Frustrated And Fed Up

[mollygf]

Since 2008, I have been dealing with the most ridiculous health issues, blue hands, joint paints, numbness, fatigue, canker sores (my entire life)feeling puffy, and gross, never feeling full, and extreme stomach pains that would leave me in horrible pain. I've seen so many specialists and doctors and it seems they only care about curing the symptoms and not trying to find out the problem! I've been tested for everything and in 2008 I did the celiac blood test and it came back negative. I felt hopeless. During the summer and fall I experienced the worst pain of my life that left me unable to move for an entire day. When I went to the doctors I was told to stop eating any diary, and anything that could hurt my stomach for example, no coffee, no sauce, no orange juice, no salsa I basically was left eating pudding and pretzels and didn't even lose any weight.

I had an endo scop surgery, and the results came back as gastrisis, but when going over the stuff on the phone the doctor mention something about sprue and then said that it didn't seem serve enough for me to do the diet, really how is this possible! Its been frustrating and upsetting I just want to feel good, so 17 days ago I started my gluten free diet, and then last week I started to break out in hives, and my elbows have become extremely dry. I am itchy all over and I can't take it anymore. I am frustrated with no answers and at times I feel like giving up. I feel bad for my loved ones, and my mom and boyfriend especially. I just feel like all I do is complain and that they must be so sick of hearing it. I just wish I had a doctor who actually cared and that someone would be willing to help me.

I made an appointment with a dermatologist today to see about my skin, I am thinking I will probably just vent to her about my issues because at this point, I have exhausted all my resources and I feel like throwing in the towel. I just feel like no one that can help actually cares. This forum has been very therapeutic so far and I am hoping someone can help me!

[MsCurious]

Since 2008, I have been dealing with the most ridiculous health issues, blue hands, joint paints, numbness, fatigue, canker sores (my entire life)feeling puffy, and gross, never feeling full, and extreme stomach pains that would leave me in horrible pain. I've seen so many specialists and doctors and it seems they only care about curing the symptoms and not trying to find out the problem! I've been tested for everything and in 2008 I did the celiac blood test and it came back negative. I felt hopeless. During the summer and fall I experienced the worst pain of my life that left me unable to move for an entire day. When I went to the doctors I was told to stop eating any diary, and anything that could hurt my stomach for example, no coffee, no sauce, no orange juice, no salsa I basically was left eating pudding and pretzels and didn't even lose any weight.

I had an endo scop surgery, and the results came back as gastrisis, but when going over the stuff on the phone the doctor mention something about sprue and then said that it didn't seem serve enough for me to do the diet, really how is this possible! Its been frustrating and upsetting I just want to feel good, so 17 days ago I started my gluten free diet, and then last week I started to break out in hives, and my elbows have become extremely dry. I am itchy all over and I can't take it anymore. I am frustrated with no answers and at times I feel like giving up. I feel bad for my loved ones, and my mom and boyfriend especially. I just feel like all I do is complain and that they must be so sick of hearing it. I just wish I had a doctor who actually cared and that someone would be willing to help me.

I made an appointment with a dermatologist today to see about my skin, I am thinking I will probably just vent to her about my issues because at this point, I have exhausted all my resources and I feel like throwing in the towel. I just feel like no one that can help actually cares. This forum has been very therapeutic so far and I am hoping someone can help me!

So sorry you're going throught all this... not fun! I have no idea, but it sure sounds like celiac or gluten intolerance. You know, sometimes I think doctors and researchers would be leaps and bounds ahead if they'd read sites like this, with real people that have real, and consistent issues that are all sounding the same, over and over and over again. You'd think they'd realize that the tests they have so far aren't giving all the answers, and they should stop dismissing these very real issues that patients have. Hope your doctor will take you seriously and you will get well soon.

[AerinA]

Many, many of your symptoms match what mine were before I stopped eating gluten... my blood work was negative but I went gluten free anyway and the difference gets more and more pronounced every day. I had the same thing with the never feeling full, for the last three days I have been actually able to eat normal meals and haven't been totally miserable in between them. I feel so much more like myself and it has only been a month! Don't lose hope because of doctors who don't know the latest on gluten intolerance, or because of inconclusive tests. It really CAN get better... I know what it's like to spend years chasing doctors around and how frustrating it gets. You know your own body best. I hope you feel better!!

[mushroom]

Hello,and welcome.

It certainly sounds like you have come to the right place. Your symptoms have a familiar ring to them. And even your current hives outbreak is all too familiar. It happened to me too. I will try to give a brief synopsis of what I think is happening.

