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Intro With Lots Of Mixed Emotions


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11 replies to this topic

#1 Kallismom

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Posted 11 May 2012 - 04:43 AM

I would just like to introduce myself and maybe get a little confirmation of my symptoms even though I KNOW that I have this condition that has plagued my family undiagnosed for generations.

I am a 34, married with two children. I have been having issues my entire life, but always assumed it was how most people were because pretty much everyone in my house growing up (aside from my father) had issues too. Starting in infancy, I had horrible colic. My mom used to say that I would scream for nearly 24 hours. I don't know how I got kind of normal, but I guess I did eventually because I finally stopped screaming.

My entire childhood I would have random bouts of EXTREME abdominal pain. The pain was so excruciating that I could not walk until the spasms in my gut would stop. Again, my mom chalked it up to gas and didn't think much of it. She had " bad gas" too. My mom also had the same horrible muscle cramps in her calves that would wake me up screaming in the middle of the night. I would jump up and down, grip the rails of my bed and wait for them to pass. "Eat a banana good", was all my mom would say.

I always seemed to be flushed on my face and neck. I remember when I would get new teachers they would ask if I was OK, and I would tell them yes I do this all the time. Nothing was ever anything to worry about.
I always had some sort of rash growing up. My mom called it "mad itch". I went to the doctor and he told me I was allergic to something in chocolate? I was only around 8 at the time and did not give him or his diagnosis much attention, neither did my parents. In middle school I got a different rash that consisted of huge scaly, itchy, oozing patches all over my stomach, thighs, and back. I could not participate in gym because of the fear of being seen while dressing out. The doctor showed me a picture in a big book and told me it was something with a funny name (I can't remember). The rash finally went away a year to 18 months later. Life continued in my house as usual.

My teen years were relatively normal, with occasional illnesses, and continued leg cramps but the horrible stomach aches and rashes seemed to go away.

I grew up and got married. We had two children and all was well, until a few months after having our second child. I woke up to the most horrible pain I had ever experienced in my life. I was throwing up green bile and thought I was going to die. I called my mom who was at this point suffering with Non Hodgkins Lymphoma along with thyroid disease and IBS. She said "good, it's your gallbladder". She should know, because her gallbladder had to be removed as a teenager. I had my gallbladder removed as well, I was only 26.

After my mom passed away in 2006 at only 54 years old, I started having the stomach aches again. I assumed it was due to losing my gallbladder a few years prior and stopped eating hot dogs and sausage for the most part. I also stopped eating seasonings from pouches because I was sure that MSG was giving me headaches.

I had never heard of Celiac until one day I left the TV on for my dogs. I came home to the 700 club playing and Elizabeth Hasslebeck was on talking about having the disease. It caught my attention as I realized that it sounded just like my mom.
I felt very sad to think that my mom could have potentially lived a much different life if she had known about this. For a brief moment I thought maybe that was why I had so many "little quirky issues". I quickly dismissed the thought.

I lived the next few years in denial. Horribly aching joints, stomach aches, deteriorating mental focus, muscle cramping denial.

I never really eat only just one thing but a couple of weeks ago my husband bought me a really awesome bread maker. I made bread. We ate sandwiches. I got stomach aches. I thought it must be something I ate, nothing unusual. One night I had a completely empty stomach and ate a nice big piece of PLAIN homemade bread. OH MY GOSH, I felt like someone was stabbing me through the belly button. It was horrible, and all I had eaten was a plain piece of bread. I remembered Celiac and looked it up on the internet. I could not believe all the symptoms that I, my mom, or my siblings had. In spite of the obvious I ate pasta the next day on an empty stomach, I was promptly visiting the bathroom.


I apologize for the book, but I think I needed to see everything literally spelled out in front of me.

I went gluten free this past Monday. It didn't take long to realize I had been "glutened". I had a California roll. I never even thought about the imitation crab meat having gluten in it. Duh, I do now. My face looks like two apples and I woke up to a horrible Charlie Horse. I have learned a lesson.

