I'M So Frustrated

[Chanterelle]

I was never formally diagnosed with gluten sensitivity. These are the symptoms I've been experiencing. Eleven years ago, during the second semester of my freshmen year of college, I had my first experience with extreme exhaution. I slept for 14 hours a day and felt lethargic and dizzy when I was awake. I gained weight but didn't eat very much (because I slept through meals). I also go severe hives all over my body. I eventually went to the doctor about the hives. She said it was probably dust mites (no testing done) and gave me allegra. The hives persisted for six months and then mysteriously went away. Ever since then I have dealt with exhaustion, over sleeping, extreme anxiety and overstimulation, dizziness, numbness in my hands and feet, bloating, weight gain, pain in my lower left side that comes and goes and is sometimes severe, hair loss, diarrhea and constipation and nausia (i think that covers everything). Until last summer I thought my ovaries were causing these symptoms (except the diarrhea and constipation of course, i thought that was normal). I had an ovarian cyst removed about 7 uears ago, so I always thought my symptoms were from polycystic ovary syndrome that my doctors weren't diagnosing. But, I've had ultrasounds on numerious occasions and my ovaries were okay. I've been tested for thyroid issues and those tests always come back normal. I don't like going to doctors becuase they never seem to be able to help me. Last winter, I got a yeast infection that I was unable to get rid of. I didn't have health insurance at the time and was only able to go to a sliding scale gyno. They gave me the same prescriptions over and over and the infection didn't go away. I put myself on a diet where I only ate meat and vegetables to starve off the yeast and the infection went away. But, after I went back to eating the way I had been, my infection returned. I have always had a healthy diet. My parents are gardners and avid cooks. I grew up on mostly organic veggies and venison. So, the diet that I went back to wasn't McDonald's or anything like that. I started to see an acupunturist/herbalist for help and healing. She put my back on the anti yeast diet and helped me introduce one food at a time to see if I was having an reaction to somethin I was eating. It turned out that wheat, dairy and nightshade vegetables bother me. Wheat is at the top of that list. I can eat the other foods in moderation, but if I eat something with gluten in it (even one bite) I have immediate reactions. I bloat up and get diarrhea. I've been gluten free for five months now and feel much better than I used to. My dizziness and extreme exhaustion are gone, so is the numbness in my hands and feel. My hair is falling out much less. I still have some issues with diarrhea and get that awful pain in my lower left abdomen. I have health insurance now, but my doctor said she can't test me for gluten intolerance because I quit eating it. Does this sound like gluten intolerance/celiac? Is there a difference between those two things? I'm frustrated because I get sick almost everytime I go out to eat (even when I choose gluten free food). I'm also frustrated because I don't have a diagnosis and sometimes feel like I could be wrong about gluten being the source of my sickness. I don't know how sensitive people are and if cross contamination is a serious issue? Is that why I get sick when I go out? At home I mostly eat meat, veggies, fruit, olive oil, fresh spices, lemons, almond milk, garlic and some glutino products. I also bake with gluten free flours when I have time. It seems like when I venture outside of that diet I'm gambling with my health. I might get bloated, tired or diarrhea from eating something like chips or going out to eat. I don't want my life to so restricted. Should I see a dietician? Is this something they could help with? Is there some test my doctor can do even though I quit eating wheat? Maybe she doesn't know about it. I don't want to start eating it again for the sake of a blood test. I can't bare to feel that way again.

[YoloGx]

