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Why Did I Have To Figure This Out?

Spruey Stuey

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Spruey Stuey Newbie
Spruey Stuey
Posted

Hi,

I am new to the site but was recently diagnosed with gluten sensitivity (see below)

Why did I have to figure out that I had gluten intolerance?

I went to scores of doctors over the last 15 years with many/most of the presenting symptoms of celiac/gluten sensitivity (ringing in ears, unsteady gait, dizziness, tingling in my legs, loose stool

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

You're right that doctors can easily miss something... no matter how obvious it should be.

In November 2006 I was 17 weeks pregnant with my second child when I went in for a routine ultrasound and found out there was no heartbeat (even though I heard the heartbeat at 13 weeks). In a "normal" person, the chances of this happening are less than 1%. The attitude of my midwife and OB was basically, "These things happen... you already have one living child, you can have another one." They kept telling me over and over that it was probably a chromosomal abnormality, even though the DNA test came back with no results.

To make a long story short, for the last two years I've been on a QUEST to figure out what happened to Jibril. And... after finding out that I have autoimmune hypothyroidism, a celiac gene, and a gluten sensitive gene... I'm pretty certain that my loss occured because of an autoimmune problem. Even though my TSH was sky high (and untreated hypothyroidism increases your risk of pregnancy loss), nobody suspected it or tested my TSH until I had a routine physical in July. I'm still trying to get some testing for antiphospholipid syndrome, an autoimmune disorder that clusters with the DQ7 gene.

I have spent a lot of time being very frustrated and angry with these "medical professionals." :angry: At times, I've even thought about a lawsuit. But... I've realized that no matter how good a doctor is, you know yourself better than anyone else. Losing Jibril was absolutely devastating to me. I would have done anything to figure out what happened. To the midwife and OB it was "just a loss." Tragic, but it happens.

Anyway... at least we finally have some answers and can work on improving our health :)

mushroom Proficient
mushroom
Posted

Most doctors seem to have been programmed to believe that the incidence of celiac is very rare and it seems to be the LAST thing they think of testing for. Join the rest of us who have diagnosed ourselves when no one in the medical profession was able to do so. Only a few doctors seem to be clued in as to its actual prevalence and the wide variety of symptoms associated with it (and the concomitant risks). So feel free to rant away about it, like most of us have done. Maybe by next century everyone will have celiac disease if they keep tinkering with our food the way they are doing; then gluten will be removed from food and the diagnosis will not be necessary. I know, this is a nonsense, but makes about as much sense as some of our wrong diagnoses :P

jerseyangel Proficient
jerseyangel
Posted

Mother of Jibril,

I just want to say that I'm terribly sorry for your loss. Your story just broke my heart.

To you and the others here in this thread, I understand your anger and frustration. I was continually misdiagnosed for well over 20 years and it took a while to get over the resentment I felt that no one ever thought to test me for Celiac. I was pretty bitter, but slowly and with the help of my husband and this board, I've found a way to make peace with the years lost to constant physical and emotional illness. It changed me forever, and not all of it in a bad way.

I had to read about Celiac myself by chance and ask to be tested. It shouldn't be this way. I've been around here for over 3 years now and I am heartened to read of many more people being tested/diagnosed in the early stages of the disease.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
I was continually misdiagnosed for well over 20 years and it took a while to get over the resentment I felt that no one ever thought to test me for Celiac. I was pretty bitter, but slowly and with the help of my husband and this board, I've found a way to make peace with the years lost to constant physical and emotional illness. It changed me forever, and not all of it in a bad way.

Yeah... the last two years have been REALLY tough :( I'm so sorry that it took you 20 years to get some answers! My mom has been suffering from autoimmune problems for a long time and doctors kept telling her "it's all in your head." It didn't help that she didn't have health insurance for about a decade.

I really have been changed forever too. That's why I decided to use "Mother of Jibril" as my username. I'm definitely not the same person I was before Jibril came into my life! Some of the changes have been really good. I don't take anything for granted. I treasure every day with my kids and my husband. I don't get so stressed about my job... it's just a job. It's not life or death. I've learned to take MUCH better care of my physical and mental health. That's how I stumbled across my hypothyroidism and gluten/dairy issues. I don't like having an autoimmune disorder, but I'm grateful to be aware that it's going on.

Getting back to Spruey Stuey for a second... anger is not a bad thing. If you use that energy well it can lead you to all kinds of positive changes. :)

wowzer Community Regular
wowzer
Posted

I have often wondered the same thing myself. I have had many itchy rashes. I even ended up in the hospital with one of my outbreaks. I ended up figuring it out myself as many here have. Look at the bright side, at least you figured it out. For me the hard part now is avoiding crumb trails, etc. that can gluten me.

darlindeb25 Collaborator
darlindeb25
Posted
Why did I have to figure out that I had gluten intolerance?

I think, if we took a poll, you will find the majority of us figured this out before the doctors did. It's true, doctors are not trained to watch for this, maybe now they are, but they haven't been. Two of my sons had their doctor look at them and say, "You are not a celiac, you don't look like one!" Do we have 2 heads? A doctor can not just look at us and tell us we do not have this disease.

I too, and my sister, both were sick for 20 yrs, before finding celiac disease. My brother in law found it on the internet. My sister went to her doctor and requested to be tested. Her doctor laughed and told her it wasn't possible she have celiac, because it was too rare. He was shocked to find out she was correct. We have been gluten-free now for over 8 yrs, our father, 4 yrs in November.

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miss vivian Newbie
miss vivian
Posted

Whoa. This strikes a chord with me, too.

I went to a primary care in March - was told to take Prilosec - then I went to a Neurologist - because I couldn't take the sleep disorders and internal tremors anymore. he told me I was anxious....

So, I picked up the phone and called a gastro doc. At first, the doc I wanted to see was booked for months, and I knew I couldn't wait. I KNEW something was wrong!!!

Finally saw a gastro doc - and lo and behold, a simple BLOODTEST revealed that I have Celiac Disease!

I was so mad, that I called my primary care doctor and she wanted me to come in to her office... What for? I had seen her in March - no need to see her again.

YEARS of complaining and all it took was ME calling a gastro ON MY OWN. Luckily I don't need referrals..

Mad? Yeah, I guess you can say that I am alittle mad that I wasn't taken seriously.....

Glad to be here now and glad to read all of your stories and experiences...

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