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Newtoitall

How Did It All Start For You.

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What caused you to get diagnosed?

Chance?

A series of tests?

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Hi. I had constant abdominal pain since having a hysterectomy. After 8 months of complaining to my Dr and being told to do pilates, I became extremely fatigued and had bad D (like 8 times a day). I went to drs and insisted on tests, starting with iron which came back as positive. I had ultrasounds and then a colonoscopy and a gastroscopy, biopsy came back as positive for celiac disease.

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I meant iron came back as positive for anemia!

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My sister found out she was gluten intolerant so I requested bloodwork. To my shock and horror it came back off the charts positive! I hadn't felt ill or anything so I went ahead with both the colonoscopy and gastroscopy for two reasons - to really make sure I indeed had celiac disease (I was in denial) and to see if there was anything else at the same time while I was medicated (did not remember a thing), anyway. My biopsies were positive. So, initially I felt like I was sentenced to prison because I love gluten SO MUCH. I felt forced to go gluten-free but have never once cheated. Ever. I find it hard at times because I wonder if I have ever accidentally been glutened. I am as careful as is humanly possible but cross contamination and hidden gluten can be issues. :huh:

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anemia followed by increasing GI distress. diagnosis was somewhat slow, so developed other problems and lost considerable weight during that period.

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My menstrual symptoms, which had been just bad cramps, got worse and worse and suddenly were causing me to vomit predictably on my first day. That went on for a year, and by that time the one day had begun to spread to the first four days, and then before I knew it I was sick every day, period or not, and couldn't keep any food down. The mornings were worst and I would feel better towards the end of the day, and then later it went to all-day nausea and vomiting as well as malabsorption D. Waited two weeks, went to the doctor who sent me for a hundred tests. By this time I weighed about 80 pounds (I'm 5' 2"). Ended up having negative celiac bloodwork (hmm, hadn't eaten anything but applesauce in the month beforehand). I had the genetic tests done (they only test for DQ2 and DQ8) and was told those were negative. At this point my gastro told me to go gluten-free and see what happened, even though I had yet to have my biopsy. He was feeling like I couldn't afford to lose any more weight during the few weeks we had to wait to get a biopsy. I started to improve slightly, and then when I had my endo it was inconclusive. Over the next 6 weeks I continued to improve and gain weight and my gastro decided to diagnose me based on all that. He seemed to believe that I had healing damage in my gut.

So from the time I first started to show symptoms to my final diagnosis was about 14 months, and I was only super-sick for 2 or 3 of those.

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I started a new job and went to my work's annual benefits fair that was held 2 weeks after I started my job. They had a "heel testing" station where you sit down and put your foot in a machine so they could measure your bone density. The women in my office were doing it, and I was new, so I joined in. The test took a few seconds and everyone was shuffled in and out. After my test, the woman called me aside and told me to go see my doctor as soon as possible because my bone density was that of someone 2x my age (I was 37).

I went to see my doctor and after several tests she diagnosed me with osteoporosis. The fact that I was 37 was what led to the diagnosis of Celiac. I had other ongoing health issues, but we didn't put them together until the osteoporosis diagnosis.

I would have never found out if I hadn't been hired right before the annual benefits fair and had the heel test.

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What caused you to get diagnosed?

Chance?

A series of tests?

40+ years of misdiagnoses ,unnecessary /ineffective treatments,unnecessary surgerys and procedures, doing spinal tap for MS,doctors telling me it was all in my head,psychiatrist wanting to drug me, ect....

the whole time becoming more and more ill....

Finely a dear friend told me about this web site ,I came here and read and asked questions and was able to learn the right questions to ask and tests to ask for.

Then I INSISTED my PCP send me to a GI doctor in a major city (I live in a very rural area) she was not happy about it but I INSISTED quite FIRMLY :angry:

I got an appt with my now GI Doc and walk in to her office with a 4 inch thick folder of test results and information(including CAT scans , MRIs, DEXA scan results,lab test results and reports on every surgical procedure I have had)

She read my folder talked to me for about a hour and said "You have celiac's "

I told her when I was leaving that she had given me more in that hour than 40+ years of doctors had been able to. She said "that was because she had all the information in front of her".

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The short story? I got a "lymph node virus" (who's ever heard of that?) from my husband that was very painful in my gut. His got better in about 2 weeks, mine got a bit better, then WAY WORSE. As in, within a period of 6 weeks, I went from 1/2 percocet every 4 hours to 1 percocet every 2 hours. Then I ended up in the ER because the pain was so bad (They gave me three shot of deloudid--that took care of the pain!). That was the night I had pizza and birthday cake. Go figure! :rolleyes: And then I took medical leave from work, got an appt. with the GI dr, and was diagnosed about 3 or so weeks later after + blood tests and biopsies.

But boy did celiac explain SO much else that I had come to accept as 'normal.'

-Daisy

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Feb 2010 I noticed tingling and burning in hands and feet that was getting progressively, dramatically worse. Weight loss, no real typical GI issues but horrible nausea and no appetite. Crushing insomnia, depression and horrific panic attacks. Headaches. Dr. thought stress but sent me to neuro for EMG. He diagnosed a small fiber neuropathy, ran a million blood tests (really to rule things out) and my TTG was off the charts and my biopsy was positive...

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I found out I had issues with gluten (non diagnosed as yet) totally by accident.

Depression with hospitalisation and drug treatment, various counsellors, psychiatrists for many years. Skin problems, though nothing on the scale of DH for years.

I got shingles back in march 2010. Felt really ill for a long time afterwards so went to see the doctor. He diagnosed post viral fatigue and said it would pass. It didn't, so I researched what I could about healing up post viral. I came across a book about adrenal fatigue which suggested that certain foods could cause problems. I quit gluten for a couple of weeks, felt a little odd, ate a wheat biscuit and blew up like a balloon. So, I cut gluten, but over time I found all of the other things that had caused me major problems really improved. I was able, after years to totally come off antidepressants, medication for anxiety and sleeping tablets. My period which had never ever been regular, became regular.

It was only really after a severe reaction caused by an accidental glutening I thought about getting a diagnosis and that's where I'm at now.

Previous to all of that my only real troublesome GI symptom was constipation and haemorroids (I don't think that's how you spell it but meh) The rest, like the wind and the occassional tummy ache I'd just come to accept as being normal for me.

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