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Is It Necessary To Be Tested If Gluten-Free Diet Makes Me Feel Better?

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My neurologist suggested I go gluten-free to see if it helps with my symptoms before I get tested because I have no insurance and the test can be quite costly. I'm twenty eight and I've been miserable for nearly 11 years. It all started when I was seventeen. I started my family at an early age, the pregnancy was miserable!!! I was always sick, no energy, severe anxiety attacks, blood clots, depression, non-stop labor pain, I was always hungry, could never get satisfied and couldn't gain weight ( I was always small before I got preg I was 5'8" 105, when I gave birth I was 120, all belly). Shortly after giving birth (days) I developed a large goiter on the left side of my neck. Dr said HYPERthyroidism, so he removed the left lobe of my thyroid and I started taking synthroid. I was never the same! Always had severe abdominal pain and swelling, constipation, the anxiety and depression continued along with forgetfulness, mood swings, and fatigue. This whole time all Dr would say is its your thyroid, but all my levels were normal so my question is HOW??? My 2nd Preg in 2002 was the same except the thyroid was fine and I gained a lot of weigt. The third 2006 the same as the 2nd and HYPOthyroidism, so they removed the right lobe as well. Nothing changed at all! the symptoms stayed the same, even when all TSH, T3, and T4 levels were normal. I have also developed joint pain, nausea after eating, migraines, and endless headaches along with some vision problems.I had never heard of Celiac Disease until a few weeks ago, so I asked my Dr. about it. He was more dismissive than anything. But after having an anxiety attack and passing out while driving (thank God no one was hurt) and non stop migraines for six weeks, something has to give. I have seen a neurologist who said everything with my brain is fine and I have seen a psychiatrist that says I am bipolar (but i have never had a manic episode in my life, a little anxiety and a little depression but that's it) So sorry!!! I didn't mean to write a book! and please excuse the cliche but I am sick and tired of being sick and tired!!! I have a family to take care of I don't have time to be sick! Any ideas or suggestions!?!?!?

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My neurologist suggested I go gluten-free to see if it helps with my symptoms before I get tested because I have no insurance and the test can be quite costly. I'm twenty eight and I've been miserable for nearly 11 years. It all started when I was seventeen. I started my family at an early age, the pregnancy was miserable!!! I was always sick, no energy, severe anxiety attacks, blood clots, depression, non-stop labor pain, I was always hungry, could never get satisfied and couldn't gain weight ( I was always small before I got preg I was 5'8" 105, when I gave birth I was 120, all belly). Shortly after giving birth (days) I developed a large goiter on the left side of my neck. Dr said HYPERthyroidism, so he removed the left lobe of my thyroid and I started taking synthroid. I was never the same! Always had severe abdominal pain and swelling, constipation, the anxiety and depression continued along with forgetfulness, mood swings, and fatigue. This whole time all Dr would say is its your thyroid, but all my levels were normal so my question is HOW??? My 2nd Preg in 2002 was the same except the thyroid was fine and I gained a lot of weigt. The third 2006 the same as the 2nd and HYPOthyroidism, so they removed the right lobe as well. Nothing changed at all! the symptoms stayed the same, even when all TSH, T3, and T4 levels were normal. I have also developed joint pain, nausea after eating, migraines, and endless headaches along with some vision problems.I had never heard of Celiac Disease until a few weeks ago, so I asked my Dr. about it. He was more dismissive than anything. But after having an anxiety attack and passing out while driving (thank God no one was hurt) and non stop migraines for six weeks, something has to give. I have seen a neurologist who said everything with my brain is fine and I have seen a psychiatrist that says I am bipolar (but i have never had a manic episode in my life, a little anxiety and a little depression but that's it) So sorry!!! I didn't mean to write a book! and please excuse the cliche but I am sick and tired of being sick and tired!!! I have a family to take care of I don't have time to be sick! Any ideas or suggestions!?!?!?

What would be best is to get tested specifically for Celiac Disease to see if that's what you have. Also, you shouldn't go on a gluten free diet right before you're about to get tested for Celiac, otherwise the results can come up as if you don't have the disease even though you might.

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My neurologist suggested I go gluten-free to see if it helps with my symptoms before I get tested because I have no insurance and the test can be quite costly. I'm twenty eight and I've been miserable for nearly 11 years. It all started when I was seventeen. I started my family at an early age, the pregnancy was miserable!!! I was always sick, no energy, severe anxiety attacks, blood clots, depression, non-stop labor pain, I was always hungry, could never get satisfied and couldn't gain weight ( I was always small before I got preg I was 5'8" 105, when I gave birth I was 120, all belly). Shortly after giving birth (days) I developed a large goiter on the left side of my neck. Dr said HYPERthyroidism, so he removed the left lobe of my thyroid and I started taking synthroid. I was never the same! Always had severe abdominal pain and swelling, constipation, the anxiety and depression continued along with forgetfulness, mood swings, and fatigue. This whole time all Dr would say is its your thyroid, but all my levels were normal so my question is HOW??? My 2nd Preg in 2002 was the same except the thyroid was fine and I gained a lot of weigt. The third 2006 the same as the 2nd and HYPOthyroidism, so they removed the right lobe as well. Nothing changed at all! the symptoms stayed the same, even when all TSH, T3, and T4 levels were normal. I have also developed joint pain, nausea after eating, migraines, and endless headaches along with some vision problems.I had never heard of Celiac Disease until a few weeks ago, so I asked my Dr. about it. He was more dismissive than anything. But after having an anxiety attack and passing out while driving (thank God no one was hurt) and non stop migraines for six weeks, something has to give. I have seen a neurologist who said everything with my brain is fine and I have seen a psychiatrist that says I am bipolar (but i have never had a manic episode in my life, a little anxiety and a little depression but that's it) So sorry!!! I didn't mean to write a book! and please excuse the cliche but I am sick and tired of being sick and tired!!! I have a family to take care of I don't have time to be sick! Any ideas or suggestions!?!?!?