I feel somewhat empowered and I am glad that there is a community out there to hopefully help me through the learning process.
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#2 pricklypear1971

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Posted 11 May 2012 - 07:27 AM

Welcome!

Stories like yours are the best and worst, I think.

Best because you figured it out, worst because things may have been so different for your family if it was figured out sooner. I'm very sorry about your mother.

Look around, ask questions and get healthy!
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
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Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 Di2011

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Posted 11 May 2012 - 05:09 PM

Please never apologise for the length of your post. We are here to help one another and the best way to do that is with information, as much of it as possible. I've bolded your post in the places where my experience matches yours. Hope it helps to help affirm your self-diagnosis.
I am 39y/o, mother, self-diagnosed, dermatitis herpetiformis (DH), and lots of other symptoms (gastro/neuro/psych) that have disappeared since going gluten free 12 months ago. Still DH but it is slowly clearing - you must check out the DH section on this forum.

I would just like to introduce myself and maybe get a little confirmation of my symptoms even though I KNOW that I have this condition that has plagued my family undiagnosed for generations.

I am a 34, married with two children. I have been having issues my entire life, but always assumed it was how most people were because pretty much everyone in my house growing up (aside from my father) had issues too. Starting in infancy, I had horrible colic. My mom used to say that I would scream for nearly 24 hours. I don't know how I got kind of normal, but I guess I did eventually because I finally stopped screaming.

My entire childhood I would have random bouts of EXTREME abdominal pain. The pain was so excruciating that I could not walk until the spasms in my gut would stop. Again, my mom chalked it up to gas and didn't think much of it. She had " bad gas" too. My mom also had the same horrible muscle cramps in her calves that would wake me up screaming in the middle of the night. I would jump up and down, grip the rails of my bed and wait for them to pass. "Eat a banana good", was all my mom would say.

I always seemed to be flushed on my face and neck. I remember when I would get new teachers they would ask if I was OK, and I would tell them yes I do this all the time. Nothing was ever anything to worry about.
I always had some sort of rash growing up. My mom called it "mad itch". I went to the doctor and he told me I was allergic to something in chocolate? I was only around 8 at the time and did not give him or his diagnosis much attention, neither did my parents. In middle school I got a different rash that consisted of huge scaly, itchy, oozing patches all over my stomach, thighs, and back * but mine was never really 'big/bad' until last year *. I could not participate in gym because of the fear of being seen while dressing out. The doctor showed me a picture in a big book and told me it was something with a funny name (I can't remember) I wonder if it was DH?????. The rash finally went away a year to 18 months later. Life continued in my house as usual.

My teen years were relatively normal, with occasional illnesses, and continued leg cramps but the horrible stomach aches and rashes seemed to go away.

I grew up and got married. We had two children and all was well, until a few months after having our second child. I woke up to the most horrible pain I had ever experienced in my life. I was throwing up green bile and thought I was going to die. I called my mom who was at this point suffering with Non Hodgkins Lymphoma along with thyroid disease and IBS. She said "good, it's your gallbladder". She should know, because her gallbladder had to be removed as a teenager. I had my gallbladder removed as well, I was only 26.

After my mom passed away in 2006 at only 54 years old, I started having the stomach aches again. I assumed it was due to losing my gallbladder a few years prior and stopped eating hot dogs and sausage for the most part. I also stopped eating seasonings from pouches because I was sure that MSG was giving me headaches.

I had never heard of Celiac until one day I left the TV on for my dogs. I came home to the 700 club playing and Elizabeth Hasslebeck was on talking about having the disease. It caught my attention as I realized that it sounded just like my mom.
I felt very sad to think that my mom could have potentially lived a much different life if she had known about this. For a brief moment I thought maybe that was why I had so many "little quirky issues". I quickly dismissed the thought.

