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Confused...hurting...


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6 replies to this topic

#1 Deezel52

 
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Posted 23 January 2013 - 03:20 PM

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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#2 ravenwoodglass

 
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Posted 24 January 2013 - 06:27 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 nvsmom

 
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Posted 27 January 2013 - 10:28 AM

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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#4 shadowicewolf

 
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Posted 27 January 2013 - 12:07 PM

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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#5 Wowza

 
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Posted 28 January 2013 - 07:52 AM

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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#6 Austin GF Family

 
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Posted 28 January 2013 - 01:09 PM

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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#7 kerid

 
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Posted 28 January 2013 - 06:09 PM

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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