Gluten intolerance causes us to develop what is called a leaky gut, where larger than normal food particles are able to pass into the blood stream. These larger particles are not recognized by the body's immune system as something that should be there, so they are treated as "enemy" and the body sets off a response to them just as it would if it encountered a cold virus. Except that the body cannot "conquer" this food particle. If it keeps encountering it it keeps reacting to it and it becomes an autoimmune response whenever it comes across it. This may be a large particle of corn, it may be potato, it may be beans, the possibilities are endless. So unfortunately, because of the gluten that we are intolerant of, we also become intolerant of some other foods. And the body has varying ways of exhibiting these intolerances. Sometimes you will get a gluten-like reaction with diarrhea and bloating, sometimes you will get a rash, sometimes you will get hives.

I was too late in understanding this and didn't realize that I still had a leaky, unhealed gut, so I developed many additional intolerances. I was already intolerant of corn and soy (by skin testing) before I quit gluten. After quitting gluten corn gave me bloating, soy gave me skin redness and rash, potatoes and citrus gave me hives. So (and I am very sorry to have to tell you this) you work is not over yet

The best advice I can give is to revert to a very simple diet of whole processed (unlikely-to-provoke-a-response) foods and stabilize on that diet. Then add back in one food at a time and see how you react over 3-4 days. If no response try something else. Keep a food and symptom diary while you are doing this. Eventually, you should find your trigger foods. A sample beginning diet might look like chicken and turkey, veggies (not the nightshade family of potatoes, tomatoes, peppers and eggplant), rice, fruit, seeds, nuts, When you add foods, leave the top allergens until last (and these ten to be a little different - although not a lot) from the general population.) Avoid soy, corn and dairy (especially) since most new gluten-freers do not tolerate this because it is digested by an enzyme made in the small intestine. The idea is to expand your diet as quickly as possible by adding in those things you are most likely to be able to tolerate.

I hope this all makes sense to you. Ask any questions you have.

[MsCurious]

Hello,and welcome.

It certainly sounds like you have come to the right place. Your symptoms have a familiar ring to them. And even your current hives outbreak is all too familiar. It happened to me too. I will try to give a brief synopsis of what I think is happening.

Gluten intolerance causes us to develop what is called a leaky gut, where larger than normal food particles are able to pass into the blood stream. These larger particles are not recognized by the body's immune system as something that should be there, so they are treated as "enemy" and the body sets off a response to them just as it would if it encountered a cold virus. Except that the body cannot "conquer" this food particle. If it keeps encountering it it keeps reacting to it and it becomes an autoimmune response whenever it comes across it. This may be a large particle of corn, it may be potato, it may be beans, the possibilities are endless. So unfortunately, because of the gluten that we are intolerant of, we also become intolerant of some other foods. And the body has varying ways of exhibiting these intolerances. Sometimes you will get a gluten-like reaction with diarrhea and bloating, sometimes you will get a rash, sometimes you will get hives.

I was too late in understanding this and didn't realize that I still had a leaky, unhealed gut, so I developed many additional intolerances. I was already intolerant of corn and soy (by skin testing) before I quit gluten. After quitting gluten corn gave me bloating, soy gave me skin redness and rash, potatoes and citrus gave me hives. So (and I am very sorry to have to tell you this) you work is not over yet

The best advice I can give is to revert to a very simple diet of whole processed (unlikely-to-provoke-a-response) foods and stabilize on that diet. Then add back in one food at a time and see how you react over 3-4 days. If no response try something else. Keep a food and symptom diary while you are doing this. Eventually, you should find your trigger foods. A sample beginning diet might look like chicken and turkey, veggies (not the nightshade family of potatoes, tomatoes, peppers and eggplant), rice, fruit, seeds, nuts, When you add foods, leave the top allergens until last (and these ten to be a little different - although not a lot) from the general population.) Avoid soy, corn and dairy (especially) since most new gluten-freers do not tolerate this because it is digested by an enzyme made in the small intestine. The idea is to expand your diet as quickly as possible by adding in those things you are most likely to be able to tolerate.

I hope this all makes sense to you. Ask any questions you have.

It makes sense to me... and is very good information that I will keep in mind when I finally get to go gluten-free. Your post grabbed my attention because of the hives thing. My dad (who I think might have gluten issues) has hives that almost seem chronic and he is on meds for them, but once again, meds treat the symptom and do not get to the cause and resolution to the problem. Did you have hives often before you were diagnosed? Also, if you get leaky gut, does that get healed up after you go gluten-free? Or is that just a chronic problem that you have to live with now? See how much I don't know? There's just soooo much!