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Readers Respond: Do You Have Gluten Symptoms Despite Eating Gluten-Free?

Responses: 70


Updated February 07, 2011

Some people with celiac disease and gluten intolerance find all their symptoms don't clear up, even though they're following a strict gluten-free diet.

Although other medical issues obviously can play a role, a major reason for continuing gluten symptoms in people following a gluten-free diet is the tiny amount of gluten still present in foods marked gluten-free.

Have you continued to suffer from celiac disease symptoms despite a meticulous gluten-free diet? Have you had gluten symptoms from any food marked "gluten-free"? Share your story.

Tell Your Story

So tired and sick feeling all the time!

I've been gluten free for 8 yrs now, but still feel horrible all the time, rly dizzy bad headaches, nausea, rly rly fatigued.. I've been to the doctor for almost every test, but they haven't found anything besides celiacs..I'm so so frustrated.. I just want to feel better! It's been hell since I was 15 and now am 33 years old and it hasn't got any better.. Someone pls help!!! I can't work because I'm always sick feeling.. I don't know what else to do??! I've been having rly bad headaches and just sick feeling, the chills the sweats. Rly bad pressure in my head and ears.. Is it something else? Or celiacs? No doctor takes me serious because they can't find anything wrong, I've just had enough I'm depressed and tired of being sick and tired.. Pls help!!!
—Guest Janine reid

Gluten and dairy intolerance

Ya'll I have always been such a healthy person until this past Christmas I came down with this awful stomach virus that made my immune system drop super low, then I had a root canal again making my immune system drop because it was trying to fight off the infection. Since then after I eat i fell nauseous, bloated, light-headed, dizzy, my limbs go numb, I have trouble thinking. I have recently started the Gluten Free diet I've been doing it for a solid week and still feel crummy sometimes still after I eat. I AM SO TIRED OF THIS :(
—Guest Tara

Sweet T

I've been gluten free for over 15 years. I was told I got the genes from both parents, they are carriers they don't have celiac. My other siblings don't have celiac either. This disorder has caused so many other health problems and my GI track is a train wreck to say the least. The only good thing celiac has done for me is the weight loss. (approx. 100lbs). I wish the FDA and the Medical establishments would do more research to find help for anyone with Celiac, or in my case Refractory Celiac. My prayers are with anyone who has this, as I call it the gift that just keeps giving, only the gifts aren't usually any that you'd want.
—Guest Tracy

Oats too!

Going GF has given me my life back. I went crazy with certified gluten free oats the other day, though, and had a full blown reaction just like if I'd eaten a loaf of wheat bread. My belly blew out until I looked about 4 months pregnant. Awful stabbing pains to where I almost couldn't walk. And then the complete utter exhaustion that takes days to sleep off. No more oats for me. I got bentonite clay to drink when I gluten myself, and L-glutamine is supposed to help too. I incorporate coconut oil and sulfur powder into my daily meals also and I'm feeling amazing. If you're still feeling bad, do a search for those ingredients and maybe they will bring you relief too. Best of luck to you all.
—Guest nikisoba

Other Intolerances

The issue with celiac disease is that eating gluten damages the lining of your stomach. So even if you stop eating gluten, your stomach is still not in a good condition and so is therefore unable to process foods as well as most people's. It's likely that if you ate gluten for some time before being diagnosed, you will be intolerant to other foods, due to the previous damage. After a while, these symptoms may go away. However, there are also ways to build up the stomach lining quicker. For instance, you can take a supplement called L-glutamine.
—Guest INR

I am hungry!

Diagnosed almost a year ago. I went GF right away and felt good for a week, then my horrible symptoms came back. I realized with no help from doctors, that I can only eat fat free chicken breast - veg diet, veg diet cage free eggs, zuchinni, spaghetti squash, Not from concentrate OJ, Lemon tea, Honest tea, water, Wild fish only. I use olive oil and salt/pepper/parsley. Yep that's about it. When I try new foods, (gluten free) boy, it's like I just ate a pizza pie. Which I WISH to have. So we all get diagnosed and then end up not being able to eat anything. Not even any of the gluten free stuff they offer, not that I want it - it is so bad for you and fatty. But, it would be nice to have somethinig once in a while the way I did before I got diagnosed. Why do doctors not know that most Celiacs end up having trouble eating a lot of other foods once being diagnosed. I just don't understand. This is so weird...Oh - I can have wine and champagne, thank goodness, I miss my beer. xox
—Guest Annie

Still Get Bouts of the Big D

Been eating gluten free for 3 months and initially got relief from diarrhea. But lately it comes back about every other day or 2, and BM changes from one time to the next in same 24-hr day. I am vegetarian 20 yrs so meat is not an issue. I pitched Morningstar Farms as contains wheat gluten. Anybody else seem to have a problem with flax seed? I read labels and look things up and do NOT ingest large amounts of flaxseed. I only add 2 teaspoons (less than 1 serving) to Cream of Rice b/c that product has no fiber. Very frustrating-walking 1/2 mile to bus stop for work, etc. Also part of intestines surgically removed several years ago. No, I was NEVER told of any potential residuals from this surgery-good v. bad bacteria, malabsorption, etc. Less than professional Drs. in my area. Any input re gluten and D appreciated.
—Guest Frustrated Guest

Not Feeling Well...