I lived the next few years in denial. Horribly aching joints, stomach aches, deteriorating mental focus, muscle cramping denial.
I never really eat only just one thing but a couple of weeks ago my husband bought me a really awesome bread maker. I made bread. We ate sandwiches. I got stomach aches. I thought it must be something I ate, nothing unusual. One night I had a completely empty stomach and ate a nice big piece of PLAIN homemade bread. OH MY GOSH, I felt like someone was stabbing me through the belly button. It was horrible, and all I had eaten was a plain piece of bread. I remembered Celiac and looked it up on the internet. I could not believe all the symptoms that I, my mom, or my siblings had. In spite of the obvious I ate pasta the next day on an empty stomach, I was promptly visiting the bathroom * lots of these.

My husband doesn't want to believe it, but the writing is on the wall. I will not seek an official diagnosis because I don't want the diagnosis seen as a pre existing condition when I get new health insurance (don't have right now).

I apologize for the book, but I think I needed to see everything literally spelled out in front of me.

I went gluten free this past Monday. It didn't take long to realize I had been "glutened". I had a California roll. I never even thought about the imitation crab meat having gluten in it. Duh, I do now. My face looks like two apples and I woke up to a horrible Charlie Horse. I have learned a lesson.

I feel somewhat empowered and I am glad that there is a community out there to hopefully help me through the learning process.


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#4 1desperateladysaved

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Posted 12 May 2012 - 03:44 AM

I hope for you good health. It is such a relief to know that one is not crazy, making things up, and there is something one can do or not do to get better.
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#5 Kallismom

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Posted 12 May 2012 - 05:27 AM

Thanks for the responses. I still get sad about my mom and it has been nearly six years. I feel a huge amount of relief for finally being able to put all of these pieces together. I am so tired of muscle cramps. In the past few years I get them in my neck as well as my legs. They are usually so random and hit so hard. However, a couple of days ago after the California roll I started having tightness in my right calf and then yesterday and today I have been flung from sleep with horrible lingering cramps. My leg is cramping as I type this.

Thanks for understanding the length of my post. I find it so, so difficult to frame my thoughts into sentences. That never used to be a problem either, I used to be as sharp as a tack, but now loads of the time I feel stupid. I try to keep telling myself that it's not me, and that it will hopefully get better. I have been trying to read, read, read, but sometimes it is so hard to remain focused. I have to re read things at least twice to get anything.

Thanks for listening.
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#6 xjrosie

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Posted 26 May 2012 - 12:35 PM

I went through something similar. I grew up with stomach aches, unexplained pains, severe anemia, hair falling out. At one point in high school I was on pills to reduce the acids in my intestine because of the sever abdominal pains I had. None of my friends can remember a time when I didn't complain of not feeling good after eating.

My daughter, who is diabetic, had testing done. Her endocrinologist considers testing for Celiac Disease routine. Sure enough, her antibodies were astronomical. Her endoscopy and biopsy confirmed. Since then, another daughter was also diagnosed. Since I had two out of three daughters test positive, I went totally gluten-free in our house. As a result, I don't hate food. I have started to lose weight, and my anemia is not as bad - even without the supplements. I don't have stomach aches anymore, and I look forward to riding my bike because my legs aren't in extreme pain. My depression is not as severe, and my hair doesn't fall out like it did before.

If you know in your heart that this is the problem, you don't need a doctor's diagnosis to go gluten-free. Do your body and your family a favor. Best wishes to you if you decide to commit.
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#7 pianoland

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Posted 29 May 2012 - 06:57 PM

It might be a good idea to get tested before going gluten free (if you're already on the diet it won't be an accurate test).

