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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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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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