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ShannonA

Confined To Bed For A Year

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Migraines started sporatically about 4 years ago but the last 2 years were worse with 1 year being in bed because of it. Had to quit working 2 years ago, I'M a Registered Respiratory Therapist, was put on 3 different pain meds to help with constant pain along with 2 different injections and a gallon sized ziploc bag full of other meds. I was tested for celiac but it came back negative and I've spent over $20,000 on medical bills along with alternative therapy to find out why I was in so much pain and to no avail, until 2 weeks ago. The last year has literally been HELL on earth. I couldn't bring or pick up my kids from school, I was so weak some days that I couldn't get out of bed, dizziness, legs tingling sometimes, arthritis in hands and shoulder, some months I would stay nauseated, lost 20 lbs and I was small to begin with. I am only 35 years old! I really felt at the end that I was dying. I went to a naturopath with faith that he would help me and tests showed leaky gut, thyroid not functioning properly, not metabolizing fat, liver not functioning properly, enzymes not functioning properly to break down food and he recommended to get off of gluten because I could be sensitive to it. Could gluten have done all of this?I had never heard that before, why didn't the many other doctors recommend that with the dozen or so I have seen. Even the countless ER visits or hospitalizations? So I have been gluten free for 15 days except for 2 days ago when I accidently ate candy that was made on equipment that also makes wheat products. So I had 8 MAGNIFICENT headache and migraine free days then 2 days of pain I am assuming from the candy with traces of wheat. Could I be that sensitive? Thanks for any input!

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Migraines started sporatically about 4 years ago but the last 2 years were worse with 1 year being in bed because of it. Had to quit working 2 years ago, I'M a Registered Respiratory Therapist, was put on 3 different pain meds to help with constant pain along with 2 different injections and a gallon sized ziploc bag full of other meds. I was tested for celiac but it came back negative and I've spent over $20,000 on medical bills along with alternative therapy to find out why I was in so much pain and to no avail, until 2 weeks ago. The last year has literally been HELL on earth. I couldn't bring or pick up my kids from school, I was so weak some days that I couldn't get out of bed, dizziness, legs tingling sometimes, arthritis in hands and shoulder, some months I would stay nauseated, lost 20 lbs and I was small to begin with. I am only 35 years old! I really felt at the end that I was dying. I went to a naturopath with faith that he would help me and tests showed leaky gut, thyroid not functioning properly, not metabolizing fat, liver not functioning properly, enzymes not functioning properly to break down food and he recommended to get off of gluten because I could be sensitive to it. Could gluten have done all of this?I had never heard that before, why didn't the many other doctors recommend that with the dozen or so I have seen. Even the countless ER visits or hospitalizations? So I have been gluten free for 15 days except for 2 days ago when I accidently ate candy that was made on equipment that also makes wheat products. So I had 8 MAGNIFICENT headache and migraine free days then 2 days of pain I am assuming from the candy with traces of wheat. Could I be that sensitive? Thanks for any input!

Want the short answer?

Yes.

Long answer? I'm not a medical professional but after reading this forum a LOT I have run across a number of people who are indeed extremely sensitive. Give it some more time and see how you feel. I really, really hope that you are on the way to healing. You have suffered so much, and it is even more grievous because it is depriving children of their mother.

Why didn't doctors mention it? Most docs are trained to look for celiac in children. And they are trained to look for diarrhea, bloated bellies, and severe underweight. Not many have learned about the neurological effects gluten can have on people.

I am so, so sorry you have suffered such pain and expense and loss. I am glad, however, that you found your way to this forum. There are several here who suffered greatly for years, look for posts by IrishHeart for example (click here for a thread she created for new folks. They will be along soon I'm sure! Welcome!

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Want the short answer?

Yes.

Long answer? I'm not a medical professional but after reading this forum a LOT I have run across a number of people who are indeed extremely sensitive. Give it some more time and see how you feel. I really, really hope that you are on the way to healing. You have suffered so much, and it is even more grievous because it is depriving children of their mother.

Why didn't doctors mention it? Most docs are trained to look for celiac in children. And they are trained to look for diarrhea, bloated bellies, and severe underweight. Not many have learned about the neurological effects gluten can have on people.

