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Readers Respond: Gluten Sensitivity Diagnosis

Responses: 19

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Updated February 15, 2012

From the article: Gluten Sensitivity

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.

Tell Your Story

No wheat or oats ever again!

I spent 9 years going to doctors. I had migraines that felt like explosions in my head, random aches that roamed around my body, hair loss, brain fog, terrible periods. I pooped once or twice a week. I tested negative for Celiac, and two doctors told me it was lupus. Eventually I started getting SO utterly tired 15 hours of sleep wasn't enough. My bf and I would eat and it was like I was drugged. He'd help me up the stairs into bed, and I would sleep for hours. Then, my stomach started to bloat out and it felt like the worst gas ever, but no gas. NOTHING would help it for 8 straight days. I was literally contemplating suicide when I finally decided to try a GF diet, despite the negative Celiac test. In 2 days, my bloat was gone and so was my pain. Within a week, I no longer even needed coffee, let alone naps. Hair's growing back. NO trips to the doctor, NO pain, SO much energy I take Spin class 4x a week. But if I eat wheat OR OATS the belly comes back & I need days to sleep it off.
—Guest nikisoba

After 53 years finally diagnosed

I have had stomach and intestine problems all my life. I went on a Gluten free diet in my 30's and when my doctor found out he had a fit. In my 40's I was told I had IBS. I am always in pain. 3 years ago a Dr. told me there was no such thing as IBS. A wonderful new doctor took my blood the other day and the results came back as Gluten sensitive enteropathy. I can't say that I am happy, but finally it all makes sense since I also have had a thyroid problem since I was 40. My question is I have just started reading up on the diet again and milk keeps coming up. I know when I drink cows milk it hits bottom immediately. What does it have to do with gluten? and can I drink almond milk instead?
—Guest armymom8088

wheater no more

I gave up wheat and sugar on Monday, as a 5 day test. Just 6 days later and I can't believe how great I feel. No more feeling like I have to sleep 12 hours a night. I have energy, happiness to spare. I want to see if the inflammation goes down, so I look forward to the 100 day marker June 1st to see how it's progressed. I also lost 5 pounds this week without even exercising. Last night I made these awesome ginger molasses cookies that contained things I'd never eaten before, like hemp seed, Almond meal, Chia seeds, Brown rice flour, Maca powder. All replacing the wheat flour. And then I ate 6 of them with nonsweetened almond milk and waited! I was like, OK, here's all these crazy new things, replacing what I had eaten everyday, and I totally expected to be laid out, regardless of what I had read. Well, I was happily surprised to have no symptoms at all (aside from feeling perfect). I suffered for so long to wait to make this change, but now I have and it's done! For a long life!
—Guest longlife

Stool test works

My18 yr old daughter lost 20 lbs in 3 months freshman yr of college. At 95 lbs, she could barely eat. After having allergy tests, an endoscopy and seeing 2 gastroenterologists we had no answers....just a diagnosis of depression. Of course she was depressed, she was bloated and constipated and couldn't eat. A blood test & biopsy showed no issues with gluten. A friend told us about having the same issues for years & had a stool sample tested by Enterolabs that showed she was gluten intolerant. My daughter had the same test...same result! She's been gluten free for 4 months and poops everyday, doesn't bloat and she's HAPPY! She's a different person than she was a year ago. It's too bad that her gastroenterologists were no help. We wasted a lot of time with incorrect info. So glad we found an answer on our own
—happympm

Gluten Sensitivity testing is available

I stumbled upon a site that said to get tested for Food Specific IgG allergy tests. Since I worked in a lab, I looked through the Quest Diagnostic Reference Lab book. I was unable to find any. They did, however, talk about IgE's not the only immune response to foods we have. So I went on their website and searched. I ended up finding 68 foods and 8 food panels. The panels are used for testing to see if you are avoiding your IgG immune response to specific allergens. Quest Diagnostic now states the Gluten IgG's and Milk IgG4 tests are diagnostic. This has allowed me to start my own business and help others. Even though the other foods are not considered diagnostic, the elimination of those foods have had outstanding results with our health. I have now reversed over 25 chronic diseases in less than a year of doing this. I also have the ability, thanks to these tests, to reverse a whole lot more.
—Guest SDR WellnessCoach

