I am struggling with gluten and wheat especially, but I am not celiac.
Those of you who are not celiac, but are sensitive to gluten and wheat: How do you feel it? How does gluten affect you?
I don't have an official celiac diagnosis - my bloodwork was negative which isn't uncommon & by the time I had a scope I had been gluten free for over 5 months. So...I don't have a confirmed diagnosis but I tell people I am celiac and have been religiously gluten free for over 10 years. It's easier to just say I have celiacs when I pass up food or bring my own.
My symptoms start with headache & spaciness - and turn into flu like symptoms. I want to curl up into a ball and be left alone with my stomach cramps, fatigue and eventual bathroom issues. It takes a few days to come out of the crampy painful stomach and be able to eat without discomfort. Lots of fatigue, just drained.
I used to pack a lunch for work and I always had a sandwich on whole wheat bread. I started to get terrible rashes on my shins and the tops of my feet after lunch. I went to my primary doc (who is also a gastro) and he tested me for celiac and I was negative.
Fast forward one and a half years later and I am diagnosed with Sjogren's. I am sensitive to gluten even though I am negative for celiac. I am trying my hardest to go completely gluten free, as I think that I feel much better without it.
I am thinking of keeping a journal to record how I feel day to day trying to be without gluten. I feel that if I have a slipup and have gluten that I can pinpoint what food was a trigger for either a rash or GI discomfort.
Its kind of a pain in the butt (a journal) as if we didn't have enough to do. Right?
I guess I am willing to sacrifice the time if it gives me the answers that I want.
Take care.
I sent years and years with IBS symptoms that woukd come and go. Sometimes the abdominal pain was so bad i would be sweating with the cramps. I also had the glands under my arms were swollen and so painful at times I could barely touch the skin.
I had the blood test for celiac and of course it was negative. I had a nutritional profile done by a natural doctor and it came back gluten intolerant but not allergic to wheat.
So I am two years almost, gluten free and my glands very rarly swell anymore and my stomach is so much better. It took about six months for the full benifits. I have been really strict with it too.
Good luck to you
I have done many trials over the years of going gluten free to see if it is was a migraine trigger, chronic cough trigger, or if it helped me feel better overall. I tested negative to the blood test and my endo was normal. The complementary medicine MD tested for food allergies and it came back sensative to just about all food including gluten. Ha!
I never noticed any improvement by going gluten free, dairy free, egg free etc.
Body aches, swollen/hot joints, brain fog, low energy, stuffy nose. :( No gastro symptoms, though - I think it's an immune-system reaction, not a gut/intestinal thing.
I don't react real well to dairy, either - though that tends to be more digestive symptoms (gas, etc) with some body aches a day or two later.
My bloodwork was positive for celiacs but the capsule endoscopy could not find traces of the disease, so I continue to eat foods with gluten in them. When I do eat foods with gluten in them I feel stomach pains, achy all over, almost flu-like as well but it is only with certain foods that contain gluten, not all...so I think allergy testing is in order for me.
Good luck.
I am not sure if I have celiacs or not because I have selected not to have a biopsy done and my blood work was negative. I had been gluten free for 3 months when I had the blood work done. I will not go back to eating gluten due to the effects that it has on me. I have horrible abdominal pain and diarrhea about 20 minutes after consuming gluten. It doesn't have to be a lot of gluten either.
MANY MANY people are gluten intolerant. You don't have to have celiac to have a problem with it. Especially now that most wheat is GMO!!!!
I get rashes, itching, stomach pain, constipation, etc.
Go off COMPLETELY and see how you feel in a few months.
The only caveat is that if you are off gluten and decide you want to the endoscope to prove celiac you must eat gluten for somewhere around 3 months to get it. For me, that was impossible....don't think I could get past one snack with gluten !!!!!!
Me either northern...one bite of gluten and I am sick!
I get rashes and itching too. My stomach seems ok. Isn't that odd?
It really does have a broad range - I knew a lady who was diabetic and became anemic. She had the scope and turns out she was celiac...no stomach issues at all. Huh.
I know I am gluten intolerant, although it took many years for me to figure that out. I think the intolerance developed gradually. I doubt that I have celiac and do not intend to be scoped for it.
Reactions to wheat--and rye, barley and corn--are all related to inflammation. Gas and bloating, fatigue, heavy limbs, runny nose, brain fog. I can eat occasional corn products with minimal reactions. I occasionally eat tamari soy sauce with wheat, as I do not like the wheat free variety. About once per year I eat batter fried fish because I love it.
I have to wonder if the GMO formulas changed during those years--1980's and 1990's. In 2003, I traveled France and found no difficulties with dry eyes or digestion that I had been having in the US. I began to think about differences in GMO wheat.
Today is a day of protest against Monsanto and GMO.
http://www.youtube.com/watch?v=9M_jvLu0YHY
I have tried an heirloom variety of wheat called einkorn. It is botanically different, but still causes some IBS issues. I made a very good bread with einkorn flour, but never finished the loaf, as both DH and I sadly seemed to react to it.
I first discovered I was gluten intolerant while I was living in Switzerland in the 1983. I knew I was getting sick from something I was eating but couldn't figure out what. My joints swelled up and hurt; I bloated and felt overall bad, weepy, depressed physically, although not emotionally.
I perused the medical library and discovered celiac disease. I didn't have any of the intestinal symptoms described, but it gave me a group of foods to test. And gluten (and dairy) were the culprits for sure.
First, I figured it was European varieties, but imported wheat from the US didn't help. I tried biodynamic wheat. I tried einkorn and spelt, which I figured were not as highly bred. I don't think GMO was an issue then. Nothing helped. From this, I'm concluding that my intolerance is not from GMO per se (although there are certainly other reasons to limit them).
I stopped eating gluten and dairy for several years, but fell off the wagon again. About five years later, I started getting knuckle bumps and joint pains again. After going GF and DF again, the joint pains soon went away and over the next couple of years the knuckle bumps went away too. I'm thinking I delayed my AI symptoms for another 5-8 years.
I've never been tested for gluten intolerance because my reaction to gluten-containing grains is the best test.
Oh.. I forgot. When I quit eating gluten, a LOT of my muscle and joint pain went away.