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Could It Still Be Celiac Or Gluten Sensitivity?
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Okay, here's my story. Ever since the age of 7 I have been experiencing stomach pain after meals. In the last few years the stomach pains have been going away but I still have many symptoms such as headaches,skin rashes,dizziness and constipation. I went to the doctor for my problems and they told me to go off dairy and tested me for celiac among other things.The next day they called to say all my blood work was fine and that I don't have celiac ( I find this strange because doesn't the blood work take more than 1 day) Anyways so going off dairy helped a bit but I still have many symptoms. The reason I'm still thinking gluten is the culprit is because my mom also has many symptoms such as psoriasis,keratosis Polaris, fatigue and sleep apnea. I still live with my mom and she thinks that gluten sensitivity is a myth and won't let me go off of gluten to see if I have a sensitivity. Anyways so what should I do and is it possible I still have celiac or even a gluten sensitivity?

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Can you get a hold of what tests were done?  Some doctors run the old tests, misinterpret the results, or only run one test when more should be done.  You do have some symptoms that could be attributed to celiac disease or NCGS (non-celiac gluten sensitivity) so it is worth rechecking.

 

If you think it could be NCGS, go gluten-free for a few months and documents your symptoms.  No one needs a doctor's prescription to go gluten-free. Gluten has no nutritional value anyways, and is not heavily eaten in other parts of the world... it is just convenient and tastes good.  ;)

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I do think the test does take more than one day to run and interpret. I was told 4 days is about the shortest. So that is strange. I have heard that many people have the test run several times and sometimes it takes a few times to actually come back positive. I was young (17) when I first started to realize something was wrong, like yourself. I wish I knew about celiac disease then, because I am about to turn 30 and I have been through a lifetime of hurt because of this disease. I was always misunderstood by my parents because of the way I ate and felt all the time. It is certainly difficult. You are very lucky to have the resources to help you determine what tests the doctors should run, i wish i had the resources at a young age because I would have asked the Dr to run the tests sooner and saved myself and my health.

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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
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