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jawojtylak

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I have been battling my health for awhile.....I am overweight---obese, 32 yr old female that has been battling fertility issues for about 10 years.....Undergoing treatment for 9 months now. I have always had digestive issues especially if I ate whole grain products---pain, gas, bowel movements, heartburn etc... Last october i started the south beach diet and my mensteral cylces were more regular then ever before. Then in Jan I developed a severe headache, numbness in my right side and altered mental statis. I went the the Er and was told it was meningitis although all test came back negative. I resumed eating a regular diet with carbs and whole grains at this point. I have still had occasional headaches, skin rash, oily watery stool with urgency, erratic mensteral cycles, depression (suffered for 8 years) always hungry, vitamin D deficiency that even on meds can not raise, i still have numbness and tingling in my arms and legs and for about a month I have had a severe pain in my left abdomen under my ribs. Just had a CT scan that showed nothing. The doctor now seems to think that it is a mental issue but I know that I am not feeling myself--always tired and in a brain fog and can not take it anymore. I think that it might be celiacs my current dr will not test it so I am trying to go gluten free.....is that a smart move? How long before I might feel better? Shoudl I be concerned about the bruising and vitamin d deficiency? My dr says not to worry about the vit. D but I think it is essential. Any thoughts or advice would be greatly appreciated!!

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I am new here also, but advanced members have written that a gluten free trial should be three months. Good luck to you!

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I don't know how it works where you live, but my understanding is that a DR cannot deny a request for a simple blood test. Regardless of whether or not s/he agrees with you, your DR should run the blood test to, at the very least, give you peace of mind. Your symptoms could be celiac disease (or could be other things). Are you able to find a new DR or demand the test?

You can go gluten-free and see if you feel better after a few months (I've read it takes 3-6 months to see vast improvement, depending on how much damage has already been done), but a gluten-free diet is very high maintenance and some people need to be 100% sure they have celiac disease before starting it. You don't want to miss underlying issues that may be causing your symptoms. Others are fine with embarking on the gluten-free diet and only care about feeling better and aren't concerned about a Dx (diagnosis). If you go gluten-free before getting tests done then the testing will not be accurate. Testing usually involves bloodwork. If the bloodwork indicates celiac disease, then an endoscopy (a scope down your throat and into your small bowel) would likely be done to confirm. It's all up to you and what you are comfortable with :)

Personally, I would demand the DR at least perform the blood test and preferably a referral to a gastroenterologist.

Good luck whatever you decide,

Jillian

I have been battling my health for awhile.....I am overweight---obese, 32 yr old female that has been battling fertility issues for about 10 years.....Undergoing treatment for 9 months now. I have always had digestive issues especially if I ate whole grain products---pain, gas, bowel movements, heartburn etc... Last october i started the south beach diet and my mensteral cylces were more regular then ever before. Then in Jan I developed a severe headache, numbness in my right side and altered mental statis. I went the the Er and was told it was meningitis although all test came back negative. I resumed eating a regular diet with carbs and whole grains at this point. I have still had occasional headaches, skin rash, oily watery stool with urgency, erratic mensteral cycles, depression (suffered for 8 years) always hungry, vitamin D deficiency that even on meds can not raise, i still have numbness and tingling in my arms and legs and for about a month I have had a severe pain in my left abdomen under my ribs. Just had a CT scan that showed nothing. The doctor now seems to think that it is a mental issue but I know that I am not feeling myself--always tired and in a brain fog and can not take it anymore. I think that it might be celiacs my current dr will not test it so I am trying to go gluten free.....is that a smart move? How long before I might feel better? Shoudl I be concerned about the bruising and vitamin d deficiency? My dr says not to worry about the vit. D but I think it is essential. Any thoughts or advice would be greatly appreciated!!

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I have been battling my health for awhile.....I am overweight---obese, 32 yr old female that has been battling fertility issues for about 10 years.....Undergoing treatment for 9 months now. I have always had digestive issues especially if I ate whole grain products---pain, gas, bowel movements, heartburn etc... Last october i started the south beach diet and my mensteral cylces were more regular then ever before. Then in Jan I developed a severe headache, numbness in my right side and altered mental statis. I went the the Er and was told it was meningitis although all test came back negative. I resumed eating a regular diet with carbs and whole grains at this point. I have still had occasional headaches, skin rash, oily watery stool with urgency, erratic mensteral cycles, depression (suffered for 8 years) always hungry, vitamin D deficiency that even on meds can not raise, i still have numbness and tingling in my arms and legs and for about a month I have had a severe pain in my left abdomen under my ribs. Just had a CT scan that showed nothing. The doctor now seems to think that it is a mental issue but I know that I am not feeling myself--always tired and in a brain fog and can not take it anymore. I think that it might be celiacs my current dr will not test it so I am trying to go gluten free.....is that a smart move? How long before I might feel better? Shoudl I be concerned about the bruising and vitamin d deficiency? My dr says not to worry about the vit. D but I think it is essential. Any thoughts or advice would be greatly appreciated!!

You can either go to a different doctor, in which case you would need to keep eating gluten until all testing (blood test and endoscopy) is completed, or you can just go gluten-free and see if it works for you. Your symptoms are certainly consistent with celiac disease. Vitamin and mineral deficiencies are par for the course; it's primarily considered a malabsorption disorder: http://www.merck.com/mmhe/sec09/ch125/ch125c.html As to your left-side abdominal pain, this person suggests diverticulitis: http://www.itzarion.com/pain-symptoms-chart.html See if any of this stuff sounds familiar: http://www.mayoclinic.com/health/diverticulitis/DS00070

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I personally wouldn't stay with a dr who felt a vitamin D defiency wasn't important. It is very important and key to your wellbeing. Also your dr should run any bloodwork you ask for and are willing to pay your part of. My dr was sceptical also but would not deny a test.

As has been said, you can just go gluten-free if you want. You can't have accurate testing while you are gluten-free so decide if that's important to you or not. It wasn't to me, I just wanted to feel better. I do know that many people are reassured if a dr tells them they are dx'd. You already know the answer that your body has told when you went off gluten before, you said your cycles were regular on South Beach. So go from there, either start the gluten-free diet right away or keep eating gluten and find a dr who can properly listen to your concerns and test you.

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      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
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      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
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    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
    It sounds like you were not given the full celiac panel. The full celiac panel includes: TTG IGA
    TTG IGG
    DGP IGA
    DGP IGG
    EMA
    IGA You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.    
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