I am so, so sorry you have suffered such pain and expense and loss. I am glad, however, that you found your way to this forum. There are several here who suffered greatly for years, look for posts by IrishHeart for example (click here for a thread she created for new folks. They will be along soon I'm sure! Welcome!

ME TOO! It is such a comfort to hear so many of the same symptoms and finally to have a answer! I am not going crazy or losing my mind. Praise God! And my children will have me better than ever because I appreciate them even more than I ever thought that I could!!

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Migraines started sporatically about 4 years ago but the last 2 years were worse with 1 year being in bed because of it. Had to quit working 2 years ago, I'M a Registered Respiratory Therapist, was put on 3 different pain meds to help with constant pain along with 2 different injections and a gallon sized ziploc bag full of other meds. I was tested for celiac but it came back negative and I've spent over $20,000 on medical bills along with alternative therapy to find out why I was in so much pain and to no avail, until 2 weeks ago. The last year has literally been HELL on earth. I couldn't bring or pick up my kids from school, I was so weak some days that I couldn't get out of bed, dizziness, legs tingling sometimes, arthritis in hands and shoulder, some months I would stay nauseated, lost 20 lbs and I was small to begin with. I am only 35 years old! I really felt at the end that I was dying. I went to a naturopath with faith that he would help me and tests showed leaky gut, thyroid not functioning properly, not metabolizing fat, liver not functioning properly, enzymes not functioning properly to break down food and he recommended to get off of gluten because I could be sensitive to it. Could gluten have done all of this?I had never heard that before, why didn't the many other doctors recommend that with the dozen or so I have seen. Even the countless ER visits or hospitalizations? So I have been gluten free for 15 days except for 2 days ago when I accidently ate candy that was made on equipment that also makes wheat products. So I had 8 MAGNIFICENT headache and migraine free days then 2 days of pain I am assuming from the candy with traces of wheat. Could I be that sensitive? Thanks for any input!

I don't think you are sensitive...this is what most Celiac's go through when they have even a smidgen of wheat or CC. That is the norm for us.

All of your symptoms could definitely be from having Celiac or are associated conditions to the disease. The reason no one ever mentioned this to you is because doctors just will not address food issues with people. They just don't seem to grasp how sick you can become from eating certain foods. Hard to believe but oh so true.

Unless you have an overwhelming desire to obtain an official diagnosis (which could be difficult), stay gluten free and watch your health return! ;)

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I don' think you are sensitive...this is what most Celiac's go through when they have even a smidgen of wheat or CC. That is the norm for us.

All of your symptoms could definitely be from having Celiac or are associated conditions to the disease. The reason no one ever mentioned this to you is because doctors just will not address food issues with people. They just don't seem to grasp how sick you can become from eating certain foods. Hard to believe but oh so true.

Unless you have an overwhelming desire to obtain an official diagnosis (which could be difficult), stay gluten free and watch your health return! ;)

Yes I will stay gluten free. It was scary at first bc I didn't know anything other that baking with wheat or everything has wheat in it. But I am learning and I am so thankful for this website! Truely a miracle!!!Thanks! Also should I come into contact with wheat when handling bread for instance for my children?

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Welcome! I'm so happy for you and your children that you have gotten some relief. I too, spent years in bed with migraines and a multitude of other symptoms. Weakness, nausea, (for which I nibbled soda crackers! my God!) and I thought I was going to die. Never got a Dr. to think symptoms were serious. I came here almost 2 years ago and realized that I have Celiac Disease. It has totally changed my life. I regret not being able to function all the years my son was growing up. I figured this out when he was 16 and I had been sick since he was 8 years old. Very soon after that we realized he has it too. Both of our lives are a total joy and relief now. Normal life and not feeling sick every day just makes us feel happy and joyous! Yes, wheat can do all that to you! I have no doubt that the next year is going to be a bit of a roller coaster, but nothing like the hell you have already gone through. Lot's of us on here lost whole entire years of our lives only to find out it was from the sandwiches we ate. As for Dr.'s not diagnosing this disease, I really don't know what to say- other than this is a travesty of monumental proportions. I'd been to the ER many times dehydrated, and I'd gone to 25 Dr.'s but I was so gluten sluggish that I couldn't impress upon them how very sick I really was. I was told it was fibromyalgia and would not get any better. It wasn't. I'm so grateful for this forum. Keep reading and writing and eating gluten free. Don't forget your supplements! Now your gallon bag will be filled with vitamins and gluten free snacks! Please be aware that even touching a sandwich can get gluten on your hands and make you sick. You must be very vigilant about avoiding gluten to stay headache free. I learned that the hard way, probably several times the first 6 months of recovery so I want to spare you that. I'm so excited for you and your kids! You are going to be feeling so much better! And this a great place to learn. After reading posts here for 2 years I can tell you that there are many, many people who lived the way you did the last years and the way I did all my sick years. I'm perfectly, normally healthy now unless I get gluten. I do still get menstrual migraines though. If you do too, I hate to tell you that they actually got worse and on reading the research, I found that this is very common as your hormones start to work again when you get healthy. But it is wonderful to know it will only be once a month and not every single day of my life. The gluten headaches are gone completely, unless I get trace gluten. Then I know the day after because the headaches, nausea, depression, anxiety, and weakness come back. It gets better though, the more strict you are. I really am happy for you that you are doing well with this! It has been a life-saving and life-changing miracle for me and my son! We can actually live our lives now. Other than having some PTSD issues from being so sick for so long and not being believed by Dr.'s, my life is 100% better than it used to be.

