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Misdiagnosed With Celiac?

amberlink09

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amberlink09 Apprentice
amberlink09
Posted

Hi Everyone, 

 

I'm beginning to wonder if it is possible I have been misdignosed with Celiac. I was diagnosed in August 2009, so 4.5 years ago, and have been gluten free ever since plus Paleo the last two years. I've been working with a natural medicine type doctor but he sent me back to the Gastroenterologist yesterday because my Ferritin is 0 along with low B12 and D and high C-reactive protein which indicates inflammation. Also, I supplement Iron, B12, and D, and have been supplementing a higher amount of iron since my tests came back a few months ago. I also suffer from alternating D and C (they alternate every few months or so), bloating, bad abdominal pain, and gas. 

 

I have only continued to get sicker since my Celiac diagnosis. I have been told I just have IBS on top of Celiac, but my GI told me yesterday that IBS wouldn't cause the malabsorption we are seeing. Along with the IBS I also have a very weak immune system (constant colds etc. plus a low natural killer cell count), joint pain, fatigue, and numbness/tingling in my hands and legs. Also, I'm only 22.

 

Discussing my original Celiac results with my GI yesterday, the only thing elevated on my bloodwork was IgG, which she said isn't very specific to only Celiac, and my endoscopy results showed inflammation and lesions, but the villi were perfectly fine. My last endoscopy in August 2012 showed doudenitis, gastritis, and inflammation in the small bowel, but all were biopsied and found to be fine. I also had a colonoscopy and everything was found to be fine.

 

Based on this, my doctor thinks that I may have never had Celiac, and actually have Chron's that they somehow haven't caught yet, so I am going to do a pillcam endoscopy at the end of the month to check for it. I am also going to consult with a GI who seems to specialize in Celiac to get his opinion. It is crazy to think I may not actually have it!

 

Has anyone else experienced this? I feel like I've tried every kind of medicine, every kind of diet, and seen every kind of specialist, yet no one knows what the problem is. Sorry for the long post, but any help would be appreciated!

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C-Girl Contributor
C-Girl
Posted

Hi Everyone, 

 

I'm beginning to wonder if it is possible I have been misdignosed with Celiac. I was diagnosed in August 2009, so 4.5 years ago, and have been gluten free ever since plus Paleo the last two years. I've been working with a natural medicine type doctor but he sent me back to the Gastroenterologist yesterday because my Ferritin is 0 along with low B12 and D and high C-reactive protein which indicates inflammation. Also, I supplement Iron, B12, and D, and have been supplementing a higher amount of iron since my tests came back a few months ago. I also suffer from alternating D and C (they alternate every few months or so), bloating, bad abdominal pain, and gas. 

 

I have only continued to get sicker since my Celiac diagnosis. I have been told I just have IBS on top of Celiac, but my GI told me yesterday that IBS wouldn't cause the malabsorption we are seeing. Along with the IBS I also have a very weak immune system (constant colds etc. plus a low natural killer cell count), joint pain, fatigue, and numbness/tingling in my hands and legs. Also, I'm only 22.

 

Discussing my original Celiac results with my GI yesterday, the only thing elevated on my bloodwork was IgG, which she said isn't very specific to only Celiac, and my endoscopy results showed inflammation and lesions, but the villi were perfectly fine. My last endoscopy in August 2012 showed doudenitis, gastritis, and inflammation in the small bowel, but all were biopsied and found to be fine. I also had a colonoscopy and everything was found to be fine.

 

Based on this, my doctor thinks that I may have never had Celiac, and actually have Chron's that they somehow haven't caught yet, so I am going to do a pillcam endoscopy at the end of the month to check for it. I am also going to consult with a GI who seems to specialize in Celiac to get his opinion. It is crazy to think I may not actually have it!

 

Has anyone else experienced this? I feel like I've tried every kind of medicine, every kind of diet, and seen every kind of specialist, yet no one knows what the problem is. Sorry for the long post, but any help would be appreciated!

That sounds truly awful! I can't imagine a ferritin of 0. I was really messed up when mine got to 10.

