had gluten in my diet and it WAS getting through the milk to her.

Anyway, with the support of her pediatrician, we tried the diet and within a few DAYS I had my child back. Today she is a very healthy 5 year old and is doing great on the growth charts, at her last well check up, the Dr. couldn't believe how healthy she is. Most children aren't doing as well as my gluten free child! I do not have a proper dx for her according to the current Dr., but they at least acknowledge that she needs to be on the gluten free diet. They still refuse to admit she has celiac, but hey, that's ok, as long as she's healthy on the gluten free diet, I'm not going to worry about what the medical community thinks.

I feel like I have to mention, her pediatrician that supported me in trying the diet, has since retired to stay home with her own child and we were forced to find a new Dr. I'm still looking for one in our area that is knowledgeable about Celiac and Gluten intolerance

I apologize in advance. I know this is going to be a long post. You really hit about five nerves. I'm so angry that I don't even know where to start here.

First things first. You need specific gene testing. You need to know what she has, not just what she doesn't have.

You only have to do it once, forever. My husband has DQ2 and I have DQ8 and our daughter has neither of these, but a double dose of DQ7 and a negative biopsy. My daughter has the worst symptoms of all of us, including neurological. The gastro that did her biopsy sent her home, "nothing wrong with you". According to Dr. Fine this genotype is associated with very high anti-gliadin antibodies, neurological problems, but may never have eroded villi. In other words, she could suffer for years while the doctor’s fight it out whether she should be gluten-free or not. I don't think you get points in heaven for dying with your villi intact. But I have found several recent journal articles which suggest that DQ7 may be under-investigated, and may be a third celiac gene.
“Our data do not support an earlier finding that HLA-DQ7 is a non-susceptible molecule.” http://www.clinchem.org/cgi/content/full/44/8/1755

The point is that all of us are dealing with a wide continuum of disease syndromes, symptomatic and asymptomatic, that the researchers are still arguing about and probably will be for decades. The clinicians range from completely clueless and thinking they will never see a case of this in their career, to arrogant enough to think that anything they read ten years ago, or last year or even as recently as last month was the final word on the subject. Only a few enlightened ones understand the lifetime nature of this, that the information is changing rapidly, much less that it’s contributing at some level to the health problems of greater than 50% of the population.

Which leads me to the real anger: I do medical autopsies for a living. 95% of what we see on the morgue table is some form of suicide by fork. Some were deliberately ignoring their doctor’s advice. Many more were following it faithfully. Most doctors have got a lot of nerve even suggesting that they’d know a healthy diet if they fell on it. The doctor's have been criminally ignorant and their track record in the whole area of nutrition is abyssmal. I was a preemie who struggled to ‘thrive’ for at least the first five years, in and out of the hospital. By then, I had developed into a ‘picky eater’. This drove the four adults that I lived with crazy, in large part because they were pressured by the doctors to ‘feed me better’. I developed a strong will. Get this: for three years, starting around age three, I would only eat corned beef hash. Apparently, I was willing to starve or eat corned beef hash, period, and kept it up against four adults for three years. This has been a funny family story for my whole life. It’s no longer funny to me. Is it possible that I found a gluten-free meat-and-potatoes diet to control my own symptoms?

All of this information is expensive, confusing and some of it has a short shelf-life and will be updated many times in you child’s lifetime. Count your blessings. You will have more information and more tools to decide what to do about it than anyone on earth has ever had before. Don’t waste that power trying to get a perfect answer from any doctor, period. They are advisors at best, and you and your child have to live with any answer you commit yourself to.

Make use of all that power at your fingertips to help you, like these support groups. And other tools. I have a lot of damage to undo. Like my bones falling apart. So maintaining a reasonable weight is just the beginning. I need and your child needs excellent nutrition. I found a fabulous tool for evaluating the diet you are actually eating. It’s a free website: www.nutritiondata.com. Start with the “ND Quick Start” in the upper left hand corner, and go from there. It is hands down the most powerful tool for creating a balanced, healthy diet around any restriction that I’ve ever seen, and I’ve evaluated lots of them. The nurse’s I’ve shown it to all agree with me and are starting to drag their nurse friend’s down to get me to demonstrate it, because they all what to improve their nutrition. Denial about our own poor diets is rampant among health professionals, especially doctors.

Diet is very much an issue of culture. We were taught to eat grains, and don’t know what a healthy diet looks like without grains. The doctor’s don’t either. So many won't even suggest gluten free because they can't stick to a healthy diet themselves. The single most important thing to remember is that grains are not necessary to a healthy diet. Simply substituting one grain for another, gluten-free or not, is not making a healthy diet. Focusing on one nutrient, like protein that is already consumed to such excess in America that our kidney’s are dying faster than we are, isn’t making a healthy diet either. Addressing ALL of the health promoting nutrients that are needed is the only way to make a healthy diet. We need help doing that, especially if the culturally approved choices happen to be problematic for us, like gluten and casein. But www.nutritiondata.com is not biased, it just crunches the numbers for you with one click. If there are weaknesses you’ll see them. Another click will bring you pages of specific choices that will fill the gaps. If one day is a little weak in one area, emphasize it the next day or two.

It also helps to have the advice of a dietician that really “gets” gluten-free. Live one’s are rare, but fortunately some great ones have written good books that help: “Going Against the Grain”, “Wheat Free, Worry Free”, etc.

My parents, both medical professionals, did one thing very, very right, even before this kind of information was available. On a very basic level, often in spite of themselves, they taught me to trust myself, eat when I was hungry, sleep when I was tired, listen to my body. Genetics do not change. Symptomatic or not, active or not, it will never be a GOOD IDEA for anyone in my family to eat gluten in any amount, period. But here’s the good news. If I learn, and it will be a long curve, to re-create my eating habits for good nutrition, I won’t just avoid celiac and it’s complications, I will also beat 90% of everything is killing the whole country. Eating fruits and vegetables, not grains or meat/beans are consistently associated with protection from disease from ALL causes.

My family tended to live to a ripe old age when they lived in isolation, ate the corn and beans and meat they raised themselves. The trouble started when they came out of isolation and starting buying their food in grocery stores. If I learn to choose wisely, I can turn time back to my grandmother’s generation and make mine a ripe, healthy old age. And if I teach my children and grand-children we'll outlive even the oldest of the old-timers.

Last but not least, there’s Bernie Siegel. Cancer surgeon that noticed that some of his patient’s survived while most didn’t. Same cancer, same surgery, similar treatments. He started to ask the survivors what they were doing. Eventually wrote “Love, Medicine, and Miracles” and others. One of my personal heroes. This has always struck me hard, from the first time I read it and every time I have to face a medical challenge: He noticed that for the survivors, the doctor-patient relationship was usually judged as poor by the doctor-in other words the patient’s questioned their doctor’s advice constantly, often choice diets, supplements, exercise regimen’s, etc. that their doctor’s didn’t approve of. Sometimes they refused treatments or disregarded diagnosis. Their general attitude was “this feels right to me”. So they questioned a lot and then committed themselves to courses of action on their own recommendation, sometimes in disagreement with their doctors. But, even more striking, they were willing to re-examine everything again, over and over, when new information was available and change direction and their commitments accordingly. This is good advice for coping with any medical condition, commit yourself when you need to, but change direction when you need to.