Just curious...How old are your children? Do you plan to have a gluten free home? do you think gluten could be bothering them? I'm thrilled for them that they are getting their mom back! Hang in there...and ask us if you have any questions. But yes, you belong here! Incidentally, as I see you are a respiratory therapist, I will tell you that my son's symptoms were entirely different than mine. He had severe asthma since age 2 (when he started eating real table food) and he was constantly on prednisone, antibiotics, inhalers, and still he was not able to function normally. I was so frustrated for him and yet we were doing all we could. We thought. I convinced him to go gluten free...and guess what? All of his asthma symptoms disappeared! ALL of them! He was able to drop all inhalers within 4 months of being gluten free. I asked the Dr. if he could be Celiac. He said no, that isn't a Celiac symptom. But guess what? It is! Severe vitamin D deficiency causes severe asthma-like symptoms! Then after 6 months of him being gluten free and having no asthma problems, they finally came out with like 3 studies done on asthma and Celiac and found there was a close association. I've read a lot of the archives here and there are many who were relieved of their asthma symptoms or their allergy symptoms after going gluten free. I so wish I had known about Celiac and asthma. It has changed our life and our medical bills too! Amazing. I just thought you might find that interesting since you are a respiratory therapist. Sorry for going on so long...but I get excited when someone hit's the jackpot! And you just did!!! Take care and enjoy being a mom again. It just gets better and better as time goes on. You will see how much better you are in year. :)

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Welcome! I'm so happy for you and your children that you have gotten some relief. I too, spent years in bed with migraines and a multitude of other symptoms. Weakness, nausea, (for which I nibbled soda crackers! my God!) and I thought I was going to die. Never got a Dr. to think symptoms were serious. I came here almost 2 years ago and realized that I have Celiac Disease. It has totally changed my life. I regret not being able to function all the years my son was growing up. I figured this out when he was 16 and I had been sick since he was 8 years old. Very soon after that we realized he has it too. Both of our lives are a total joy and relief now. Normal life and not feeling sick every day just makes us feel happy and joyous! Yes, wheat can do all that to you! I have no doubt that the next year is going to be a bit of a roller coaster, but nothing like the hell you have already gone through. Lot's of us on here lost whole entire years of our lives only to find out it was from the sandwiches we ate. As for Dr.'s not diagnosing this disease, I really don't know what to say- other than this is a travesty of monumental proportions. I'd been to the ER many times dehydrated, and I'd gone to 25 Dr.'s but I was so gluten sluggish that I couldn't impress upon them how very sick I really was. I was told it was fibromyalgia and would not get any better. It wasn't. I'm so grateful for this forum. Keep reading and writing and eating gluten free. Don't forget your supplements! Now your gallon bag will be filled with vitamins and gluten free snacks! Please be aware that even touching a sandwich can get gluten on your hands and make you sick. You must be very vigilant about avoiding gluten to stay headache free. I learned that the hard way, probably several times the first 6 months of recovery so I want to spare you that. I'm so excited for you and your kids! You are going to be feeling so much better! And this a great place to learn. After reading posts here for 2 years I can tell you that there are many, many people who lived the way you did the last years and the way I did all my sick years. I'm perfectly, normally healthy now unless I get gluten. I do still get menstrual migraines though. If you do too, I hate to tell you that they actually got worse and on reading the research, I found that this is very common as your hormones start to work again when you get healthy. But it is wonderful to know it will only be once a month and not every single day of my life. The gluten headaches are gone completely, unless I get trace gluten. Then I know the day after because the headaches, nausea, depression, anxiety, and weakness come back. It gets better though, the more strict you are. I really am happy for you that you are doing well with this! It has been a life-saving and life-changing miracle for me and my son! We can actually live our lives now. Other than having some PTSD issues from being so sick for so long and not being believed by Dr.'s, my life is 100% better than it used to be.

