There are devices that purport to detect gluten....but it involves putting a small sample of your food in the detector, so if it actually works it only detects what's in the sample you put in. Most celiac specialists don't recommend them.
My kid has had celiac for 20 years. It is not that hard these days since gluten free products are so accessible. (Canyon Bakehouse has the best bread.) People don't understand it and think it is an allergy. This works okay though in restaurants. We seek pizza only from restaurants that have a separate oven (they could also use tin foil) and tell servers NO cross contamination. Again, they are thinking of anaphylaxis and that is just fine with us.
It is necessary to check medications for hidden gluten.
There are websites with lists of ingredients that may contain gluten (maltodextrin, caramel color many others.). Sometimes a product with maltodextrin will specify it is made with corn, not wheat.
It takes awhile to heal after diagnosis and some food allergies (to dairy) went away in time,
Yes maybe twice a year some take-out or bought food contains a tiny amount of gluten and my kid gets really sick. We know it can be microscopic! But overall they do not find celiac to be limiting. Friends are conscious of it and are really considerate in what they provide for meals.
There is a restaurant in Inman Park in Atlanta that is completely gluten free called Mediterrania. My daughter has celiac and ordered their gluten free turkey lasagna and caramel pecan pie for Thanksgiving. It was delicious. also Carbanaut Breads Re good. They are in the freezer section at Sprouts and Whole Foods. Heat the bread for 20 secs in microwave. I buy the seeded bread. Publix makes. Delicious chocolate torte that is gluten free.
My son is 6 months into his Celiac diagnosis. He is dealing with it as well as can be accepted but it really is a lifestyle altering change . Following the regimen is manageable at home but travelling very unnerving . We are researching new ways of determining if there is gluten in the food you are about to eat by using some gluten detector if there is such a thing .
There is a site The GLUTEN FREE RESEARCH GROUP GLIADIN ….but after looking more closely at this wondering what else is out there
Any thoughts on this ?
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
Having Celiac myself I do continue to have stomach issues. I take Dapsone for another condition caused by this which has been under control since I am gluten free. Celiac fog yes is still prevalent but only slightly. I feel 100 times better now. My blood work has never been fine though. My IgA is off the charts but that is due to SMM and having celiac together.
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
I don’t have celiac disease - but I am gluten intolerant and have miserable side effects if I eat anything with gluten. I have other food intolerances as well- I cannot eat dairy, or nightshade plants like potatoes and tomatoes and bell peppers. I find that I feel better if I also avoid all grains- corn, rice, rye, etc.
If you try an elimination diet you will be able to see which foods cause unpleasant reactions for you. I have a limited diet but it is worth sticking to it for me since I very rarely have intestinal problems now and I feel good most of the time. After several years of feeling crummy I am happy to stick to a diet that keeps me feeling good.
I wish you good luck in finding a solution that works for you.
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
Think of what might have changed after 6 months, your food choices, maybe stress on the body (virus or trauma).
Many of us can’t tolerate oats, even the safe ones. Why I don’t know, the bad grains of wheat barley and rye turn into …’and sometimes oats’. Beans can be tricky when healing, some are rotation crops that include the bad 3. Cross contamination is a thing, knowing the facilities that products are processed in can be essential to figuring out a culprit.
The one mistake we all make is thinking gluten free junk food is okay. Sure it might not affect us right away but the thing is we need very nutritious foods and lots of it to heal years of villi damage.
Food becomes our medicine, it can take the joy out of life a bit, but it is a noble path to be on. I am especially strict, I only eat foods I have endlessly vetted and prepared in my kitchen by me.
All of my kitchen everything got replaced. Pans, dishes, utensils…no plastics. Only safe foods are allowed in my house, nobody has an issue keeping me alive and well.
I pretty much eat foods that are not processed, real food meant for humans.
All of this took awhile to figure out, with the hundreds of symptoms of celiac we all take a unique path. Some can eat out and not feel symptoms or damage, but it is there more than likely. It is important to not judge foods by how we feel after eating, the symptoms might be subtle. Villi damage really cannot be seen, but it happens whether we acknowledge it or not.
You could also be gluten sensitive (along with celiac sprue) which opens up questioning gluten in all grains.
Be patient with yourself, be diligent and remember there are much worse autoimmune diseases, this can be quite easy once it is figured out.