Testing is not required of course, however it is better to get it done BEFORE going gluten free if you ever plan to have testing done at all. You must be eating gluten in order for the antibody tests to show up positive. If you are gluten-free the test will be negative. You could also be gluten intolerant and show up negative however--in that case, going gluten-free is the most accurate "test". I was in a similar position as you when I went gluten free. I had spent a ton of money on testing for other things and was sick of dealing with the medical profession. I was desperate to feel better so I did an elimination diet and came up with gltuen as the main cause of most of my health problems. It was only after that that I realized that I would have to add back gluten in order to be tested for celiac. I so wish my drs had just run that one celiac test panel instead of all the expensive tests they did run that turned up nothing. Fortunately gluten makes me so ill that I don't doubt my diagnosis one bit. Unfortunately, I can never go back to eating it for the testing to "prove" it to anyone. My family members refuse to be tested even though they have symptoms. They are mostly supportive of me (especially my husband--he's been great since he saw me at my sickest and he's seen how much better I've gotten since being gluten-free) but my extended family mostly thinks this is a fad diet not medically necessary. If you can stick to the diet without having any doubts or second thoughts and deal with other people doubting you there is no reason to have testing done. If eating gluten-free makes you feel better then you have your answer and you don't need a dr's permission to be gluten-free. You may want to find a dr that can check your vitamin levels though. Also gluten-free is not just like flipping a switch and the symptoms are gone. Especially when you have neourological symptoms, it can take a few months and you may need to cut out more than gluten for a while to feel better (many people have trouble with dairy or soy). Also you may want to get tested first just so that your kids can be tested. Because this is a genetic disease if you have it they might too and you might want them to know before they get sick--it could prevent them from having to go through all that you did with your thyroid. These are all just things to thing about.

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I agree with every word of what GlutenFreeManna has stated.

If you can't afford the test, then, by all means, go gluten free and see what happens. If you feel better, you have your answer--you either have celiac or gluten sensitivity. Either way, the treatment is the same.

I sincerely hope that gluten IS your problem, because I would like you to get better. Also, I think you're on the right track.

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You have a wise neurologist. It sounds like he might give you an 'official' diagnosis if your symptoms resolve. You could ask for a call back from him to ask him if he will and explain that your family will want one if the diet works. You do sound like one of us and I wish my neuro had been that good. I even had diagnostic brain lesions but mine was still clueless and told me I wanted to be sick!. I would have been diagnosed years before I was if I had your doctor.

Some of us also show false negative on testing which can cause even more confusion. I am one of those. In the end your response to the diet is what really counts but do be aware that it can take a bit of time to heal so be patient and read as much here as you can about what you need to do the diet. Ask any other questions you need to.

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One word of caution for you...while going gluten free may really help you, you should also consider that there is a difference between being gluten sensitive and having celiac disease. While the gluten free diet is the same, the long time effects of the diet you are currently on are much different. Most people that have celiac disease continue to have some follow up care to make sure that their systems are healing properly. If you never find out if you have it or not you may not get the best follow up care. Just a thought. i am really struggling right now. I am three years gluten free and starting to have problems again. NO celiac specialts will see me because I don't have a diagnosis and I cannot go back to eating gluten to be tested. Just a little advice from someone that did it on their own and is suffering a few consequences from not being diagnosed.

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I had my biopsies done and am glad I did for presence of mind. I did not get sick from eating gluten at all so was in denial that I could have celiac. If I did not get them done I still would be always wondering whether I truly had it or not and likely would still be consuming gluten and loving it. Now without question I know and am super diligent as a result. My diagnosis could very well have saved my life.

At the same time, I can fully understand how those who get frightfully ill would not want to even contemplate going on a gluten challenge. It can be a tough situation!

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Thank you so much everyone! For your concern, thoughts, and suggestions. I have only been gluten free for about 12 days, but I have notices a few small but assuring sign that gluten may be the problem along with dairy. I am eating only whole foods and have noticed a big difference in how I feel after I eat. I haven't been as nauseated after eating and my abdomen isn't swelling in excess of 3-6 inches after every meal. I am still having sever migraines and headaches nearly every day, but I have read that they may get worse during the first month or so after going gluten free. I spoke with my PC and he has agreed to run the necessary blood test to check for Celiac Disease, which means I will need to start eating gluten again :( It's only been about 12 days so maybe it will not be too bad going back. Hope you all have a blessed week! Thanks again Crystal!

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