 

It sounds like the original diagnosis was wrong indeed, at least via the blood test. Did they do a biopsy back then?

 

I really hope you went to a different doctor than the first one. Hopefully a doctor who is better! I've found out through numerous personal experiences that not all doctors are actually smart or even good at diagnosing anything more than the common cold. Ten years ago, I went through three doctors before finding one that took one look at me and said I had shingles, and just in the nick of time got me some antivirals that stopped it.

 

Luckily for me, it only took me one GI to diagnose my celiac, but I had a second one look at the results and he agreed. The biopsy confirmed total villous atrophy.

 

Now, of course, a gluten free diet would heal the villi had they been damaged in you previously, but that would reverse all the malabsorption. It sounds like you've got something else going on, and you really need to get it addressed asap if you have such terrible ferritin, B12 and D.

 

On a possibly related note, I have been doing a lot of research into microbiome, or the bacteria in the intestinal tract. They play a very important role in digestion, health and lots of other things - even emotional states. Have you been taking any probiotics? It could be that you have C. difficile overgrowth or something like that. That could be tripped by using the wrong kind of antibiotics (my hubby got some nasty ones as a preventative after shoulder surgery and they made him really sick, but priobiotics helped him get better over a couple months).

 

I honestly hope you get it all figured out, but I'm really happy for you that you likely don't have celiac! Have a big piece of cake for me :)

IrishHeart Veteran
IrishHeart
Posted

 

 

Has anyone else experienced this?

Not sure anyone reading on this forum has, hon...because they would no longer be reading a celiac forum.

 

Surely, something is not right here.

 

This does not sound like a definitive celiac DX to me (but I am not a doctor):

 

 the only thing elevated on my bloodwork was IgG, which she said isn't very specific to only Celiac, and my endoscopy results showed inflammation and lesions, but the villi were perfectly fine

 

 

Please, get yourself to a GOOD GI doctor pronto. A pillcam test is not going to DX Crohn's. You need a white blood cell count, a barium Xray and colonoscopy, other blood work, etc.

 

Open Original Shared Link

 

for what it's worth, people with Crohn's and IBD do well on a totally grain free diet (not just gluten-free)

and this woman is living proof of good health achieved when she adopted this diet.

 

Open Original Shared Link

amberlink09 Apprentice
amberlink09
Posted
  • Author

Thank you for the responses! I am so shocked that my doctors never told me any of this until yesterday, 4 and a half years of being gluten free and I might not even have Celiac?! That is impossible to imagine!

A PCP did the original blood test, and a seemingly reputable Celiac doctor here did the endoscopy that diagnosed me, then I switched to another GI who pretty much told me I'm a hopeless case a few years ago. I have an appointment with another GI in a few weeks for another opinion, if it is Chron's I don't want to waste time and money on a pill cam where I can't get biopsies.

Also, coffngirl, I am on digestive enzymes and probiotics but they don't seem to help either :/ I swear I've tried everything with no result, after my last endoscopy/colonoscopy two years ago though I pretty much gave up on ever feeling better, here is to hoping that a good GI can figure it out, even if it means something as awful as Chron's.

GFinDC Veteran
GFinDC
Posted

Hi Amber,

 

It makes sense to look back at your test results from the original celiac disease diagnosis.  But any tests you are doing now for celiac disease will automatically be negative since you have been gluten-free for a while.  The only way to get good celiac testing for now would be for you to do a gluten challenge for some period of time.  The whole point of the gluten-free diet is to eliminate the blood antibodies and villi damage, so it could be said it worked in your case!

 

But, that doesn't mean you don't have Crohn's or some other condition.  It is possible to have more than one GI condition at once.  My brother had both Crohns and celiac disease.

 

If you read up on a Crohn's forum you will find that some Crohnies do well on a gluten-free diet, and others don't see any improvement.  It's a variable thing for them.

Lizzo Newbie
Lizzo
Posted

There's actually a chance you have both:

 

Open Original Shared Link

 

"Some research has shown that people with one condition are more prone to the other. One study, for example, found that more than 18.5% of patients with Crohn's disease also have celiac disease."

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