Q. Your radio show on celiac disease inspired me to drop gluten-containing grains at the age of 38, and I never felt better. Like so many people I had fallen through the diagnostic cracks.
I can trace many symptoms back all the way to my childhood but none of my doctors ever diagnosed what was wrong. I only wish I found out sooner.
I had one close call when I got severe diarrhea, cramps, and gas after eating pizza, but the doctor dismissed it as being an intestinal virus, so did no tests. Is there an easy test for gluten sensitive people? I would prefer not to have any probes in my digestive tract.

A. The expert you heard, Peter Green, MD, is director of the Celiac Disease Center at Columbia University. He told us that over 90 percent of people with celiac disease go undiagnosed. Symptoms often include digestive distress (diarrhea, cramps, gas and floating poop). People with undiagnosed celiac disease may also experience anemia, fatigue, headaches, joint pain or neuropathy. Blood tests that can help with the diagnosis include EMA, tTG and AGA. There is more information at PeoplesPharmacy.com.
Getting the diagnosis often takes a long time. Although doctors recommend testing before adopting a gluten-free diet (because the tests are much less accurate after the patient has been avoiding gluten for several weeks), some of our visitors have done as you did and tried out the diet to see how it makes them feel:
“Last year my brother was diagnosed with celiac disease and I began eliminating all the gluten products I had been eating. Since then I am feeling so much better plus my unexplained headaches are practically a thing of the past. Because of them, I had 2 very unnecessary tests, a spinal tap and a brain scan. Gluten intolerance was never mentioned by any doctor even though I told them I had lactose intolerance for years. My fibromyalgia has also lessened since being gluten free.”
Although the blood tests can be helpful, they are not fool-proof. Another visitor offered this story:
“Are there people out there who have had diagnosis problems?
“My antibodies were positive; my symptoms were textbook and the endoscopy made the gastroenterologist believe that I have celiac–‘the appearance of the small intestine is consistent with celiac.’ But the lab pathology was negative!
“I am suffering from arthritis and other issues that I believe are diet related. Any thoughts?”

With so many other signs pointing toward celiac disease, the pathology lab might have made an error. The doctor should be asked what other conditions might result in the same signs and symptoms, so they can be investigated further.

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  1. JimP
    Reply

    In the “regular” section of the grocery store, you have to watch out for “hidden” wheat. The most common are “modified food starch”, “malt flavoring” and “malt extract”. Unless the food starch specifically identifies a non-wheat source, such as corn or tapioca, it’s probably made from wheat. Malt comes from “malted” barley, which contains gluten. Note that the above items may be present in food where wheat is NOT noted as an allergen, so always read the ingredient list.
    My gastroenterologist told me my bowel biopsy was negative for celiac disease and he didn’t know what was wrong with me. I was losing a pound of weight per week, was having constant diarrhea and was very short-tempered and grouchy. Out of desperation, I only ate gluten-free foods for a week, and was back to normal at the end of the week. (I tried the gluten-free diet because of Peoples Pharmacy shows 7-8 years ago! Thanks Joe and Terry!)
    I’m not as sensitive as some people as I can eat regular oats without symptoms. I have been successful in buying “regular” food as long as I avoid the ingredients noted above.

  2. abigail
    Reply

    Thank you, JBR, for writing in about eliminating all GRASSES as well as just gluten foods.. Definitely something to try.
    For some people who do not have celiac disease it works to limit an allergen like gluten or grass foods to only once a week, but others need to stay off them entirely.
    Let’s keep in mind that most of the allergy tests mention that they have a 10% error rate. If we are testing 200 foods, that can be a false negative or false positive for 20 foods. Eliminating something from the diet for several weeks and then reintroducing it is a good follow up test.

  3. JBR
    Reply

    I am 63 and have had stomach upsets of various kinds since I was a child. Doctors told me to eliminate dairy and substitute soy. I did not get better. Finally a year ago after going through allergy testing I was diagnosed with allergies to all grasses among other things. I totally eliminated all grains (wheat, rye, rice etc., which are all grasses) from my diet and now I feel 100% better. I don’t have to worry about being near a bathroom all day! I only wish I had found out at a younger age.
    The gluten-free diet seems to be a fad right now, but I believe it goes further than the gluten alone. That said, only some people are affected by it. My husband and children are fine with gluten and grains.