I was never formally diagnosed with gluten sensitivity. These are the symptoms I've been experiencing. Eleven years ago, during the second semester of my freshmen year of college, I had my first experience with extreme exhaution. I slept for 14 hours a day and felt lethargic and dizzy when I was awake. I gained weight but didn't eat very much (because I slept through meals). I also go severe hives all over my body. I eventually went to the doctor about the hives. She said it was probably dust mites (no testing done) and gave me allegra. The hives persisted for six months and then mysteriously went away. Ever since then I have dealt with exhaustion, over sleeping, extreme anxiety and overstimulation, dizziness, numbness in my hands and feet, bloating, weight gain, pain in my lower left side that comes and goes and is sometimes severe, hair loss, diarrhea and constipation and nausia (i think that covers everything). Until last summer I thought my ovaries were causing these symptoms (except the diarrhea and constipation of course, i thought that was normal). I had an ovarian cyst removed about 7 uears ago, so I always thought my symptoms were from polycystic ovary syndrome that my doctors weren't diagnosing. But, I've had ultrasounds on numerious occasions and my ovaries were okay. I've been tested for thyroid issues and those tests always come back normal. I don't like going to doctors becuase they never seem to be able to help me. Last winter, I got a yeast infection that I was unable to get rid of. I didn't have health insurance at the time and was only able to go to a sliding scale gyno. They gave me the same prescriptions over and over and the infection didn't go away. I put myself on a diet where I only ate meat and vegetables to starve off the yeast and the infection went away. But, after I went back to eating the way I had been, my infection returned. I have always had a healthy diet. My parents are gardners and avid cooks. I grew up on mostly organic veggies and venison. So, the diet that I went back to wasn't McDonald's or anything like that. I started to see an acupunturist/herbalist for help and healing. She put my back on the anti yeast diet and helped me introduce one food at a time to see if I was having an reaction to somethin I was eating. It turned out that wheat, dairy and nightshade vegetables bother me. Wheat is at the top of that list. I can eat the other foods in moderation, but if I eat something with gluten in it (even one bite) I have immediate reactions. I bloat up and get diarrhea. I've been gluten free for five months now and feel much better than I used to. My dizziness and extreme exhaustion are gone, so is the numbness in my hands and feel. My hair is falling out much less. I still have some issues with diarrhea and get that awful pain in my lower left abdomen. I have health insurance now, but my doctor said she can't test me for gluten intolerance because I quit eating it. Does this sound like gluten intolerance/celiac? Is there a difference between those two things? I'm frustrated because I get sick almost everytime I go out to eat (even when I choose gluten free food). I'm also frustrated because I don't have a diagnosis and sometimes feel like I could be wrong about gluten being the source of my sickness. I don't know how sensitive people are and if cross contamination is a serious issue? Is that why I get sick when I go out? At home I mostly eat meat, veggies, fruit, olive oil, fresh spices, lemons, almond milk, garlic and some glutino products. I also bake with gluten free flours when I have time. It seems like when I venture outside of that diet I'm gambling with my health. I might get bloated, tired or diarrhea from eating something like chips or going out to eat. I don't want my life to so restricted. Should I see a dietician? Is this something they could help with? Is there some test my doctor can do even though I quit eating wheat? Maybe she doesn't know about it. I don't want to start eating it again for the sake of a blood test. I can't bare to feel that way again.

Dear Chanterelle,

Welcome to the Forum!

And yes, it is very likely that at the very least you have severe gluten intolerance. I agree--going back on gluten to find out if you have celiac officially or not seems hardly worth it. It can actually be dangerous for your health.

You sound like you figured out a lot of this on your own--good work!

Eating out at a restaurant is a pain for many of us. There are a few places one can go, but even there you have to make sure they servers etc. haven't forgotten the protocol. I find it easier to take my food with me in a little insulated bag. Its just food after all. If everyone else wants to go to a restaurant that is one approach to take. I even take along my own thermos and/or bottled water since I actually have gotten "glutened" from a servers hands via Cross Contamination (CC)-- or even a boyfriend's hands at that -- gallantly helping me by opening the bottle cap...

There are extra things to do to avoid CC by the way. There is a list in the info section. Mainly its stuff like don't use toasters that have previously been used for gluten, toaster ovens too, iron pans need to be baked at 600 degrees for an hour (i.e., in a self cleaning oven) to get rid of residual baked in gluten, all your wooden utensils and cutting boards need to be gotten rid of or at least not used for your food,make sure there is not gluten in your shampoos, soaps, laundry detergent, cosmetics, chapstick, dog or cat food etc. You get the picture. Once done it is worth it even though its a lot of bother. For me many of my residual achy body, anxiety, stuffy nose and easy to get flus and colds symptoms went away.

You also may find over time that avoiding all grains and sugars may be essential to the healing from time to time so the body can be how it naturally was made to be without the stresses of modern convenience foods... The villi after all need to recover, plus with all these symptoms you have had, candida overgrowth is fairly likely...

I have found occasional use of detox herbs helpful as well as using olive leaf extract and oregano oil and caprylic acid useful to counteracting the candida. Enterically coated acidophilus is potent too to re-establishing a healthier gut flora. Make sure you avoid all alcohol based tinctures by the way due to the likely gluten content.

Further there are various additives to look out for. See the info section...

Bea

[nora-n]

Yes there is little chance of testing positive by the usual elaic blood tests when you are gluten free.

Some people get tested by enterolab and often antibodies can still be detected up to a year after going gluten-free. These are tests for gluten sensitivity and not celiac, and they are more sensitiv than celiac tests. enterolab.com