Just Need To Vent... To Those Who Understand!

[lvtelleria]

So I have experienced an extreme variety of symptoms for the last 5 1/2 yrs.

These symptoms come and go and vary in intensity.

[*]constipation

[*]extreme bloating

[*]extreme gas

[*]acid reflex

[*]heartburn

[*]sensitive / upset stomach

[*]extreme abdominal pain

[*]indescribable "sick" feeling

[*]Extreme weight gain (40 lbs in 1 1/2 yr)

[*]low immune systems (cold for weeks at a time, at times monthly)

[*]increased appetite

[*]joint / muscle pain

[*]insomnia / narcolepsy

[*]Upon awakening - the "hit by truck" feeling

[*]extreme fatigue

[*]muscle weakness

[*]numbness/tingling in limbs

[*]extreme muscle twitching

[*]extreme depression (unexplained)

[*]missing periods

[*]anxiety

[*]blurred vision

[*]extreme mental fog / confusion

[*]impaired short term memory

[*]irritability

[*]migraine headaches

[*]chest pain

[*]re-recurring urinary infections

I must mention, I did not make any type of connection between symptoms until recently. I just couldn't believe I was experiencing so many symptoms at such a young age ( going 27 yrs old). Other didn't believe it, either. Am I going crazy??!! My health issues have taken a toll on my social life, love life and career... I just want answers!

I have had many doctors, none of which suggested looking into celiac disease or gluten intolerance. Although, IBS was the most popular diagnosis and second to that there was no diagnosis at all On going symptoms, pain, and frustration led me to research, research, research. At times, I felt I was a med student -- spending hours studying possible conditions. In my opinion, I needed to take the situation into my own hands. After all, I had spent thousands of dollars (and still in debt) on doctors, procedures (colonoscopy, endoscopy, ultra-sounds), meds, and still no diagnosis. Its been a very difficult mountain to climb.

Along the way,

I've had a doctor tell me " you know... some people tend to perceive pain differently than others". I had another doctor tell me abdominal pain was from digestion...bowel turning the corner in my intestines (seriously?? lol) The same doctor put my life and the life of thousands (~ 40,000 -- over 7 yrs) at risk by reusing syringes. Needless, to say the that doctor and other involved are now facing jail time. I still owe them $1,000 (which don't feel I should have to pay back).

It has also been difficult dealing with family members and friends. I know at times they didn't believe me or were just sick of hearing about it. About a year ago I decided to go it alone. I stopped talking about it.

It was about 3 months ago that I started to get really sick. I felt as though my body was shutting down -- literally. I have never felt so scared in my life. I visited the ER and nothing -- no diagnosis. The doctor to me to rest. My body started to recovery slowly after a few weeks. About the same exact time that my research paid off. I came across celiac disease and was amazed. I traveled to San Diego and participated in a celiac disease study which included a questionnaire and a blood test. A waited a week for the results only to be disappointed -- Negative. I didn't know what to do. I was for sure I had celiac disease. My symptoms so closely matched so of celiac disease. With no insurance, I decided to go gluten free rather than pursuing further testing. Its been two months on the diet and I feel great! I've had some "bad days" but feel like there is light at the end of the tunnel. I now have insurance and am considering the genetic testing??

Along the way, I have felt defeated, insulted, frustrated, angry, hurt -- you name it! Its been one crazy, painful, emotional roller-coaster. Now, I feel hope.

Thank for taking the time to listen!

-- M

Support and Advise is much appreciated!

-- M

[cyberprof]

M, you have been through the wringer. I hate it when docs don't know the answer, so instead of saying that they say it's in your head...and they mostly say that to women!

As you can see from my signature, it's possible to be celiac and have negative blood work. It's also possible to have celiac and have a negative endoscopy/biopsy.

Since you feel better gluten-free, then that is your answer. The diet isn't harmful and while it may be a pain, those of us lucky enough to feel better don't care that it's a pain.

You can consider yourself gluten-intolerant or if you get the gene test and it's positive, perhaps you'll consider yourself likely a celiac. Some docs will diagnose based on dietary response and gene presentation, but most won't.

The only problem you'll have is that you don't have a diagnosis (which could be good in the case of life insurance etc.). Or if you still have problems, you may find that docs don't "believe" that you are celiac, want you to do a "gluten challenge" and endoscopy, or question why you'll go gluten-free without good proof. Just ignore them. If you have another problem, like gallstones or thyroid issues, just minimize talking about being gluten-free/potential celiac and focus on those symptoms.

If you can get the gene test, I'd say go for it. It's good to have that knowledge, especially for your kids/future kids and relatives.

Best of luck to you. It's great to feel better. This is a great place to get help and ask questions.

~Laura

[lvtelleria]

Thanks for the advice!

I just found this site and feel it will prove to be a great resource. This is my first post and also the first time have voiced my situation to anyone. I figured this would be the place to do so.

M, you have been through the wringer. I hate it when docs don't know the answer, so instead of saying that they say it's in your head...and they mostly say that to women!

As you can see from my signature, it's possible to be celiac and have negative blood work. It's also possible to have celiac and have a negative endoscopy/biopsy.

Since you feel better gluten-free, then that is your answer. The diet isn't harmful and while it may be a pain, those of us lucky enough to feel better don't care that it's a pain.

You can consider yourself gluten-intolerant or if you get the gene test and it's positive, perhaps you'll consider yourself likely a celiac. Some docs will diagnose based on dietary response and gene presentation, but most won't.

The only problem you'll have is that you don't have a diagnosis (which could be good in the case of life insurance etc.). Or if you still have problems, you may find that docs don't "believe" that you are celiac, want you to do a "gluten challenge" and endoscopy, or question why you'll go gluten-free without good proof. Just ignore them. If you have another problem, like gallstones or thyroid issues, just minimize talking about being gluten-free/potential celiac and focus on those symptoms.

If you can get the gene test, I'd say go for it. It's good to have that knowledge, especially for your kids/future kids and relatives.

Best of luck to you. It's great to feel better. This is a great place to get help and ask questions.

~Laura

[ladydianab]

M- I am right there with you. I just posted the first time the other day. I too, started to list the problems I have had over the last few years. Without re-listing everything I started to piece together the gallbladder disease and removal, horrible abdominal pain and then a hysterectomy, constant diarhria diagnosed as IBS and finally the over horrible aches and pains that strangely started after my hysterectomy, and all that was diagnosed with fibromyalgia.

I actually had an acquantace who mentioned celiac and gluten intolerance. I suggested this to my doctor but the blood test came back negative. He said I don't have celiacs so I can eat gluten, no problem. I am gradually feeling worse with the aches and pains.

I don't talk with my friends or family anymore because I am tired of discussing how I feel and having them "scoff" at my latest "theory" of what's wrong. Keep hanging in there! and don't give up on finding a way to feel better. YOU are NOt alone!

Diana