My mom firmly believes my grandmother suffered from untreated celiac disease. She was never tested before she passed. After my diagnosis we realized it potentially could have been the cure for her many health issues. We have to realize that people are slowly becoming aware of celiac and its treatment. It makes me want to spread awareness even more because of stories like this.
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#8 MistyRG

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Posted 04 June 2012 - 07:19 PM

It's amazing to me how many light bulbs start going off when you figure something like this out. I know for me, I went back through my life and kept making check marks on the "list of symptoms!" It was amazing . . . and while I didn't want Celiac, it's nice to know that all these problems I have dismissed all my life actually have a cause!! And one I can take care of!!!

I am sorry about your mother. I lost my father to non-Hodgkins Lymphoma in 2001 (age 47), and it is one of the main reasons I pushed so hard for testing. I don't want to be undiagnosed and have something horrible happen.

Welcome . . . :)
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4/2012 - Odd rash appears
5/2012 - 3 out of 5 positives on Celiac blood panel
5/2012 - Skin biopsy - negative for DH - possible lupus???
6/2102 - Intestinal biopsy - positive
Gluten free since 6/2012

#9 cblackb1

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Posted 09 June 2012 - 05:11 AM

Kallismom,
You should still see a doctor for the endo testing to determine what damage has been done to your intestines. I had a similar childhood (colic, leg cramps, abdominal pain, thankfully, no rashes).
I went misdiagnosed for 48 years. At age 48 I was diagnosed with a blood test and then and endo as having Celiac disease. As a result of it going untreated for so many years I have hypothyroidism, and am lactose intolerant. The severe symptoms of Celiac's came come and go over the length of your life usually until some organ in your body if severely effected. I have been Gluten Free for 8 years, it is never easy and seems to never be certain. I feel much better, but since I have Hypothyroidism it is very difficult to lose weight. All my life I was very thin and had a high metabolism or so it seemed. Apparently since I had Celiac's I could eat anything and never gain weight, just felt poorly when eating certain things. Little by little I eliminated things from my diet that caused the most discomfort, but was never really certain about the reason they caused discomfort.
Once in my mid-20's after childbirth, I lost so much weight and could not keep anything down, or up, my doctor thought I had anorexia or bulimia. I was finally treated for ulcers and told I was lactose intolerant. After over 1 1/2 years of constant struggle with weight lose, I started to feel better. I truly survived on black coffee and water with some fruit for good measure. I had changed jobs just after having my son and worked in an office that was pretty much inside a large bakery!!! Not so good for a Celiac!! Looking back I was inhaling gluten all day and when I would have the weekend off I would start to feel better just in time to go back to work. It was about 1 1/2 years later that I started to feel better and now looking back I changed jobs and was no longer working in the office inside the bakery!
I will not go on with the rest of my story, but suffice to say at the age of 48 after several years of being treated by Hypothyroidism with swings from over to under active thyroid, my doctor sent me to an endrocrinologist. She took one look at my lonnnnnggggg medical history and simply asked it there were any members of my family who had Celiac Disease. I was tested both with a blood test and then an endoscopy and had a positive result for Celiac disease. It didn't make me feel better immediately of course, but at least I knew it wasn't in my head and there was something I could do about it.
I believe Celiac diagnoses we not common or maybe even made at all before 1993-ish. So many people suffered needlessly and in silence. Those of use who are "healing" need to get the word out and help others to find the correct diagnosis for themselves.
Good luck to you and I hope you will have your children tested soon and suggest any other blood relatives you know of get tested right away. Just because there are not symptoms don't mean they don't have Celiac disease. It can take some people years to develop outward symptoms.




I would just like to introduce myself and maybe get a little confirmation of my symptoms even though I KNOW that I have this condition that has plagued my family undiagnosed for generations.

I am a 34, married with two children. I have been having issues my entire life, but always assumed it was how most people were because pretty much everyone in my house growing up (aside from my father) had issues too. Starting in infancy, I had horrible colic. My mom used to say that I would scream for nearly 24 hours. I don't know how I got kind of normal, but I guess I did eventually because I finally stopped screaming.

