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Symptoms, Diagnosis, and education.


Mont82

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Mont82 Newbie

A little over a year ago I started to experience digestive issues. My stomach and Anus would burn, I would have really bad pain in my stomach. I went to the e.r at Jefferson health and they diagnosed me with acid reflux and was prescribed pepcid. The pain continued and gradually got worse until it was excruciating, the pain would be so bad that i would get a hot flash and my whole body would sweat and my whole body felt like it was on fire. I would get tons of gas and an uncomfortable feeling in my lower stomach and anus. I went to a g.i at Temple northeastern hospital and she ran some blood tests, a colonoscopy, and a upper endoscopy. She diagnosed me with celiac because my vitamin d was low along with other counts being low. I have been on a gluten free diet for almost a month. Last night I had a baked potato with cheddar cheese and my stomach felt like someone clamped my intestines with a pair of plyers and twisted them. I felt gas so I tried to pass gas but it still hurt. Every time I would pass a stool my stomach would hurt worst and my anus would burn bad. I need to know if it really is celiacbor something else?


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squirmingitch Veteran

First off welcome to the club you never wanted to be a part of.

Second, you should get copies of the results of your labs -- all of them including the pathology & write up of your colonoscopy & endoscopy. You should always get & keep for your own records, copies of medical records, labs & other tests.

Did she take biopsies during the endoscopy? How many? From what areas? What did the pathology say? How about the blood tests? Was there a celiac panel? Was it the completed panel (6 tests) or a partial & what were the results along with reference ranges? What all vitamins did she test for? Results & reference ranges?

You state that she diagnosed you on being low in Vitamin D & "other counts being low". I'm not trying to harass you or be difficult but when you term it like that, we have not much to go on. I know you're new to this whole thing and I know you're scared & no doubt hurting but you have to give us something to go on when you ask if it's really celiac or something else because for some reason, your GI has dx'd you with celiac -- we need to know that reason & not go on vague info..

Third, you've only been gluten free 1 month. That is NOT enough time to heal & you can easily have ups & downs until your villi heal so last nights baked potato & cheddar may not be the culprit. However, having said that, you may also have a problem right now with digesting (breaking down) the lactose in the cheese because your villi are damaged & the tips of the villi (the 1st to be damaged) are the part that deals with lactose (dairy products).

Fourth, you need to make sure you know exactly how to keep yourself safe & that you are indeed eating gluten free & not getting cross contaminated (cc'd). 

Fifth, for now, take it easy. All fresh or frozen fruits, veggies & meats. Ditch the dairy for now. Cook everything to death -- veggies get cooked to mush -- easier to digest for now. You see?

 

GFinDC Veteran

Hi,

Welcome to the forum! :)

Celiac disease affects the small intestine, not the large intestine.  So pain from the large intestine could be a symptom of something else.  That something else could be an additional condition that you have on top of celiac disease though.

So, yes, getting all your test results is important.  It could be you are making too much acid and or the acid in your gut isn't being neutralised.  The acid in your stomach is neutralized by bile created in the liver and released by the gallbladder into the gut.  People with celiac seem to have gallbladder problems fairly often.  So that might be a good thing to ask about having checked.  They do a test called a HIDA scan to verify the gallbladder is functioning correctly.  Sometimes doctors will remove the gallbladder but that's not a great thing to do.  If the gallbladder is not too damaged it is better to remove the irritant (probably gluten) and let the gallbladder heal itself.  That isn't always feasible but sometimes is.  Your GI doctor can best advise you.

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    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
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    • barb simkin
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