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burdee

What Were Your Pre celiac disease Dx Misdiagnoses?

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Before I finally self diagnosed my gluten intolerance and then ordered Enterolab tests which diagnosed my gluten and milk sensitivities and celiac gene, I was diagnosed by various docs with eating disorders (anorexia and bulimia) and gastritis (with reflux). I also took many courses of antibiotics which were prescribed for bladder infections.

Long after I eliminated gluten and dairy, I had ongoing symptoms. After I eliminated soy, egg and cane sugar (diagnosed by ELISA test) and treated for a Klebsiella infection, I STILL had intestinal symptoms, albeit less symptoms. I eventually learned that the antacids and the acid blocker meds which had been prescribed for 'gastritis and reflux' (which were really caused by gluten and other allergies) destroyed enough of my stomach acid to cause perpetual indigestion and malabsorption symptoms (gas, bloating and cramps after eating proteins and fats). The antibiotics which I took for infections destroyed enough of my good bacteria that I got a Klebsiella infection. Even taking a course of high dose probiotics after treating the Klebsiella infection wasn't enough to keep my probiotic levels high. I picked up another food born bacteria and my probiotic levels nose dived again. My primary symptom of low good bacteria was constipation (low motility) despite consuming lots of fiber, fluids and magnesium. Finally after 2+ weeks of REALLY high dose (170 billion organisms daily) probiotics, I am FINALLY symptom free, IF I take digestive enzymes with HCl to supplement my low acid stomach. I don't even want to talk about all the shame, time and expense I wasted on therapy for eating disorders when I really had food allergies and celiac disease. I suspect I used 'weird' eating habits to cope with ongoing painful symptoms.

After eliminating my allergen foods, most of my ongoing symptoms were caused by treatments for real and misdiagnosed conditioins. So I wonder: WHAT WERE YOUR MISDIAGNOSES? DID THE TREATMENTS FOR THOSE MISDIAGNOSES CAUSE ONGOING PROBLEMS?

BURDEE

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I had my gallbladder removed four years ago. (Of course, my symptoms didn't resolve after the surgery because gluten was the problem, although the pathologist reported a chronically inflamed gallbladder... lots of gluten intolerant people have gallbladder problems, so it probably would have healed!)

With no gallbladder, I get no timed infusion of bile with my meals. I get a slow constant drip of bile instead. This becomes a problem when I decide to eat something reaaaaaaaaallllly fatty in large quantities. Like a regular sized order of french fries with a hamburger patty. Almost as bad as being glutened. I know this isn't so bad; it's definitely aversion therapy toward portion control. And I know a person can live a long healthy life without a gallbladder. But I still feel robbed somehow. I get keloid scars from any wound, so I've got angry red bumps on my abdomen from the procedure.

Let's see... other misdiagnoses/possible diagnoses that didn't have long term effects:

gastric reflux (did a short sentence on the "purple pill" which didn't work)

hiatal hernia (you're just gonna have to live with it, kid!)

depression (do you want some zoloft with that?)

gastroparesis (stomach emptying scan, i.e. the radioactive breakfast test, ended up being normal)

"spastic colon" (same OBGYN that tried to zoloft me)

new mother fatigue (because all new moms should feel as tired as you!)

IBS (of course)

and my all time favorite: "you're going to think every twinge is a problem if you scrutinize yourself looking for symptoms."

I think the longest-term problem from not being correctly diagnosed is time taken away from my husband and daughter when I was too tired to interact with them fully. My husband is my best friend, but even now that he knows exactly what happened to me, he can't help but be hurt that he married a vibrant 20 year old and spent 10 years living with a lump on the sofa.

-Shannon

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I'm sorry to hear you were a gall bladder misdiagnosis victim. My SIL also had a perfectly healthy gall bladder removed. There were no gall stones, just a healthy gall bladder. Her doc insisted that she MIGHT develop gall stones, had he not removed her organ. Her symptoms worsened AFTER the gall bladder surgery. She later was diagnosed with food allergies and Candida by my naturopath's ELISA and stool tests for bacteria, yeasts and parasites. Treating the Candida and abstaining from food allergies relieved her symptoms.

