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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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