My entire childhood I would have random bouts of EXTREME abdominal pain. The pain was so excruciating that I could not walk until the spasms in my gut would stop. Again, my mom chalked it up to gas and didn't think much of it. She had " bad gas" too. My mom also had the same horrible muscle cramps in her calves that would wake me up screaming in the middle of the night. I would jump up and down, grip the rails of my bed and wait for them to pass. "Eat a banana good", was all my mom would say.

I always seemed to be flushed on my face and neck. I remember when I would get new teachers they would ask if I was OK, and I would tell them yes I do this all the time. Nothing was ever anything to worry about.
I always had some sort of rash growing up. My mom called it "mad itch". I went to the doctor and he told me I was allergic to something in chocolate? I was only around 8 at the time and did not give him or his diagnosis much attention, neither did my parents. In middle school I got a different rash that consisted of huge scaly, itchy, oozing patches all over my stomach, thighs, and back. I could not participate in gym because of the fear of being seen while dressing out. The doctor showed me a picture in a big book and told me it was something with a funny name (I can't remember). The rash finally went away a year to 18 months later. Life continued in my house as usual.

My teen years were relatively normal, with occasional illnesses, and continued leg cramps but the horrible stomach aches and rashes seemed to go away.

I grew up and got married. We had two children and all was well, until a few months after having our second child. I woke up to the most horrible pain I had ever experienced in my life. I was throwing up green bile and thought I was going to die. I called my mom who was at this point suffering with Non Hodgkins Lymphoma along with thyroid disease and IBS. She said "good, it's your gallbladder". She should know, because her gallbladder had to be removed as a teenager. I had my gallbladder removed as well, I was only 26.

After my mom passed away in 2006 at only 54 years old, I started having the stomach aches again. I assumed it was due to losing my gallbladder a few years prior and stopped eating hot dogs and sausage for the most part. I also stopped eating seasonings from pouches because I was sure that MSG was giving me headaches.

I had never heard of Celiac until one day I left the TV on for my dogs. I came home to the 700 club playing and Elizabeth Hasslebeck was on talking about having the disease. It caught my attention as I realized that it sounded just like my mom.
I felt very sad to think that my mom could have potentially lived a much different life if she had known about this. For a brief moment I thought maybe that was why I had so many "little quirky issues". I quickly dismissed the thought.

I lived the next few years in denial. Horribly aching joints, stomach aches, deteriorating mental focus, muscle cramping denial.

I never really eat only just one thing but a couple of weeks ago my husband bought me a really awesome bread maker. I made bread. We ate sandwiches. I got stomach aches. I thought it must be something I ate, nothing unusual. One night I had a completely empty stomach and ate a nice big piece of PLAIN homemade bread. OH MY GOSH, I felt like someone was stabbing me through the belly button. It was horrible, and all I had eaten was a plain piece of bread. I remembered Celiac and looked it up on the internet. I could not believe all the symptoms that I, my mom, or my siblings had. In spite of the obvious I ate pasta the next day on an empty stomach, I was promptly visiting the bathroom.


I apologize for the book, but I think I needed to see everything literally spelled out in front of me.

I went gluten free this past Monday. It didn't take long to realize I had been "glutened". I had a California roll. I never even thought about the imitation crab meat having gluten in it. Duh, I do now. My face looks like two apples and I woke up to a horrible Charlie Horse. I have learned a lesson.

I feel somewhat empowered and I am glad that there is a community out there to hopefully help me through the learning process.


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#10 Newtoitall

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Posted 13 June 2012 - 09:13 PM

I love and hate stories like this, they make me feel a bit better about my shitty situation, but at the same time I hate it because so many people suffer so much, I have a hard time wrapping my mind around needless suffering like Celiac Disease =/

But it's nice to see you made it through all that!
Perhaps there is hope for all the situations out there.
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#11 RuskitD

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Posted 16 June 2012 - 03:55 AM

Likely you have heard the saying weight loss mantra "nothing tastes as good as thin feels". I have altered that to be "NOTHING tastes as good as Healthy Feels".