Thanks for reminding me of a couple more misdiagnoses and 'mis' treatments. My 'eating disorder' therapist, who wouldn't talk about food or physical symptoms, decided I was 'depressed' when I told her I would not see her again. She was a family systems therapist, but my parents were dead and my only sibling rarely communicated. So I suffered through Zoloft for about 2 weeks for 'depression' until I stopped taking that pill which caused nausea, sleep problems and irritability. I didn't have long term affects from Zoloft, because I got off soon enough. However I later was prescribed serzone for SAD. That SSRI made thinking clearly and speaking very difficult. I 'lost' words as well as all feelings. I slowly tapered off serzone after almost 2 years. I still 'lose' words sometimes, but not nearly as often as when I took serzone. Sunshine and full spectrum lights relieve SAD symptoms.

I forgot about the IBS misdiagnosis and stupid IBS diet recommendations. My doc recommended I eat more wheat bran for constipation and drink more milk to prevent osteoporosis. My HMO docs say that to every women over 40. So for years before I discovered I had celiac disease, I dutifully ate Shredded Wheat and Bran cereal with milk and added soy protein. I was later diagnosed with gluten intolerance, dairy and soy allergies. At least the symptoms stopped when I abstained from those 3 food groups.

BURDEE

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I was diagnosed with IBS years ago and given anti-spasmodics and anti-anxiety meds to cover up the symptoms. In 1999, I was diagnosed with ulcerative colitis, then they thought it might be Crohn's, then they went back to ulcerative colitis. No one tested me for celiac disease, in spite of my requests. Now, I'm having symptoms that are atypical for UC and finally got my GI to run a full celiac blood panel. I have a feeling the results will be inconclusive since I've been eating mostly gluten free for a long time now. So, I consider myself to be misdiagnosed and I still don't know anything for sure but I do respond well to a gluten and lactose-free diet... in fact, avoiding all grains and starcy carbs seems to help me.

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I was diagnosed with Colitis and then IBS and told to eat a "low residue" diet. Lots of cream of wheat, white bread, etc. Then I was told to eat a high fiber diet with lots of whole wheat and wheat bran etc.. I finally just tried to cope by taking huge quantities of Tums and digestive enzymes. Somewhere in there I got my tonsils taken out after a year of chronic tonsillitis. Overuse of antibiotics during that year greatly contributed to me getting sicker and sicker.

About 10 years after those diagnoses I was diagnosed with Psoriatic Arthritis and was told that I should go on anti-depressants. I was also so fatigued that I couldn't function. I was also told that it was because I had 3 small children and I should expect to be that tired. Instead I went to a naturopath, had an ELISA panel done, eliminated wheat/gluten, dairy, soy and eggs and recovered completely. The only other problems I've had were when I tried to introduce Spelt with disastrous results. Didn't take too long to figure out what the problem was and I've been gluten-free ever since.

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First it was just stress, then it was my gallbladder but after the test for gallbladder function was fine, then it was my appendix which was also fine neither were removed thank God, then it was parasistes and that was negative then I had an upper and lower GI with nothing finally I had a full CT scan and it found nothing related to my stomach issues but did find ovarian cysts which I am very glad of because my life is soooo much better with out those and finally my mom suggested an allergy and it turned on a light bulb for the doc and he ran a blood test and later an endoscopy and bingo bango Celiac's. I was very lucky to only have suffered with severe symptoms from May to Dec. my doctor stayed on top of everything trying to figure it out, I'm so sad I am moving to leave him behind, he was so good to me, I've gone to church with him since I was 3 and he was my doc since I was 12 so my new doc will have some big and good shoes to fill

