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Misdiagnosed And Had Celiac All Along? Hi!
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Hello everyone! I am a new member, but have been lurking for a few days. I received my diagnosis about a week ago between Christmas and New Years. I am both relieved and anxious about the diagnosis. Happy to know what is making me sick, but it is a lot to take in! SO MANY QUESTIONS!!! Well, seems like I found the right place to ask those questions. ^_^

To skip my personal story about being repetitively misdiagnosed before receiving a proper diagnosis, scroll to the end of my story for the questions. I just wanted to share my experience.

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So, here is where I want to begin. Here is my story, questions attached:

In my experience, I have been sick since I was a small child.

I became anorexic at age 8, not for vanity, but because I simply felt better when I didn't eat. Then I became more sick and was diagnosed with hypothyroid disease.

I started eating 'normal' again while taking synthetic thyroid hormones and then my weight ballooned into my early teens. Then my same doctor that diagnosed me with hypothyroid disease took me off the synthetic thyroid medications when blood work returned with results showing that I no longer had hypothyroid disease.... weeiiiird.

Then it happened again off and on, not two, not three, but four times throughout highschool. Thyroid problems came and went. I then developed cystic nodules all over my body and was put through more than one round of accutane.

The cysts would disappear after 8 or so months on accutane, I would come off the accutane, be clear for a week or two, then... BLAM! Covered in cysts again!

Little did I know, hypothyroidism and cysts were symptoms... it gets a little more weird.

So, into my college years, I had a body full of scars, cysts, thyroid problems, SEVERE fatigue, inability to focus, and sudden complications with my kidneys. It soon became normal to be in pain, not remember anything/fuzzy memory, and have blood in my urine. (my grades dropped at this time - straight A's to D's and a few F's :( Parents were angry and didn't listen when I gave them my reasoning.. I felt like shitaki mushroom).

Doctors put me on kidney medications and then accutane.

I became anorexic again. The symptoms cleared and I felt good again... for a few months (I wasn't eating after all). I mean, my skin was clear... not a single cyst OR pimple! I could breathe better AND I had energy. I was even making straight A's again!!!

Then it occured to me that I may have food allergies.

So I saw an allergist and was then diagnosed with food allergies: dairy, wheat, ginger, and sweet potato. (And THEN my mom decided to tell me that she was hospitalized while pregnant with me for consuming dairy!) angry face, fist shake.

I began eating well. The pain would sometimes happen and the cysts returned... but they no longer covered my entire body. I would have maybe eight cysts on my back and 5 or 6 on my face at a time. I wasn't complaining... it was the best I had felt in years. Even if I did have a few off days! My parents still believe my drop in grades having nother to do with my health... :( I'm serious... I study hard and never party...blah blah blah. I'll save THAT (parental reaction and grades) for another topic.

Then I had a few episodes... so severe... I ended up in the ER several times this past semester. (grades: managed to do okay, but nothing spectacular). The doctors told me that I not only had debri in my kidneys, but I may be developing more severe problems as well.... possibly might develop kidney disease. I was placed at high risk. :( :( :(

I got to where I started drinking a gallon of water a day, no tea, no soda, no coffee, etc.

I felt better as a result but still had severe pain. I would have a hard time walking between classes and even doubled over on the sidewalk a few times because it felt as though someone had shoved a few knives into my gut and they were twisting them in many different directions at once.

I saw the school doctor and disability office and they e-mailed my teachers as a result. I was allowed a few extra minutes to get to my classes. Which, believe me, I needed! There is a strict attendence policy at my university where 3 tardies/lates = 1 absence and 3 absences = 1 drop in a letter grade. Sometimes I would be on time, sometimes 5 minutes late, every time in pain. I just couldn't live like this anymore!

So I went to the same doctor I had been seeing as a child over the break. She told me that she was going to have two separate blood tests done and not to eat for 24 hours before my appointment.

I followed orders and came in. She drew blood, labeled it, and then handed me some rye bread to eat. An hour later, she drew more blood.

Two weeks later, I came in to hear that I had low amounts of IgA and IgG antibodies in the first blood test, but in the second blood test... the amounts were HIGH.

