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First Gi Appt Today


Megan

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Megan Rookie

Going to my GI today...first time

And it's my COUNTRY Docotor from abck home, so I got in within like two days, from what my mom has told her...I do not have Celiacs and I am NOT Gluten free, it could be a million other things!!! Hopefully we figure it out because I don't really care what it is at this point so long as I can feel better soon. Any advice?

WISH ME LUCK!!


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dlp252 Apprentice

Good luck! Take a list of questions and/or symptoms with you, lol. I forgot to mention two very important things to my GI when I saw him that I wished I'd mentioned. I see hime on Monday again for my endoscopy/colonoscopy, so I hope to have time to mention them then.

moonunit Apprentice

Hi! I didn't reply before because I figured I'd be too late for a "good luck" to matter, but good luck anyway!

How did it go?

The only piece of advice I would have maybe suggested is to know before you go what the latest procedures and tests are. My primary care was VERY convincing and adamant that her information was correct and mine was wrong. If I hadn't done my homework I might have believed her.

I'm mostly posting to find out what happened! :)

Megan Rookie

She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

debmidge Rising Star

Oh boy, where have I heard this before? If gluten-free is doing well for you then don't return to old foods.

My husband was misdiagnosed for 27 years with spastic colon, irritable bowel, IBS ....

Good luck and question, question question the doctors if you need to.

schuyler Apprentice

I was also misdiagnosed with many things over the years (spastic colon, IBS, reflux, etc.). I hope that you feel better soon!

Danielle

ravenwoodglass Mentor
She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

I hope your on the gluten free diet now and not waiting for the test results, the tests miss a lot of us. You may not need the meds if the diet works. Some of us get relief from symptoms within days. And releif from symptoms is the true test


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shayesmom Rookie
She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

This is just part of an article by Kenneth Fine, M.D. that truly hit a chord with me. You see, my "symptoms" were NOTHING compared to what most people here have gone through. Just seemingly random incidents of D and chronically being tired or depressed (I blamed it on stress at work). I have never been biopsied nor have I felt the need to see a doctor. I just haven't felt THAT bad as yet. But when my dd showed symptoms and then my aunt was diagnosed via biopsy, I figured, why the heck wait and see if I get the full-blown version??? With my dd being gluten-free, I went gluten-light (because I was too tired to deal with separate meals for everyone). I began having energy and having less of my "random" D incidents. A little over a month ago, I decided that I wasn't going to wait around any more and just try being strictly gluten-free to see if I really had an issue too. Turns out, I DO have a problem with gluten. And I am happy that I went gluten-free without waiting for a doctor's permission to do it. I figure I may have saved myself YEARS of suffering by just listening to what my body was telling me.

Unfortunately, the tests (and some doctors) used to diagnose Celiac are archaic and unreliable. There is a huge amount of subtlety to Celiac where the symptoms are continually being re-defined. And even if Celiacs is relatively "rare"....gluten sensitivity is not. So maybe the small bowel isn't being attacked by the immune system. Instead, maybe it's the pancreas (as in diabetes), or the liver (lupus), myelin sheaths (MS), joints (rheumatoid arthritis), brain (autism, schizophrenia, depression)......ALL are related to gluten sensitivity. And I have seen ALL of them improve with a gluten-free diet at the heart of dietary treatment.

I am not trying to be critical of your decisions for obtaining a formal diagnosis, but rather, I hope that if at any point the tests aren't working out, you are able to say, "enough is enough" and trust in yourself to find solutions that work for YOU. Don't let someone else to tell you how you are feeling when in your heart, you know differently. No one knows what you are feeling and experiencing more than you. And THAT is the most valid point of all.

So here's that excerpt from Dr. Fine.

"I am here to report on a scientific paradigm shift regarding early diagnosis of gluten sensitivity based on about 30 years of medical research by myself and others. My message is that earlier and more inclusive diagnosis of gluten sensitivity than has been allowed by blood tests and intestinal biopsies must be developed to prevent the nutritional and immune consequences of long-standing gluten sensitivity. Imagine going to a cardiologist because your blood pressure is high or you're having chest pain, and the doctor says he is going to do a biopsy of your heart to see what is wrong. If it all looks 'O.K.', you are told you have no problem and no treatment is prescribed because you have not yet had a heart attack showing on the biopsy. You would not think very highly of the doctor utilizing this approach because, after all, isn't it damage to the heart that you would want to prevent? But for the intestine and gluten sensitivity, current practice embraces this fallacious idea that until an intestinal biopsy shows structural damage, no diagnosis or therapeutic intervention is offered. This has to change now because with newly developed diagnostic tests, we can diagnose the problem before the end stage tissue damage has occurred, that is before the villi are gone, with the idea of preventing all the nutritional and immune consequences that go with it."

The article in its entirety can be found at: Open Original Shared Link

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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