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Just diagnosed, but maybe a misdiagnosis?

CoopCoop

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CoopCoop Newbie
CoopCoop
Posted

I was recently diagnosed with Celiac after having gall bladder removed, taking Omeprazole disnt work. Upper GI as well as colonoscopy was done. Colonoscopy came back normal and upper showed signs of Celiac. Dr. has ordered me to get blood work done specific for Celiac, because even though I am eating gluten free, I am still having symptoms....sever atomic pain, sweating, chills....can last for a short bit, or for hours. Here's the kicker, before the diagnosis, I was eating whole wheat bread, crackers, all sorts of grains, with random symptoms. If it was Celiac, wouldn't I have a reaction every time I ate gluten? I am so confused. 

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Victoria1234 Experienced
Victoria1234
Posted
9 minutes ago, CoopCoop said:

I am still having symptoms....sever atomic pain, sweating, chills....can last for a short bit, or for hours.

May be something different from celiac, might be accidental glutening. How long have you been gluten-free? Many of us had symptoms for weeks, months, some even over a year after we went gluten-free.

10 minutes ago, CoopCoop said:

ordered me to get blood work done specific for Celiac, because even though I am eating gluten free, 

Your blood work will come back negative if you are gluten-free. You need to be eating gluten for the antibodies to show up in your blood- if you are celiac.

 

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Your doctor should have told you not to stop eating gluten until after your blood work. You need to go back on it for a bit if you have been gluten free for more than a week or two you should do a couple months back on gluten before having the blood drawn.

It isn't unusual for celiac GI issues to not be a constant thing. At least in earlier stages. For many years I would get violent D only a couple times a week before the D became a daily and nightly occurance.

Symptoms can hang on for a bit even after we are gluten free.  Chances are good also that you haven't been as gluten free as you think you may be. Do read the Newbie 101 thread and ask any questions you need to ask while you wait out the time until blood work can be done.

cyclinglady Grand Master
cyclinglady
Posted

When I was diagnosed, I had only anemia.  That is it.  Later I found that I had osteoporosis as a result of untreated celiac disease.  There are over 200 symptoms attributed to celiac disease.  You may have many or NONE at all (called silent).  

After going gluten free within months my anemia resolved.  However, when exposed to gluten I can get the classic celiac disease symptoms or even new issues like chronic hives.  It takes me at least six months to recover fully from a gluten hit. 

Not every celiac takes a hit like me.  We are all different and react differently.  So, it is not just about going gluten free.  It is about fine tuning the gluten-free diet and addressing food intolerances that often accompany celiac disease thanks to a very damaged gut.   Celiac disease is definitely like a chameleon,  symptoms can wax and wane.  

That reflux?  Take a med is just a bandaid approach.  There is a  reason for your reflux.  If celiac related, it should go easy soon.  Please research on how to get off your current prescription.  There can be rebounding.

The good news is that you can get well just by diet.  How lucky is that?  

 

Beverage Proficient
Beverage
Posted

I went to a naturopath because of gradually decreasing kidney function and was diagnosed with Celiac's.  For me, when I get accidentally glutened, I don't get symptoms until I've had that gluten for awhile, like several weeks. Then, I start feeling like I've got a bad flu coming on. Everybody is different.  It's not like an allergy where symptoms are a direct result of exposure.

 

Victoria1234 Experienced
Victoria1234
Posted
2 hours ago, Beverage said:

I went to a naturopath because of gradually decreasing kidney function and was diagnosed with Celiac's.  For me, when I get accidentally glutened, I don't get symptoms until I've had that gluten for awhile, like several weeks. Then, I start feeling like I've got a bad flu coming on. Everybody is different.  It's not like an allergy where symptoms are a direct result of exposure.

 

If you get accidentally glutened, how do you keep doing it for several weeks? Or do you mean you get glutened once and several weeks later you react? 

Beverage Proficient
Beverage
Posted

I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms.  As we know, no symptoms does not mean no damage being done.   I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on.  I never did get the intestinal symptoms others get. 

This for me is the hardest part of having Celiac's, figuring out what did it.  Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse.   It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care. 

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Posterboy Mentor
Posterboy
Posted
On 9/22/2017 at 12:59 PM, CoopCoop said:

I was recently diagnosed with Celiac after having gall bladder removed, taking Omeprazole disnt work. Upper GI as well as colonoscopy was done. Colonoscopy came back normal and upper showed signs of Celiac. Dr. has ordered me to get blood work done specific for Celiac, because even though I am eating gluten free, I am still having symptoms....sever atomic pain, sweating, chills....can last for a short bit, or for hours. Here's the kicker, before the diagnosis, I was eating whole wheat bread, crackers, all sorts of grains, with random symptoms. If it was Celiac, wouldn't I have a reaction every time I ate gluten? I am so confused. 

Coopcoop,

Have you considered your meds?

They are other things that can cause Villi damage.

See these two links that talk about how we forget some medicine's as a cause of Villi atrophy.

I recently had a bad reaction to Losartan a BP medicine.....

Follow the links in both these threads and I think you will find you might need to examine your meds to rule out any possible side affects.

https://www.celiac.com/forums/topic/119462-what-else-can-cause-villi-blunting-has-any-body-had-expereince-with-losartan-and-villi-blunting/

https://www.celiac.com/forums/topic/119463-meds/?tab=comments#comment-982388

NSAIDs can also Villi blunting if used extensively for pain management.

Open Original Shared Link

I hope this is helpful.

posterboy,

 

ironictruth Proficient
ironictruth
Posted
On 9/22/2017 at 1:59 PM, CoopCoop said:

I was recently diagnosed with Celiac after having gall bladder removed, taking Omeprazole disnt work. Upper GI as well as colonoscopy was done. Colonoscopy came back normal and upper showed signs of Celiac. Dr. has ordered me to get blood work done specific for Celiac, because even though I am eating gluten free, I am still having symptoms....sever atomic pain, sweating, chills....can last for a short bit, or for hours. Here's the kicker, before the diagnosis, I was eating whole wheat bread, crackers, all sorts of grains, with random symptoms. If it was Celiac, wouldn't I have a reaction every time I ate gluten? I am so confused. 

My doc is a celiac specialist and I was told that you do not always react right away and that the symptoms ebb and flow if you wil

Your doc should have kept you on gluten for blood work. How long have you been off?

The inflammatory process releases cytokines which can cause pain anywhere. Did they do a stomach biopsy too? They never did for me but a pill came picked up healing gastropathy which I aggravated recently. It can take a long time to heal your gut and you may have some funky symptoms during that time. 

Feeneyja Collaborator
Feeneyja
Posted

Lots of folks with gluten intolerance (celiac or NCGS) also have a big problem with milk.  Sometimes the symptoms are just as bad as with gluten. You might want to consider removing dairy until you heal. 

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Feeneyja said:

Lots of folks with gluten intolerance (celiac or NCGS) also have a big problem with milk.  Sometimes the symptoms are just as bad as with gluten. You might want to consider removing dairy until you heal. 

True, and if you are lucky, you will regain your ability to consume all dairy products provided that you are not genetically predisposed to being lactose intolerant (or partially).    A big chunk of the population is lactose intolerant.

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