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Sharing Symptoms

billy

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billy Rookie
billy
Posted

Hi everyone. I'm an undiagnosed celiac embracing the many personal stories on this site. I would love to hear from those who share my symptoms, as I've been misdiagnosed with many diseases/conditions for the past five years (I'm 28).

I've been lactose intolerant (so has my father and his mother) since I was a small child.

I started with the typical gastro celiac disease/wheat intolerance symptoms either after passing my first kidney stone (I've passed five) or a cyscoscopy surgery.

My father's father also complains of celiac-like symptoms, but his one blood test was negative (he also suffers from heart disease, which I've read can be related). My mother's father died from colon cancer and my father and his mother had colitis.

I've also been suffering from amonorrhea for the past five years and have been on HRT for the last three. This has been misdiagnosed as many things...nothing right so far!

I was diagnosed with severe osteoporosis two months ago by a doctor who can't understand why I have it; I suggested the possibility of a celiac disease connection and he agreed I need to see a gastro dr, which is my next step...I'm hoping for a biopsy since I was given the blood test (negative) two years ago. I was told I didn't have celiac disease, but that I was probably intolerant...I know I am!

Some other symptoms: hair loss, weight loss, leg cramps, joint pain in my knuckles, fatigue, headaches, occassional red rash on upper arms/shoulders, and mini "heart attacks" that hit me while at rest (this has happened since I was young and have been defined as "growing pains" or a pinched nerve; however, I've read a couple of other celiacs experiencing this?).

I would really love to hear from anyone. I've been pushed in so many directions by my doctors that I'm looking for any comforting signs. :( Looking forward to your stories... billy

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lovegrov Collaborator
lovegrov
Posted

Since it's been two years you should do the blood test again as well. Then do the biopsy but make sure the person doing knwo to take 10 or more samples and from different areas of the small bowel.

Finally, even if the tests are borderline or deemed negative, if I were you I would try going gluten-free anyway.

richard

Dwight Senne Rookie
Dwight Senne
Posted

Yes, by all means, get the endoscopic biopsies. I would also request that they measure your stomach acid right away. You have some symptoms of low acid. You're not on any heartburn meds are you? Those work by reducing the level of acid in your stomach (which can be very detrimental to overall health).

billy Rookie
billy
Posted
  • Author

thank you for mentioning the low stomach acid! i've done some reading on it and it does seem to make sense with some of my symptoms. i've suffered from chronic heartburn for as long as i can remember; my mother has gerd, but i've never been tested despite our similar ailments. i've just always lived on tums to fight the indigestion/heartburn! i'll bring this up with my new gastro doctor who i see in two weeks. thanks again! :) billy

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