Just curious...How old are your children? Do you plan to have a gluten free home? do you think gluten could be bothering them? I'm thrilled for them that they are getting their mom back! Hang in there...and ask us if you have any questions. But yes, you belong here! Incidentally, as I see you are a respiratory therapist, I will tell you that my son's symptoms were entirely different than mine. He had severe asthma since age 2 (when he started eating real table food) and he was constantly on prednisone, antibiotics, inhalers, and still he was not able to function normally. I was so frustrated for him and yet we were doing all we could. We thought. I convinced him to go gluten free...and guess what? All of his asthma symptoms disappeared! ALL of them! He was able to drop all inhalers within 4 months of being gluten free. I asked the Dr. if he could be Celiac. He said no, that isn't a Celiac symptom. But guess what? It is! Severe vitamin D deficiency causes severe asthma-like symptoms! Then after 6 months of him being gluten free and having no asthma problems, they finally came out with like 3 studies done on asthma and Celiac and found there was a close association. I've read a lot of the archives here and there are many who were relieved of their asthma symptoms or their allergy symptoms after going gluten free. I so wish I had known about Celiac and asthma. It has changed our life and our medical bills too! Amazing. I just thought you might find that interesting since you are a respiratory therapist. Sorry for going on so long...but I get excited when someone hit's the jackpot! And you just did!!! Take care and enjoy being a mom again. It just gets better and better as time goes on. You will see how much better you are in year. :)

So inspiring! I so needed to hear all of this! Thank you!

I have not heard of asthma/celiac correlation but I would not doubt it knowing the destruction that gluten can do to a body since researching it lately. Thank God you figured it out!

I did take my 7 year old off of wheat 9 days ago bc I feel that he's always sluggish and I know about feeling sluggish. He should be active, I also have a 14yr old and 4 yr old and this all started when she was 8 months old. So we'll see how he feels in a couple weeks!

And yes the naturopathic doctor put me on many supplements for my organs, vitamins and many electrolytes were low or zero due to malabsorption. Thanks again!

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Yes I will stay gluten free. It was scary at first bc I didn't know anything other that baking with wheat or everything has wheat in it. But I am learning and I am so thankful for this website! Truely a miracle!!!Thanks! Also should I come into contact with wheat when handling bread for instance for my children?

I would highly suggest reading: Celiac Disease: The Hidden Epidemic by Dr. Peter Green. He is one of the leading Celiac doctors in the US and the book does an excellent job of explaining everything and most importantly, gives a good tutorial on how the digestive system works so you may understand the disease process better. It is a wealth of information for the "new to Celiac" people.

Gluten cannot be absorbed through the skin...the molecule is too large. I hate to tell people not to handle wheat bread but there are risks. I was making a sandwich for hubby when I was first diagnosed and the phone rang. I answered the phone, as I usually do, and completely forgot to wash my hands beforehand. I must have ingested some crumbs from my hands and I had a huge reaction from doing that and like yourself, could not believe I got so sick from such a simple maneuver. Yes, mere crumbs from bread can do that! The longer you are gluten free, the more you will feel a reaction when you take a hit. On the other hand, gluten-free bread is expensive and feeding kids gluten-free bread, unless they have to be gluten-free, can be costly. I would suggest, if you are still going to have gluten items in the house, to wear gloves when making a sandwich and wash hands well after doing so. Use paper towel to make the sandwiches on and clean the area with paper towel and cleaner (don't go too crazy or become paranoid about it) after and you should be fine. You may have to change protocol as you learn more and see what works best for you and your family.

