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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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    • cristiana
      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy.   Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely,    In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D.  Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example,  too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana  
    • tiffanygosci
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    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
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