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As a child, my mother was told I was a hypochondriach and that she should ignore my complaints. She did not ignore them, but the doctors would not help. As a teen I suffered severe anemia. The pills they gave me made me sick and gave me hives. I was diagnosed as manic depressive and given antidepressants that made the depression WORSE! I could not keep up with school work, I could not remember what I had read that same night! Counselors told my parents I was just disinterested. I had numerous bladder infections and was given tons of antibiotics. I did finally graduate, but only with minimal class requirements and the love and support of my mother. While I was pregnant with my first child I got appendacitis (sp). I became super thin, I lost my second child due to "poor nutrition" luckily did not know I was pregnant at the time so it didn't hurt as much as it could have. After I gave birth to my second healthy child I suffered from "normal" post partum depression as well as migraines, and multiple gi problems that they gave me various antacids for. Both knees had completely given out due to "hyperlax muscles" as well as my back. I was looking at double knee replacement surgery and was not even 30 yet! I mysteriously gained 40lbs in 2 months, (body storing the gluten as fat most of the weight was in the stomache area). I was told this was normal because my activity level was low due to my knees. Finally my body gave up and I had a severe allergic reaction to "nothing" that almost killed me. I was at the time on multiple pain meds and vitamin supplements. None of those individually was I allergic to. But was suggested maybe some of them together. My allergist is who finally tested me for Celiacs due to my allergy to all grass on the planet except kentucky blue! One year of gluten free and I can walk without a walker and without a cane! No surgery necessary. My back still hurts occasionally, but I am in PT strengthening my newly developing muscles!

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Submariner wife-

I just love your dog picture...is it a border collie? Do tell...

~Laura

P.S. That's quite a history. I'm glad you're feeling better.

As a child, my mother was told I was a hypochondriach and that she should ignore my complaints. She did not ignore them, but the doctors would not help. As a teen I suffered severe anemia. The pills they gave me made me sick and gave me hives. I was diagnosed as manic depressive and given antidepressants that made the depression WORSE! I could not keep up with school work, I could not remember what I had read that same night! Counselors told my parents I was just disinterested. I had numerous bladder infections and was given tons of antibiotics. I did finally graduate, but only with minimal class requirements and the love and support of my mother. While I was pregnant with my first child I got appendacitis (sp). I became super thin, I lost my second child due to "poor nutrition" luckily did not know I was pregnant at the time so it didn't hurt as much as it could have. After I gave birth to my second healthy child I suffered from "normal" post partum depression as well as migraines, and multiple gi problems that they gave me various antacids for. Both knees had completely given out due to "hyperlax muscles" as well as my back. I was looking at double knee replacement surgery and was not even 30 yet! I mysteriously gained 40lbs in 2 months, (body storing the gluten as fat most of the weight was in the stomache area). I was told this was normal because my activity level was low due to my knees. Finally my body gave up and I had a severe allergic reaction to "nothing" that almost killed me. I was at the time on multiple pain meds and vitamin supplements. None of those individually was I allergic to. But was suggested maybe some of them together. My allergist is who finally tested me for Celiacs due to my allergy to all grass on the planet except kentucky blue! One year of gluten free and I can walk without a walker and without a cane! No surgery necessary. My back still hurts occasionally, but I am in PT strengthening my newly developing muscles!

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She is an English Springer Spaniel, but she is bred for fielding not show that is why she has the short hair and is less bulky. She is my little companion throughout the day. A great dog! And Thank You, it is great to be feeling better.

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I also saw you just moved to Bremerton. I'm outside Seattle, and my sister lives in Keyport right by the Base on the water.

~Laura

She is an English Springer Spaniel, but she is bred for fielding not show that is why she has the short hair and is less bulky. She is my little companion throughout the day. A great dog! And Thank You, it is great to be feeling better.

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Acid reflux - and the PA (yep, didn't even get to see the doc) kept telling me it was impossible that all the stronger and stronger antacids she was prescribing weren't working.

My imagination - I actually sat outside in the hallway while my doctor and her boss talked about how I might be making all this up.

Then there were a bunch of non-diagnoses - basically they do a lot of tests that prove your symptoms-- so I got sent away once told I was hypoglycemic and the next time that I had Raynaud's phenomenon (yeah, like I need someone to tell me that my hands are cold and my fingernails are blue).

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