You may want to keep an eye on your kids because this is a genetic problem and if you do have Celiac, then your kids may trigger for it down the road.

Just be observant and if they start having problems, keep an open mind that this could be the problem. You now know what your problem is so read up on it and ask questions. You'll be an expert in no time.

There is a learning curve but don't despair.....I have been able to convert just about everything I eat to a good gluten-free version so there is no need to feel deprived on this diet. My health did a 100% turnaround after I was diagnosed and I was a flaming mess then. You will also discover other problems you may have that go away with the diet. The way this disease messes people up is a real eye opener, once you go gluten free. Stick around and you'll learn a wealth of information about Celiac!

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I am another whose health spiraled so completely out of control and found myself spending $30K out of pocket looking for why I was dying and in such agonizing burning bone/joint/muscle pain, a burning GI tract, a loss of 90 lbs., losing massive muscle mass and suffering severe migraines, raging insomnia, anxiety, anemia, ataxia, loss of cognitive skills, hair loss, liver, thyroid and kidney problems, hypoglycemia, and more. My laundry list of symptoms reads like a celiac text book but not one of the many professionals I saw for years saw it in me. They symptom-treated with meds that did nothing at all. I even saw a Naturopath for 2 years and an Integrative health MD. No answers. Eventually, I could not walk, stand, sit or lie down without pain. I lost 3 years in this hell.

My hubs was a rock and took me to dozens of doctors in 3 different states as he watched the light slowly going out of me. Our lives came to a complete stand still.

If I had not figured it out myself and returned for a definitive diagnosis, I would probably be dead by now. No matter what the doc said, I was going gluten-free anyway.

It took me months before I saw any improvement and I have to remain patient. Many symptoms are resolved but because I went too long unDXed, I do not know if they will all go away (nerve damage is difficult to resolve) My symptoms started in my 20's (gall bladder disease and multiple miscarriages and reproductive problems) and I could have avoided so much misery and maybe had children if I had known.

If you feel better off gluten, it is because you have a problem with it. It's just that simple.

Asthma is most definitely linked to Celiac/gluten as are many autoimmune diseases.

Here is a list of symptoms associated with celiac disease.

You'll find asthma under "immune system" and migraines under

"neurological". You'll find the rest of your symptoms there, too.

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

Welcome to the Forum and please, take good care of yourself.

Keep us posted. We care!

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I am another whose health spiraled so completely out of control and found myself spending $30K out of pocket looking for why I was dying and in such agonizing burning bone/joint/muscle pain, a burning GI tract, a loss of 90 lbs., losing massive muscle mass and suffering severe migraines, raging insomnia, anxiety, anemia, ataxia, loss of cognitive skills, hair loss, liver, thyroid and kidney problems, hypoglycemia, and more. My laundry list of symptoms reads like a celiac text book but not one of the many professionals I saw for years saw it in me. They symptom-treated with meds that did nothing at all. I even saw a Naturopath for 2 years and an Integrative health MD. No answers. Eventually, I could not walk, stand, sit or lie down without pain. I lost 3 years in this hell.

My hubs was a rock and took me to dozens of doctors in 3 different states as he watched the light slowly going out of me. Our lives came to a complete stand still.

If I had not figured it out myself and returned for a definitive diagnosis, I would probably be dead by now. No matter what the doc said, I was going gluten-free anyway.

It took me months before I saw any improvement and I have to remain patient. Many symptoms are resolved but because I went too long unDXed, I do not know if they will all go away (nerve damage is difficult to resolve) My symptoms started in my 20's (gall bladder disease and multiple miscarriages and reproductive problems) and I could have avoided so much misery and maybe had children if I had known.

If you feel better off gluten, it is because you have a problem with it. It's just that simple.

Asthma is most definitely linked to Celiac/gluten as are many autoimmune diseases.

Here is a list of symptoms associated with celiac disease.

You'll find asthma under "immune system" and migraines under

"neurological". You'll find the rest of your symptoms there, too.

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

Welcome to the Forum and please, take good care of yourself.

Keep us posted. We care!

Yes my husband has been my rock too! I am glad that you are well now and so glad to have found this forum! It is wonderful! I had most of your symptoms too, I even started saying things to my children and 3 seconds later did not know that I had said anything. That was SCARY! Thanks for your input, everything helps! It's so nice to have someone understand!

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