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Confused...hurting...
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7 posts in this topic

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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    • I thought I would update you all.  I started to eat gluten shortly after this post.  I was miserable by the time I had my EGD.  The doctor gave a diagnosis after the EGD was completed, duodenitis, gastritis and hiatal hernia.  I had abnormal mucosa of the whole stomach and severe inflammation.  The biopsy results came back today, they stated early stages celiac disease.  I wonder what it would've shown if I wasn't on a gluten free diet for two years?  My doctor said he still wants me to come in for a talk, he doesn't really know if he should call it celiac disease since it's early stages....  WTH!  I've really got to find a doctor that specializes in Celiac Disease...    
    • thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
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