Seriously!

I all my life, I have had stomach/colon issues, as did my dad. I would say I had a delicate system. At least once a month for as long as I can remember I 'ate something wrong' and ran to the bathroom. I didn't know how right I was.
Through the years I had to cut out good foods. Cucumbers, peppers, melon, bananas, and anything with spices. All of these set me off with horrid heartburn.
But then, I could get heartburn on a drink of water also.
My diet was extremely limited. Trying to avoid heartburn mostly. Funny, but now that I am gluten free, I have no heartburn, and while my diet is limited, in another way, I have been able to add back these foods with no issues.

My father is gone now, but I wonder what life he might have had, had he been diagnosed. He was one to seek knowledge and be proactive on his health too, but he never had internet, and didn't have access to information like we do. His food was organic, because he was a farmer. He was very careful to eat wholesome healthy foods.
But bread is the staple of life, right? His mother thought so. She came over through Ellis Island as a young woman over 130 years ago. She had bread at every meal, and feeding a large family on little, she always filled the boys up with bread.

Dad lived a life of stomach distress, and always ate bread to 'buffer' other foods from bothering him. Queasy stomach ? Crackers. I did the same. I always thought my problem was stomach acid (it was), and the bread would help absorb it and calm the problems. Little did we know, the bread and crackers were killing us.
All dad's life, bouts would come where He would spend hours in the bathroom passing mucus. From the time he was 50 he suffered severe depression. He got weak and wasted in his last 20 years. What I now believe, and he could have never guessed, was that the staple of life, the thing we counted on to help our issues, was the thing causing our issues.

Reading the list of side effects of gluten intolerance/Celiac, it is mind blowing! I can see why the doctors miss Celiac. They are treating symptoms, unaware that there is one simple underlying cause.

Stick with your gluten-free life. Its not easy, in that you will screw up unintentionally. Things can sneak your way when you are being so careful!
Your body could be like so many of us and begin to reject other foods like corn, and soy and you might begin to wonder if there is anything you can eat that won't set you back. Hang in there! It will get better!
Your body also will go through many changes, and you will wonder if it will ever quit. This forum assures us it will. Healing is a process, and doesn't happen overnight.

I made a list of all the health issues, big and small, that have gone away with being gluten-free. On the days I am 'blue' or not feeling well in some way, I read that list of 25 things, to remind myself just how far I have come. Today may be a bad day, but it sure could be worse, it could be like it was before I was informed about gluten.

I personally never eat out, and take my own food to family dinners. I don't expect others to make concessions for my problem. But also, I am scared, to be glutened. I want to LIVE the rest of my life, and not exist like my dad did.

You may start craving gluten products. Funny, I was not a huge eater of carbs (gluten) before stopping gluten. But my first week, I felt like I lost my mind. I don't think a drug addict coming off crack could have had more cravings than I did! Just remember, its your body getting better, its your mind learning to live without poison! It will pass!!!!!! Mine lasted three days of horrid cravings. About two weeks of mild ones.

Good luck to you! and blessings for a healthier future!
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#12 mamaupupup

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Posted 18 June 2012 - 07:44 PM

Hi there,

I am almost in tears reading your story. This hits really close to home--and I hope I don't make you cry. I hope I do give you hope for you, your own kiddos and all the lives you will touch by helping others recognize the symptoms of Celiac!

My twin five year old girls were diagnosed with Celiac in March. My GI called me today with my endoscopy results: I have Celiac Disease too. And, since I'm 45 we also did a colonoscopy while I was under. He told me today that the polyp he removed was precancerous and was an aggressive type. I feel like my little girls saved my life.

I'm thinking of you. I'm sure your Mom is so proud of you and thankful that you are figuring out this complex health puzzle.

Thinking of you!
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