So, after a few more tests, the results are in. I have celiac disease. I am so RELIEVED. After a LIFETIME of health complications, I have an answer. I know I have only been gluten free for a few days (I am avoiding my allergens too), but I am looking forward to becoming healthy and having energy again!

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Here is my question for you guys!

Before being diagnosed with celiac disease, were you diagnosed and treated for other things that were actually related to/tied to celiac disease?

If so, what was your misdiagnosis?

How did you feel to finally know that you had celiac disease?

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Hello, and welcome to the boards.

I was not doctor diagnosed; I had to figure it out for myself. I came to this conclusion after being diagnosed with psoriatic arthritis. Since I knew of another person with a rheumatoid autoimmune disease who ate gluten free (ankylosing spondylitis), I decided to try gluten free myself, not dreaming that it would solve my gastrointestinal symptoms which had been variously labelled fibromyalgia, IBS, and "all-in-your-head". :)All (including the head :D ) resolved on a gluten free diet. However, my constant chills did not, so I had thyroid testing and remain on levothyroxine to treat my hypothyroidism. I also have stage III kidney disease - how much is attributable to gluten I do not know. It was diagnosed while I was taking diclofenac to treat the arthritis. I had to start taking diuretics in my 30's for edema. Nobody has ever connected all the dots :blink:

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I am so happy you found a root to your health problems!

I had mono when I was 19 years old. After that I suffered from extreme fatigue, bloating, and sensitivities to chemicals. I tried various methods to overcome the struggle. These included diet restrictions, excercise, doctor tests. I tried to cut out gluten once, but I substituted it with rice and peanut butter (Both are problems for me) I became more and more stringent with my diet. I used natural foods, quit sweets, and even ate vegetables!

Inspite of this I nearly died 5 years ago. That was about 25 years after the mono. My blood pressure would plummet when I stood up. After a minute or two, it was still down. My blood pressure was high. I went on supplements that brought my blood pressure to a normal curve. I felt much better, but I would mysteriously feel poorly once in a while, and could not snap out of viruses easily.

I told my chiropractor that every tissue in my body felt irritated. She was thinking some kind of food intolerances were causing it. My chiropractor asked me a couple of times if I was eating gluten. Then I looked in to gluten problems. If I had one that sure would explain alot. I did genetic testing which showed 4/4 gene alleles, two of them celiac. I took my results to an MD in hopes she would debunk the test, but she back them unquestionebly. She was looking at my "5-months-pregnant" bloated tummy.

I believe I am 7 months gluten free now. I have continued making other changes and added further supplements. My fogginess has been missing for atleast a month! I am so glad for the oppertunity to come "Back from nowhere."

I hope that you will get better soon.

Diana

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Yikes, you've had a tough go of it. That's great that you've found the root cause of it and I hope the gluten-free diet goes a long way towards making you feel better.

I

As for your questions:

Before being diagnosed with celiac disease, were you diagnosed and treated for other things that were actually related to/tied to celiac disease?

Yes. I was diagnosed with Thrombocytopenia (ITP) as a young adult about a year after having EBV and pneumonia. I think I developed (Hashimoto's) hypothyroidism a few years after that but it wasn't acknowledged by docs until this summer.

If so, what was your misdiagnosis?

I was never misdiagnosed, rather the celiac and hypothyroidism were just missed. I was the one who figured out both and the doctors just confirmed it. Up until this summer, doctors didn't call the celiac disease or hashi's anything else, I was just told I tended to get stomach aches or told to "come back if it doesn't improve"... problem was that it usually did eventually... and then it would come back again. :rolleyes: I gave up and stopped going to doctors for years and years.

How did you feel to finally know that you had celiac disease?

Really really annoyed with my doctors that they dismissed my symptoms and that I could have been MUCH healthier throughout the prime of my life. I felt quite robbed. Then I settled into the gluten-free diet and was relieved that it was so easy to treat this disease, and I was thankful that I had control over my treatment so I didn't have to rely on (idiot incompetent) doctors.

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That attendence policy is a lot easier than mine is! Every two absences = a drop of a letter in grade. 5 absences = fail. :lol: We don't have a tardy policy. But when you're sick well, that can be kinda hard :)

I hear ya. My second semester of sophmore year I got really sick, the E.R. kind. I was told nothing was wrong, etc, etc. Uhuh suuuuure <_< Dropping 40lbs in a little over a month? Vomiting and D on a near daily basis? GERD so bad that my throat was damaged? /rant

IBS was my unofficial misdiagnosis.

