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My History

NancyL

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NancyL Explorer
NancyL
Posted

I started my journey on the board with this post about being overweight + Celiac and whether the two can go together.

I'm 42 years old and mother to 3 boys (the two youngest at almost 4 yo and 6 are biological) with a history of endometriosis, miscarriages and a tubal pregnancy.

In my early 20's, I was very thin. At 5'4" (but big boned), I was about 110 pounds but looked anorexic because that was too light of a weight for someone with my shape but I was dancing. All.Of.The.Time... 7 nights per week. I remember even back then having these debilitating stomach issues that came and went. They didn't last as long as they do now and resolved on their own overnight. I remember thinking "if I could only pass a little gas, I'll feel better"! LOL

Since my early 20's I've been a big kidney stone sufferer so I know pain and I know kidney stones VERY well. I've had over 20 documented stones and numerous surgeries to remove boulders.

Also in my early 20's I was in a very, very bad car accident. This resulted in my first 2 disc neck fusion 8 years ago.

Four years ago, my pain doctor was extremely surprised to discover that hip pain I was having was due to pretty advanced osteoarthritis in my hips.

I've been a migraine and chronic headache suffer for a long time as well. We've always assumed this was from my neck. I also was suffering from anemia so I had uterine ablation 3 years ago(no followup recheck).

Last year, I developed high cholesterol but even though the cardiologist said I couldn't control it with diet alone, I did. Her most concerning argument was that even my "good" cholesterol was way too high which to her proved I had a genetic pre-disposition for heart issues (my father died relatively "young").

I also have a hiatal hernia and have for 18 years and been on meds for it since then.

This past summer, I began having chest pains. I had an endoscopy and an NG tube 24 hour test done (avoid this if at all possible!). Those did not explain my chest pains so they did CT scans with contrast and discovered that the discs above and below by 8 year old fusion have given out. I had to have 2 more discs fused this past October. They were causing arm pain, hand numbness and supposedly the chest pain I had experienced.

In the meantime, the severe stomach pains have sent me to the E.R. for possible appendicitis several times, each time my appendix looked fine. I've had diarrhea EVERY DAY for a year and a half. I've now had 4 colonoscopys due to family history of polyps, intermittent and unexplainable stomach pain and now polyp history of my own. My last colonoscopy was last Thursday. I was having stomach pain the day before my cleanout, the day of and the day after so no bowel obstruction.

I'm a mess. In the past 4 years, I've gained 50 pounds! I have no energy and am sick and tired of being sick and tired. I've joined "Zumba" classes to try to increase my energy. I am hoping to pull all of this together and Celiac is the closest I have to a possible answer. I did check with my gastro doc first before committing to a gluten free trial. If Celiac and Gluten Intolerance is not it, my journey for relief will continue but gluten free won't hurt, isn't expensive and can be used by my doctors as a diagnostic tool.

For now, I'm not giving up milk products but will (don't consume many anyway), if gluten alone doesn't do it. Before I give gluten free up, I will try lactose with it to see if the two combined give me some relief.

So in summary: I've had my gall bladder and appendix checked, have recurrent kidney stones, fertility issues (that's ok because I'm done), anemia, spinal injuries, chronic headaches and long term bowel issues and am fraught with fatigue.

I "think" that's my whole story. I don't think my doctors talk to one another enough and I'm tired of procedures that may not be performed for the right reasons. I'm sure I left stuff out but this is enough of a novel for a starting point in my journey to find the cause to that which ails me. :D

If you read this, you are either saintly or really bored. LOL

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IrishHeart Veteran
IrishHeart
Posted

Hi Nancy!

I'm neither saintly nor bored :D ... but I AM interested! I feel for you because your story--like mine--is fraught with frustration, pain and a search for answers. Everyone here has had a journey unique to him/her, yet there is one constant....gluten.

If gluten intolerance is an underlying issue related to your health problems, then a gluten-free diet will be beneficial. There are over 300 symptoms and other autoimmune diseases associated with gluten intolerance, and many of your symptoms are included in that list and may well be related.

Given your history, I am surprised your gastro doc didn't do a biopsy or a celiac blood panel. Not that they are always reliable, as many on here can attest. My blood work was NEG and I refuse to poison myself with gluten again for a biopsy that he should have done from the beginning.

I guess all I can say is go 100% gluten-free and see if you get relief! (It is often suggested that dairy also be avoided at first as well) I was a mess myself for a long time--a lifetime-- and little by little, I am seeing relief. Having your diarrhea CEASE will be a good indicator and (if you are like me) a cause for celebration!! :D

Just know that it takes TIME. This is no easy fix and patience is necessary. I have learned that from all the wonderful people on here. They are a huge source of information and encouragement. I could never have done this without them.

Good luck. I hope you feel better soon! :)

MsCurious Enthusiast
MsCurious
Posted

Hi Nancy!

I'm neither saintly nor bored :D ... but I AM interested! I feel for you because your story--like mine--is fraught with frustration, pain and a search for answers. Everyone here has had a journey unique to him/her, yet there is one constant....gluten.

If gluten intolerance is an underlying issue related to your health problems, then a gluten-free diet will be beneficial. There are over 300 symptoms and other autoimmune diseases associated with gluten intolerance, and many of your symptoms are included in that list and may well be related.

Given your history, I am surprised your gastro doc didn't do a biopsy or a celiac blood panel. Not that they are always reliable, as many on here can attest. My blood work was NEG and I refuse to poison myself with gluten again for a biopsy that he should have done from the beginning.

I guess all I can say is go 100% gluten-free and see if you get relief! (It is often suggested that dairy also be avoided at first as well) I was a mess myself for a long time--a lifetime-- and little by little, I am seeing relief. Having your diarrhea CEASE will be a good indicator and (if you are like me) a cause for celebration!! :D

Just know that it takes TIME. This is no easy fix and patience is necessary. I have learned that from all the wonderful people on here. They are a huge source of information and encouragement. I could never have done this without them.

Good luck. I hope you feel better soon! :)

Irish Heart,

Thanks for posting this...it gives me hope and encouragement! I don't know if the genetic markers will show up or not, but after knowing what I've been through for a lifetime, like you... even if its not there, I am going to try gluten-free diet, because it could be a gluten intolerance. I am so hopeful, and so eager to start the gluten-free diet, even though I'm sure the transition will be difficult at first, I can only imagine how wonderful it must be not to feel sick, and have diarrhea every day of my life. I'm so ready to be DONE with that! I wish my test results would hurry up, so I can start to feel better!

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