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
I have celiac. I was diagnosed with hypothyroidism as well. I had the same symptoms and went gluten, dairy and sugar free. I felt fine for a while and then my gastro issues became worse. I cut out all high FODMAP foods. This worked for a while as well. I began to add certain foods back into my diet and the symptoms unleashed on me. I was then diagnosed with Autoimmune Pancreatitis. Steroids helped my symptoms along with Rituximab infusions. Request an igG4 blood test for AIP.
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
Several years ago I attended a health library presentation on celiac disease. The specialist doctor giving the presentation gave this interesting example: She had a patient that was doing everything right but was still having problems. They finally determined that a multivitamin this patient was taking had gluten in it, and this proved to be the source of their problem!
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Thanks so much, i may resort to bringing a sniffer dog to the restaurant. That would go over well. 😂
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2 ReactionsActually, there are service dogs trained to detect gluten.
There is a restaurant in Inman Park in Atlanta that is completely gluten free called Mediterrania. My daughter has celiac and ordered their gluten free turkey lasagna and caramel pecan pie for Thanksgiving. It was delicious. also Carbanaut Breads Re good. They are in the freezer section at Sprouts and Whole Foods. Heat the bread for 20 secs in microwave. I buy the seeded bread. Publix makes. Delicious chocolate torte that is gluten free.
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
Having Celiac myself I do continue to have stomach issues. I take Dapsone for another condition caused by this which has been under control since I am gluten free. Celiac fog yes is still prevalent but only slightly. I feel 100 times better now. My blood work has never been fine though. My IgA is off the charts but that is due to SMM and having celiac together.
I don’t have celiac disease - but I am gluten intolerant and have miserable side effects if I eat anything with gluten. I have other food intolerances as well- I cannot eat dairy, or nightshade plants like potatoes and tomatoes and bell peppers. I find that I feel better if I also avoid all grains- corn, rice, rye, etc.
If you try an elimination diet you will be able to see which foods cause unpleasant reactions for you. I have a limited diet but it is worth sticking to it for me since I very rarely have intestinal problems now and I feel good most of the time. After several years of feeling crummy I am happy to stick to a diet that keeps me feeling good.
I wish you good luck in finding a solution that works for you.
Think of what might have changed after 6 months, your food choices, maybe stress on the body (virus or trauma).
Many of us can’t tolerate oats, even the safe ones. Why I don’t know, the bad grains of wheat barley and rye turn into …’and sometimes oats’. Beans can be tricky when healing, some are rotation crops that include the bad 3. Cross contamination is a thing, knowing the facilities that products are processed in can be essential to figuring out a culprit.
The one mistake we all make is thinking gluten free junk food is okay. Sure it might not affect us right away but the thing is we need very nutritious foods and lots of it to heal years of villi damage.
Food becomes our medicine, it can take the joy out of life a bit, but it is a noble path to be on. I am especially strict, I only eat foods I have endlessly vetted and prepared in my kitchen by me.
All of my kitchen everything got replaced. Pans, dishes, utensils…no plastics. Only safe foods are allowed in my house, nobody has an issue keeping me alive and well.
I pretty much eat foods that are not processed, real food meant for humans.
All of this took awhile to figure out, with the hundreds of symptoms of celiac we all take a unique path. Some can eat out and not feel symptoms or damage, but it is there more than likely. It is important to not judge foods by how we feel after eating, the symptoms might be subtle. Villi damage really cannot be seen, but it happens whether we acknowledge it or not.
You could also be gluten sensitive (along with celiac sprue) which opens up questioning gluten in all grains.
Be patient with yourself, be diligent and remember there are much worse autoimmune diseases, this can be quite easy once it is figured out.
I have celiac. I was diagnosed with hypothyroidism as well. I had the same symptoms and went gluten, dairy and sugar free. I felt fine for a while and then my gastro issues became worse. I cut out all high FODMAP foods. This worked for a while as well. I began to add certain foods back into my diet and the symptoms unleashed on me. I was then diagnosed with Autoimmune Pancreatitis. Steroids helped my symptoms along with Rituximab infusions. Request an igG4 blood test for AIP.
Several years ago I attended a health library presentation on celiac disease. The specialist doctor giving the presentation gave this interesting example: She had a patient that was doing everything right but was still having problems. They finally determined that a multivitamin this patient was taking had gluten in it, and this proved to be the source of their problem!