Story

I was bedridden last July with many symptoms.I had been stereotypical gluten free for years. I stopped eating all grains and was out of bed in a few days!! Non celiac is obvious! Corn,rice, millet, oats also bother me. If wheat, barley,rye abstinence is not working for you, please go grain free. I have lost 40 lbs without dieting and am improving in every way.my staple carb is sweet potatoes. I also avoid potatoes,onions, peppers, eggplant.Buckwheat is OK because it is actually a flower! Do not give up!!!
—Guest chalkster

finally figured it out

had been ill with painful stomach, had rough bumpy skin on upper arms, develop late onset acne, mood-swings, blackouts..esp after a couple of drinks... horrid fat stomach and skinny arms and legs...not selling myself in here...but all this stuff, and endless blocked sinuses, puffy eye-bags....fertility problems ...near death experience giving birth .One day I went to the Docs and he said, "for goodness sake woman, when have you ever felt well.." and yes...I had ,on a holiday to Mexico where I ate only local food. .And the doctor went Ah-ha celiacs disease, he said that made scene of the inflammation and lack of villi %he had noticed years before when I was being treated for stomach ulcers.So of all gluten, am so much better. Years later wake up with arthritis, am crippled>>come of dairy products, cut down on all other grains and do alkaline diet....my goodness, at nearly 60 I have better skin, more energy, slim ,fit and a stable and sunny disposition!!!!! So happy.
—Guest Susan

An oldie with gluten problems

My symptoms began 33 years ago after the birth of my son. He is RH+ and I am Rh-. I was diagnosed 25 years ago, when Coeliac disease was not as well known yet. A friend, who had coeliac disease following her survival of Lassa Fever, described the symptoms to me. I recognized them in myself, and went on what was effectively a stone age diet (because I knew too little about gluten then), and WHEE!! my symptoms were gone! A while later, I went to a doc and he said Coeliac disease was diagnosed via symptomology and / or a biopsy, and I opted not to have the biopsy. Until I learned how to avoid gluten, I noticed that each time I accidentally ate some, I got arthritis in my knees and back. In the last five years or so, I developed lactose intolerance as well, apparently this sometimes happens after being gluten-intolerant for years. In the last year I have been taking astaxanthin, and I have noticed that the lactose intolerance has all but disappeared, and the gluten intolerance is a lot les
—Char555

I was terrified

Aboutbtwo months ago. I was bloated in my hands, feet and face. I could barely walk. I was constipated for days on end with terrible stomach pain. I had skin problems on my legs and arms... The symptoms had been there for years but It got to the point of being so bad I couldn't get out of bed.. The joint pain was awful. After being tested for everything under the sun and coming back with a vitamin D deficiency.. My doctor suggested gluten free. Within two weeks I was back to walking, shopping and thinking clearly. One month later I am back to working, working out and my skin problems cleared. I no longer look like I am having an allergic reaction and I Uhm.. Well I go to the bathroom normally :) I also have energy to spare... I may not have celiac.. But Gluten sensitivity...I'd say so!!
—summers40

Diagnosed gluten sensitive...

but wonder if it could be celiac. I had the celiac panel nine days after going gluten free. All IgA/IgG levels were strongly negative, and my total IgA was low. I accepted the negative test but began to doubt it after more research. I went to a gastroenterologist who did an EGD. The biopsies showed nothing but inflammation in my stomach and duodenum. A couple of months after that, I was saddled with worsening symptoms. These got better as I dealt with the various sources of gluten contamination in my life. I'm very sensitive and have noticed possible reactions to supposedly gluten-free foods. I also have hypothyroidism, the DQ8 gene, possible leaky gut, and possible vitamin/mineral deficiencies (at least before switching to a better multivitamin and supplements). These make me think I could be an early celiac. It'll be interesting to see if more research into gluten sensitivity reveals that those diagnosed with it can have some of these symptoms as well.
—Guest Sarah

ready to give up

Positive blood test neg biopsies 11yrs ago. Debilitating symptoms like the others described. New dr now. Postitive blood tests again. Don't want expense & hassle repeated for nothing. Tried GF diet but hidden under so many confusing names. Getting too sick to leave the house. Ideas?
—Guest confused

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

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Gluten Sensitivity Diagnosis

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