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

Responses: 23

By

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.

Lupin Flour

Beware lupin flour in Heinz gluten free pasta. I had a terrible reaction within an hour of eating it. Dreadful also bad for some with nut allergy I mean lupin is a FLOWER for goodness sake!
—Guest Maggie Green

newly diagnosed

Hi I have multipull illness I have underactive thyroid I dont produce any thyroid at all. I have depression and just been diagnosed with celiac . I personally have been struggling with sever pain and low back pain too , bloating sickness since I was 3 years old. Im now twenty three. I have been gluten free for three or 4 weeks now after bloods and endoscopy ect. But this week iv been camping again with back aches and bloating alot energy levels are low but thats almost normal for me . Is there anything ells I can do I think im lactose intolerant too so I drink lactoes free milk. Im sure caffeine has a part to play. But anyone ells experience and opinion would be very much appreciated.
—Guest jasmine

Diet

62 yr WM diagnosed 3 years ago. Trying to stay gluten-free having bad rash on elbows, knees and private areas. Bad clear blisters. Have been on Dapsone drug for two years for the rash. Now the drug is destroying my liver. Looking for Help! trlane@3rivers.net
—Guest T R

More than gluten

At 65, I have been 2 years gluten free after a lifetime of health problems. When I first went g-free, a mistake would put me to bed for at least 5 days. I have discovered gluten is just the tip of the berg if you're sensitive. I have problems and symptoms with corn, fresh or popped, corn syrup, all sugars. I can't do packaged cereals because of corn and preservatives. After 2 years of g-free, corn, sugar, chlorine, caffeine, preservatives, all food additives, especially food color, herbicide, pesticide , strawberry, pear, melon and mushroom because of mold sensitivity, I'm doing better. Your body has taken a beating if gluten sensitive, probably no immune system left. Stay away from anything artificial, chemical or processed. Stay away from grains until you are symptom free and introduce one at a time. I don't think we can be simply 'gluten intolerant'.
—Guest Guest Wanda

Learned the Hard Way: It's Everywhere

I have discovered I can get glutened in small bakeries and restaurants heavy into frying i.e. Hooters. The protein does get airborne and works its way into your stomach via mucous--it gets trapped in in your mouth, nose, and throat when you breathe. When you swallow you inadvertently ingest the gluten. Sounds crazy until I was hit with the brain fog after sitting in a Panera Bread (30 minutes) despite consuming nothing. This had happened on more than one occasion before I figured it out. Other sources include shampoos and soaps (who doesn't get a little water in their mouth during a shower plus the protein gets airborne in the steam) hence I went GF with soap, shampoo and toothpaste-big difference. Another tip, I always assume that the outside of food packaging is glutened. I learned the above the hard way ("only" took 2 years w/ frequent bouts of insanity) but since my somewhat obsessive avoidance of gluten last fall I have improved enough to resume my duties as a pilot in the USAF.
—gluted_pilot

sick of feeling sick

I am 52 and was diagnosed with celiac disease 2 years ago. I have felt ill for years, weak, fragile, anxious. I always feel nauseous and seriously am thinking of just not eating anything. So over it.
—Guest Lisa

Surprised To Find Hidden Gluten!

I have been on a low carb diet since 1997 for PCOS and type 2 diabetes. I was baffled when I started having terrible troubles and weight gain. When I was dx'd with celiac I thought I had already knocked out gluten on the low carb plan. I was shocked to find all the ways gluten is hidden in foods -- especially artifical sweeteners and "soy" products. It has been a slow recovery but once I found that you cannot always safely rely on "gluten free" labels I have been doing much better.
—Guest GuestLAW

Glad to see we're not alone!

My 15 year old son is the one dealing with gluten issues, so mama is the one who has also been stressing over his symptoms. He has been gluten free for about 4 months now, but is occasionally suffering from the severe malaise that accompanied his gluten bouts in the past (he doesn't have Celiac, just a gluten sensitivity). It was a relief to see that others have had to "tweak" their gluten free diet to fit their specific symptoms. I was concerned that there was a whole other illness at work. I think he is eating too much gluten free grain...we'll try modifying that and see what it does...
—Guest Jill

Gluten ++

I have found the gluten diet "list" found online to be helpful. Baking powder is on the list and I did experience a terrible reaction. If symptoms remain try removing soy & soy lecithin(everywhere), dairy, and the night shade plants(potato, tomato, pepper, & eggplant). What a difference it made for me. Also, beware of yams! They reacted like gluten! Quite a challenge, even at home! Mara'd
—Guest Mara'd Sjostrom

Gluten free is NOT gf

Arrowhead Mills Gluten Free buckwheat tested unequivocally positive for gluten on an ELISA gluten test kit. Made me very ill and suggests you cannot be sure a product is gluten free if processed on "shared" equipment", even if the packaging claims the product is "gluten free." The irony is buckwheat is a naturally gluten free item, "glutenized" in processing. If only manufacturers would add the phrase "processed on equipment shared by....", on every package, many consumers would be spared illness.
—tgp2312

Still having symptoms

I was diagnosed by blood test a year ago and tried no grains, just almond flour and had no symptoms whatsoever. Then I had to back on gluten for 3 weeks at the request of the Gastroenterologist and had the intestinal biopsy which confirmed the diagnosis of Celiac disease. An allergist I saw just after that said no more nuts, so I am trying Quinoa and rice breads, but I am not feeling well at all. I think I will have to try no grains for a while and take a fiber supplement for bulk. With high cholesterol it is very challenging to eat Paleo, but I love fish and vegetables, so I know it can be done. I will be starting today at lunch. I wish us all the best of health. Jeanne1974
—Jeanne1974

New to all this!

After years of abdominal problems ( gas, bloating, diarrhea), depression and weakness, and 9 months of bed ridden fatigue, hayfever, rashes, polycystic overies and various other symptoms, 2 days ago my mum suggested I could have celiac. I've been gluten free the past 2 days but I still have the bloating and stomach pains with gas. I feel a bit better depression wise and a little more energy but was just wondering if it sounds like I could have it or I have another problem. Does it take a while for the pains etc to stop?
—Guest Kim

Determined

I have been gluten free for four years. It took over a year to get it right in spite of my best efforts. I had to avoid maltodextrin and dextrin in order to be free of symptoms. It was an amazing difference. I avoid all artificial sweeteners because they frequently contain maltodextrin. I also avoid eating more than two pieces of gluten free bread or a handful of gluten free pretzels a day. I agree with everyone about avoiding any grains because they do cause me symptoms if eaten in moderate to large quantities. I find that potatoes are very safe for me. I no longer suffer from headaches, rashes, ulcers, abdominal pain or bloating, neurological problems since I eliminated the maltodextrin and dextrose two years ago.
—Guest Soraya

Symptoms from gluten-free crackers

I went gluten free in 2004, due to Celiac. It took me many months, in 2010, to figure out where I was getting hidden gluten in my diet, that was keeping me sick with Celiac symptoms. It turned out to be some Sesmark rice thin crackers that were labeled gluten free. I stopped eating the rice crackers and the symptoms went away, and never returned. I no longer trust gluten free labels, because I found out the hard way, that gluten free doesn't always mean free of gluten.
—Guest Donnie

So Confused!

I am recently diagnosed and following GF diet well for about a month now. I accidentally ate "real" waffles and have been suffering GI symptoms now for over a week. This makes me question my diagnosis, it seems I should be well again since it has been a week. Has anyone made this mistake and how long to get back on track? thanks!
—Guest Lisa

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