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Wow, from the title of the post, I thought I could relate, but after reading your story, I'm just really grateful to have not have had it so bad. It sounds as if you've been to hell and back again.

However I'm sure most can relate to many of the same problems when it comes to the medical industry.

I was going to doctors on a fairly regular basis for twenty years for one problem or another and was told there was nothing wrong with me, was prescribed drugs that didn't have any effect aside from their own negative side effects, or the worst, was told that it was all in my head. That last one is particularly frustrating. And I too had gotten to the point that I had given up on the medical industry as a whole.

My actual diagnoses included colloid nodules in my thyroid though no possible causes were ever discussed. My digestive issues were written off as IBS and I was told that probiotics would make it all disappear. They did not. Many doctors suspected crohn's disease but tests ruled that out. But most of the problems I did have were simply ignored simply because they weren't all that disruptive to life. Really bad ear aches, skin rashes, hives and eczema-like problems, minor neuropathies in hands and feet, vision problems that came and went, menstrual irregularities, really bad joint pain, and more, all pretty much dismissed by doctors.

I'd love to blame doctors entirely, angry at their arrogance and egos, dismissing my pain simply because they didn't know the cause. I can only remember one out of dozens, a rheumatologist, who actually tried to figure out the mystery, but most didn't bother.

But in hindsight, I have to remind myself that diet and nutrition are not part of a standard medical degree. And I had done plenty of research about celiac and gluten when I went in search of possible causes for my digestive issues years ago. But the information available back then was pretty much nonexistent compared to what is available today. And I didn't have anywhere near the horror story related above, most likely because I was only getting lots of gluten in my diet when I ate out.

I don't know if I have celiac disease, some degree of allergy, or an intolerance. And I suspect that in the next few years we're going to see the definitions of all of these change as the medical industry catches up and realizes that a multitude of digestive-system problems are all related to gluten, individuals simply responding in different ways.

I finally figured out that I had a problem with gluten when a knee injury kept me from getting to the grocery store and I suddenly had an influx of gluten into my diet when I started eating out instead of cooking for myself. Suddenly having all sorts of odd symptoms arise simply couldn't be just because I was exercising less. And that little light bulb went on in my head and I started researching gluten again.

Apparently I was instinctively avoiding gluten when I cooked for myself, almost never eating bread or pasta at home. I had even stopped eating my favorite canned soup and boxed side-dish mix because I noticed that they caused problems, both of them heavier on wheat pasta than the others in my cupboards.

In hindsight, test results had been showing indications of malnourishment all along, dangerously low cholesterol levels and slight anemia came and went. My hormone imbalances would vary with each yearly test. Add on the unexplained rashes and hives. Coworkers had noticed that I would start sneezing after eating, but only when I bought my lunch or breakfast which included bread. Weight loss despite increased caloric intake was recurrent. And the colloid nodules I have since learned are pretty standard for gluten problems.

I'm still angry and disappointed by most of the doctors I have ever seen. Fortunately, the nurses who are now available at my local pharmacy seem to know just as much if not more, but without the attitude, and can help out with most of the day-to-day medical needs. I still haven't found new doctors that I trust and don't even know what type would actually be able to help most now that my body is recovering. With an illness that is so recently becoming understood, who could possibly know what to watch out for in the future when it comes to past damage done?

And I still haven't gotten past some of the negative feelings of wondering how much different my life could have been had this problem been discovered sooner. I've learned that family members really don't want to hear about it because then they may have to take into consideration the hereditary factor and change their own eating habits. And my mother seems to be the toughest nut to crack, having been so proud that her children didn't have allergies all of these years, and unable to admit a perceived weakness now. She simply doesn't believe that I have a gluten problem at all.

I suppose you have to have gotten to the point where you feel really awful before you can see living gluten free as a positive thing.

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    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
    • So ok, I get the pain/bloating thing, but it still feels so crazy. But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy.  I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender.  I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant).    I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin.  1) when will I stop looking knocked up?  2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 
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