I suspected Gluten as the source of my headaches, brain fog, joint pain, feeling like I couldn't get out of bed, extreme irritability, and extreme sensitivity. I went GFree last summer for 3 weeks and felt awesome (second time doing this...I don't learn easily). Then gluten crept back into my life. So, I went back on gluten strong and called a GI to start testing. I have celiac. My problem is, this time being GFree is only minimally helping. I still feel and look pretty bad and it's been almost a month and a half. Reading all of the responses makes me realize I need to be more patient...and more steadfast. Before diagnosis, my GFree experiments were 100% sans grains and processed foods. Since diagnosis, I've done mostly no grain/no processed foods, but have also tried out some GFree pizza (packaged), and experimented with GFree baking. I need to stop any GFree pre-made stuff, and skip the rice fours when baking (subbing lower glycemic flours). Gluten is just one culprit for m
—Guest Laura

Gluten-free but still get glutened

I feel so much better since going gluten-free, but occasionally have a round of a gluten reaction. I've learned to read all the labels because gluten is hidden in different names. And, when I do react to something that is supposedly gluten-free, I can tell you for a certainty that it is not gluten-free. It has been contaminated with gluten somehow despite the label. Just don't eat those products. Note: It has been mentioned by some that when they have been gluten-free and then get glutened somehow, that they react much more severely. That is a normal reaction I understand. From the "Gluten Summit" it says: Autoimmunity with a Vengeance: Inadvertant exposure after a period of time being gluten free: Symptoms are more severe than before. Memory lymphocytes make many times more antibodies than before. Sever immune reaction equals severe symptomology. Also, the immune system may attack additional tissues of the body not previously affected, such as joints, thyroid gland..
—Guest S Barringer

Apple Vodka

I was diagnosed with Celiac Disease four years ago. It has been a learning experience to say the least. I have found that rums, even spiced are okay as is Southern Comfort. Last fall I tried an apple vodka made locally mixed with apple cider with no ill effects. It is made by Beak and Skiff Apple Farms, Lafayette, N.Y. 13084. If you contact them they can tell you who sells their products. I think they will also ship to your location. It is 80 proof with 40% alcohol by volumne. I find it is a refreshing drink alternative to the other available products.
—Guest Rick

Gluten Free Products

I have not read all of the post and this may have been mentioned. My experience was that I was exposed to gluten in hair dye, conditioners and shampoos. Avoid Hydrolyzed Wheat Protein and keratin products.
—Guest Jeana

Mostly free of gluten attacks

I was tested a couple months ago and they show no wheat allergy, no stomach damage, nothing. So, my doc thinks I have Non-Celiac Gluten Intolerance. It's been hard, but I'm finally coming to terms with it. I have 2 issues that affect my digestion: 1. Obviously wheat. 2. I had my gall bladder out years ago. For those who don't know, your gall bladder helps you digest fat. Since I don't have one now, anytime I eat a meal heavy in fat, I get diarrhea-like symptoms. I'm 43 and have been dealing with digestive issues most of my life. When I went GF, many of my symptoms cleared up in a single week. I discovered my GERD is largely due to all the processed junk I used to eat. At first I thought it was due to the gluten, but as I discovered GF alternatives, I started having problems again. Cutting out the highly processed junk has my GERD-free for the first time in over 20 years. However, I do still have attacks that I can't explain. But life is still sooooo much better than it was!
—Guest LadySciFi

Gluten and Parkinson's

I have not been diagnosed with Celiac's however I have been diagnosed with Parkinson's disease. After following a gluten free diet for two or three weeks my parkinson medication gave me such side effects (after taking them for almost a year) that I stopped taking them and have no symptoms or Parkinson's disease what so ever. So much for the medical profession.
—Guest Teashe

Getting more sensitive

The longer I'm gluten free, the more sensitive I'm becoming. I just discovered that my infant son's shampoo/body wash has gluten, so every time I kiss him, I am exposing myself to gluten. We also have a 3yr old, and it's next to impossible not to have cross contamination on a daily basis. How do I tell my sweet girl she has to scrub the crumbs off of her mouth before I can kiss her?
—Guest Stephanie

Gluten Free isn't easy

For most of my life, I was gassy with frequent migraine and bad acne. In January, I and my husband shared a bowl of spaghetti that left me with severe cramps, diarrhea, and vomiting all night, followed by five days of fever, chills, and migraine. A few more episodes convinced me to cut bread and pasta from my diet. I became more sensitive over the next few months and went Gluten-Free in June. Despite the GF diet, I was still having occasional fever, chills, and migraine. As a vegetarian for the better part of 2 decades, I'm accustomed to reading food labels. One week, it was the gluten-free brownie bites. Another week, it was 3 chips I from a coworker (MSG). A third time, malt flavoring. The last time: coffee from a fast-food restaurant. My career does not allow me to prepare my own meals often, but I stick with grain-free, raw stuff whenever I can. The gas, migraine, and acne are all gone!
—Guest JD

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Do You Have Gluten Symptoms Despite Eating Gluten-Free?

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