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Confused...hurting...
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Hello everyone,

I am new here and have not had official gluten testing done because I am unable to see a GI until 2/4. My symptoms all seemed to start (or get progressively worse) about a month ago. The symptoms include abdominal pain which was located right under the rib cage mainly on the right side which would occasionally also occur on the left side. Diarrhea has been common and I haven't had a "normal" bowel movement in forever. I have also been experiencing chest pains which feel like really bad heartburn. I have been in the ER twice because of these pains where they have done a EKG, CT scan, ultrasound and different blood work. Everything has seemed to come back normal minus high white blood cell (13) and slightly elevated blood pressure. My family seems to have a trend of gluten intolerance and a cousin who is confirmed celiac. I have tried since Sunday to go gluten free and see if it helps with my issues. The first couple days I felt better, only using the restroom once per day which made me very happy and excited, thinking I may have a better idea of what's going on and stop some of the anxiety issues that have accompanied this whole process. Last night I started to develop a pain in my lower left abdomen, which I had not felt before, and today my bowel movements have gone crazy again starting off with what seemed to be darker than normal in the morning and diarrhea since then. I'm so confused as to what is going on and would just like to know of others have experienced things like this or if it sounds more like I am suffering from a different illness :(

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You shouldn't be trying to go gluten free until all celiac related testing is done. That will mess with the results by causing a false negative. Your regular GP can start the process by doing a complete celiac panel. It is a good idea to have vitamin and mineral levels also checked at the same time. That is a good place to start and your GI appointment is only a couple weeks away. That you had such a good initial result with you short time gluten free is a good sign that you need the diet. Since there are many ways to be cross contaminated it is possible that caused the 'bad' day as we often have ups and downs when healing and learning the ins and outs of the diet. So stay on gluten for now and call your GP this morning so you can pick up a lab slip and the GI can have the results in hand on the day of your appointment.

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I agree with Ravenwood, see your GP and get tested right away. The blood tests are a quick and easy thing. The most common celiac tests are:

TTG IgA and IgG

EMA Iga

total serum IgA

DGP IgA and IgG

The first two tests are the most common. The third test is not actually a celiac test but it checks whether you have enough IgA to register a positve Ttg IgA or EMA IgA test if you are a celiac. Keep eating gluten until you are tested

Be aware that approximately a quarter of all celiacs seem to have negative blood tests and are diagnosed by the biopsy.

If all the testing comes up negative, try the gluten-free diet for 6 months and see how you feel; it sounds like you were having good results with it already. :)

Best wishes.

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Upper right area of the abdomen is where the gallbladder is located. Have you had it checked? Ask for a HIDA scan at your appointment to make sure its working right. I passed with flying colors on the bloodtests that were used to check it but when i got the HIDA it showed that it was only working at 5%.

Just a thought :)

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Ravenwood, you mention staying on gluten for blood work, which I did and still got a negative. Surprise surprise. That was three and a half months ago. After the test I went gluten free, but still make mistakes and it seems to be getting worse. Saw my doc last week, she is sending me for a gastroscope and told me I'd have to be on gluten for 2-3 weeks before the scope. I can see why she would want me to, but if I'm having symptoms while doing my best (still learning) at being gluten free I keep wondering if that should be enough for the test. When it comes right down to it I'm scared of being in that much pain for that long, and the accompanying depression. I feel like it can't be good to do to my body/mind.

Any opinions would be welcome. For the record, I definitely plan on asking my doc these questions as well now that I've had time to let the implications of her instructions sink in. Don't have an appt date for the scope yet.

Thanks for reading.

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Diagnosis of celiac disease can be difficult and even having a diagnosis and going gluten free may not solve all of your health problems. In addition to the tests your doctor and others here have recommended, I suggest you meet with an allergist and have a complete allergen panel done (food and environmental). Most people with celiac or other forms of gluten intolerance / sensitivity, will have other food allergies / sensitivities - corn and dairy (lactose and / or casein) are the most common. Until you eliminate all allergens / contaminants from your diet and environment, you will not start feeling better and will continue to be frustrated with your health situation. Trust me - I am speaking from experience.

It is no fun learning that you have to avoid foods that you enjoy, but it is also no fun to suffer from mystery ailments all the time.

Hope you feel better soon.

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my whole family just did the stool testing at EnteroLab. we got tested for gluten antibodies, tissue damage, nutrient malabsorption, as well as multiple food sensitivities. VERY sensitive tests!!!

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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