Readers Respond: Gluten Sensitivity Diagnosis

Many people are diagnosed with gluten intolerance or gluten sensitivity after all testing for celiac disease proves negative. In some cases, positive results on some less specific celiac disease blood tests can spur a doctor to provide a diagnosis of gluten intolerance, even though that diagnosis is not accepted by many physicians.

In other cases, people may diagnose themselves based on response to the gluten-free diet, or receive a diagnosis through Enterolab, which tests your stool for antibodies for gluten.

How were you diagnosed with gluten intolerance or gluten sensitivity? How long did it take? Tell your story.

this sucks

I'm a student at the Culinary Institute of America, and I was taking the required nutrition class six months or so ago and we were talking about celiac disease, and I was like "whoa, all those symptoms kind of describe me" so I stopped eating gluten for a few days to see what happened, and I felt like a million times better. I don't seem to be THAT intolerant of it, at least not yet; all it does is make my stomach feel terrible. Or maybe it does other stuff that I'm just not noticing, but my stomach had always, always hurt and I kind of just assumed that was how everyone felt all the time too. I was just diagnosed with MS about a year and a half ago, and I all the autoimmune diseases are correlated, so I guess it makes some unpleasant kind of sense. Too strong for my own good? And I always had the line cook's skepticism and disdain for customers who try and change the menu for whatever reason, which I now realize is way ignorant and unempathetic (that's a real word!).

—Guest bert

There IS a test for gluten sensitivity!

My son was diagnosed with Non-Celiac Gluten Sensitivity last week. The only lab that does the test we did is Cyrex Laboratories. (No, I'm not affiliated.) It cost $225 ($288, less intro discount) and the lab requires the patient to pay directly. It's called Array 4: Gluten-Associated Cross-Reactive Foods and Foods Sensitivity." It tests 24 different foods. My son was not only sensitive to gluten, but his "cross-reactors" are dairy products, oats, and millet. He also reacted to eggs and soy. He needs to avoid all of these foods for the rest of his life (NO CHEATING!) with the exception of eggs, which he may eventually be able to eat again, after we heal his leaky gut. He has ADHD and is doing a program called Brain Balance. If you've tried a gluten-free or even grain-free diet and it has not brought the results you'd hoped for, I encourage you to have this test done. It's quite likely that you have cross-reactors to the gluten sensitivity, which you'd need to avoid as well.

—Guest R.H.

Finally, wheat-free is the answer!

Ten years ago, I met my wonderful, health-minded husband who encouraged me to begin eating more whole grains, especially wheat. I had eaten multi-grain bread without any problems, so I tried whole wheat pasta, bread, crackers, cereal, etc. I began to experience epigastric pain that felt like chest pain. After many cardiac and gastroenterology tests, I was treated for reflux. Six years later after moving to Hawaii, I had a recurrence of bloating and pain and sought out a new gastroenterologist. Endoscopy was negative, but I did notice a comment on the report about "blunted villi." Three years later, after a weight-loss diet exclusive of bread and pasta, rice, etc., I had a whole wheat pasta dish and before I ate half of my plate, I doubled over with pain, had diarrhea and my stomach stayed bloated and painful for more than a week. When I saw my primary doctor, I told her what happened. My blood and genetic tests were negative, but I'm wheat, medication and pain-free! Just intolerant.

—tutunene

Remarkable results

I have been gluten free for about 7 weeks. I went on the diet because I have had intestinal problems for a long time, changed doctors, and he had suggested it. Concurrently, I was diagnosed with temporal lobe epilepsy, after over 2 years of what I thought was fainting, but turned out to be seizures. I did not go on the gluten-free diet because of seizures, but only to try to curb the intestinal problems, which are always very severe when I have an episode. Results: within 2 weeks, no more intestinal problems (pain and diarrhea completely gone) and no more headaches or migraine symptoms, which had been severe. Within 3 weeks, aches and pains in joints (which I had simply thought was age--I am almost 60) are gone. I continue to slowly (and happily) lose weight, am never hungry or tired on the diet, and HAVE NOT HAD AN EPISODE (except for a very minor one when I accidentally ate gluten) since being on the diet. I am overjoyed! We will see: perhaps I won't need epilepsy meds.

—Aseneth1

Gluten sensitivity

As a physician who suffered with 5 years of abdominal symptoms, (mainly pain and alternating diarrhea, constipation blamed on IBS) every test, including biopsies, all negative, this disease entity exists. I also have issues with another autoimmune disease. I put myself on a gluten free diet and I follow a gluten free modified paleo diet. Within two weeks, abdominal pain went away. In 6 months many other issues also disappeared. Four years later doing well, and if i eat gluten by error, it is amazing how quickly my body recognizes the protein and abdominal symptoms recur. There is no one reliable test....best bet..go on diet, no cheating, and see.

—anonomoose

wobbling 8

Now it's 25th.November.About 7 months on gluten free diet.I don't feel any better at all and am just the same as my last post.Still sticking to diet and still hungry and fed up and tired all day.My legs ache a lot now it's the muscles like a dragging pain that keeps me awake.I am just sick of it all.And head thumping...the only upside is I don't do as much head nodding which I did quite a lot.I am glad a lot of you are better gluten free I wish I was!My walking is worse than ever now and I can only write a few words but at least speech okey and got me telly! Seehow it goes eh.

—Guest marie cooper

Diagnosed as Gluten Sensitive

11 months ago I was tested for Wheat IgG & Barley IgG (I don't knowingly eat rye so why bother). The tests were performed @ Quest Diagnostic (a reference lab used by the hospital I work for). I went GF a week before testing and had major improvement in my health which is why I got tested to confirm. That was 11 months ago. Now I am free of Acid Reflux, Acne, Joint Pain/stiffness, Hyperlipidemia, SOB, and numerous other health issues. The 1 question I have is according to the tests I had, it should be called a Allergy. Why isn't it? My immune system is reacting towards Gluten & Quest calls those tests Allergens. I would also like to add, my wife who is "lactose intolerant" also tested positive to a Milk IgG Allergen (Wheat & Barley too). The health field might need to start to reconsider the meaning of Allergy. There are at least 2 types of reactions, IgE & IgG. IgG meaning Delayed Response. Which people experience to medicaton & insect bites quite often.

—ScottR13

What happened?

I was diagnosed with Celiacs 3 years ago. I can tell you I have had two blackouts when I accidentally drank alcohol containing gluten. I drank two drinks and lost half the night. It was scary the next day and thought possibly I was drugged but then a year and a half later it happened again. Now I am super cautious!

—Guest grainalcoholblackout