  4. fbl
    Reply

    My hubby took the Food Safe test almost three years ago and it has made a huge difference in his life and health. Gluten was a huge surprise. After eliminating gluten and most of his favorite nuts, he has lost weight, sleeps better and doesn’t fall asleep after dinner. Did wonders for his energy level as well.

  5. KO
    Reply

    Starting in grade school I was exhausted, spacey, and had severe sinus allergies. In my teens still exhausted, anxious and spacey I also had severe “growing pains” in my legs. I was always hungry even though I would eat allot of healthy foods. At age 18 I was 5′ 7″ and weighed only 98 pounds, the most I had ever weighed. In my 20′s I started to search for the cause of my symptoms, I was told by many Physicians (20 plus by the time I was 30 years old) that they either didn’t know what was wrong with me and not to worry or that maybe it was all in my head.
    As a young adult I still had all the symptoms from my childhood and more, my growing list included severe depression, severe anxiety, psoriasis, canker sores, neuropathy in my toes and numbness in my fingers, joint issues, dizziness, eye issues, even though my vision was 15/20 (yep, better than 20/20), when I would eat things like pizza I would feel like I had a film covering my eyes. When talking with people I would find myself repeating things I had just said, this would happen many times a day. Almost every day I cried, I was very depressed, anxious and disoriented.
    At age 44 my husband and I moved to Colorado, elevation 8200 ft, so when I couldn’t walk up a flight of stairs without resting before getting to the top I thought it was the altitude. Shortly thereafter I started having pretty severe chest pains, so I ended up in the emergency room where they told me I had acid reflux and sent me home to take medication, which I did not take.
    I knew that was not my problem, so I went back to my regular Physician who did some tests and saw that I was anemic and a few other #’s were off and also I had started having diarrhea and severe gas for the first time in my life (I had always had perfect bowels before that). She suggested we do the Celiac panel, the only # that was slightly elevated was the IgG. So with that she suggested that I have a biopsy, the biopsy’s were all negative. Also, my esophagus was looked at and was declared “beautiful, no signs of acid reflux”.
    I completely eliminated Gluten from my life and started feeling better after several weeks. Unfortunately, due to not figuring out I had a gluten issue until age 44 I also have mild osteoporosis and high fasting blood sugar. I am not over weight (125 lbs) and have never weighed more than 130 lbs in my life. Since my 20′s I have always ran 1 mile a day and lifted weights, without my 1 mile I would not have made it through the extreme exhaustion. It has now been 4 years since eliminating gluten and with time I am feeling fantastic! Until getting off of Gluten I had never had the experience of feeling calm, alert and energetic.
    For most of my life I have had 17 plus health issues happening all at once, thanks to my wonderful Physician I am now “normal” and every symptom except the osteoporosis and high fasting blood sugar are gone!!! Completely gone!
    Here is the list of my symptoms, exhausted, spacey, severe sinus allergies, depression, anxiety, canker sores, neuropathy, joint issues (I couldn’t raise my arms above my head), eye issues, always disoriented, chest panes, out of breath, anemia, osteoporosis, elevated fasting blood sugar, dizziness and psoriasis, I am sure that I am forgetting a few.
    Keep searching for good health, it can take a while to figure it out.

  6. Miguel R.
    Reply

    Google is the best doctor. If you go on a gluten free diet you have to do your homework and learn what to eat and what not to eat. You can’t cheat on a gluten free diet because it will set you back.
    I got relieve of the following symptoms after starting a gluten free diet:
    Depression (strong urge to commit suicide)
    Memory lost/mental decline (had problem doing basic math, recalling basic information)
    Intestinal noises (would wake up and check if someone was breaking into the house)
    Constipation (sometimes laxatives and enema would fail)
    Tooth enamel defect (tips of some teeth had brown spot)
    Dandruff (would use a heavy brush to clean scalp of scales)
    Skin rash on both upper arms (they re-appear if accidentally eat gluten)
    Light sensitivity (have to cover clock/electronic display/smoke alarm light at night)
    Lack of energy (lost will to live)
    Food anxiety (would get scare of food when shopping for groceries)
    Lactose intolerance (flatulence smell was unbearable, even for myself)

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