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rrr22

Am I Celiac?

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Hello. From doing my own research, my symptoms appear to mirror those of Celiac Disease. However, I have not gone through a Celiac diagnosis with a doctor to this point. I have only had a blood test which came back negative. I have been diagnosed as hypoglycemic.

Shortly or sometimes hours after ingesting something that I suspect may contain gluten, I get a headache, nausea and often heart palps. That night, I will wake up with a hyperactive type feeling & anxiety - thus trouble sleeping. This often occurs several times throughout the night. The next morning, my resting blood sugar has dropped, I am fatigued throughout the day and experience eye irritation. During this post-gluten time period, my symptoms are at their worst after eating (gluten-free) meals. I get a heavy feeling in my stomach like I have eaten a very large meal (which I did not), I get headaches and a foggy/disoriented feeling. My main symptoms are headaches, fatigue and disorientation - However, I do not experience the severe stomach issues I have read related to Celiac.

If I remain gluten free, the intensity of my symptoms decreases each day until eventually going away b/t 1-4 weeks (depending on the degree of apparent gluten contamination). I also sleep much better throughout the night. The intensity of my symptoms appears to directly correlate to the amount of gluten I believe I may have consumed.

I appear very sensitive to gluten. Even several types of gluten free labeled products, such as different types vitamins, will bring about my symptoms. Does it appear I am Celiac? The degree to which I appear sensitive to gluten makes me think I may be celiac vs. simply gluten intolerant. Thoughts?

Thanks.

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I would agree with you that the degree to which you are reacting is indicative of Celiac. It seems like you have identified that your reactions are mostly neurological problems from eating gluten and they appear to go away when you do not eat it. Even though you tested negative you are likely Celiac. Your reactions seem to show that you react pretty seriously so you could just stay gluten free and assume you are Celiac. What you describe is quite consistent with someone who has neurological symptoms of Ceiac. You may find that over time you are increasingly sensitive to smaller and smaller amounts of gluten.

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I appear very sensitive to gluten. Even several types of gluten free labeled products, such as different types vitamins, will bring about my symptoms. Does it appear I am Celiac? The degree to which I appear sensitive to gluten makes me think I may be celiac vs. simply gluten intolerant. Thoughts?

If you tested negative, there is no way to know. People can test negative by blood and biopsy and still get very sick from gluten. Some are certainly false negative celiacs, but others have a strong non-celiac gluten intolerance.

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My initial test came back negative too. But I'd been easing off gluten to support my kids' new gluten-free lifestyle. I insisted the dr refer me to a GI for a deeper look. My dr then said I didn't fit the picture of celiac disease (I'm overweight). I then demanded the referral as I wasn't ALWAYS so fat (5 large-birth kids tends to add weight in some women!) and I'd experienced physical reactions to certain foods my entire life!

The test came back 'inconclusive'. There was something going on but my GI refused to rule out celiac disease completely and immediately put me on a gluten-free diet. That was nearly 7 years ago. Last year, this same GI dr did another endo on me, looking at all parts of my insides to see why I was still having issues. On top of that, I had an allergy skin-poke test done, + allergy blood panel done. No allergies came through, but the new test showed a brand new condition which is somehow linked to celiac disease:

mastocytic enterocolitis (I think I spelled it correctly here). The cause: an allergy to something I'm eating!

BUT I have no clue what it is! and neither do they!

There are other tests to do beyond the blood test. For one of my children, she had blood work, a stool sample, and an endo, all to verify that without a doubt she does have celiac disease. All were positive, but she did it at a time when she was on Very Gluten gluten diet for more than 1 month. Nothing was eliminated from her diet until AFTER all the tests were completed. My son has many symptoms but tested negative so far, however we did a gene test on him which means celiac disease has the potential of becoming active at any moment and must be tested every 3 years.

Taking out/altering your diet can change the results even enough to come back negative. As uncomfortable as it is, stay on the strict gluten laden diet for as long as possible before a test(don't kill yourself over it though) and don't feel bad about requesting a retest. You are allowed to ask for a second opinion, or even a new dr as I did! And make sure you see a dr that truly specializes in celiac/gluten related illnesses as not all GI drs are, they just know enough to slap a label on ya and send ya out the door.

Its your only body, and you know it better than anyone else! Don't stop pushing for proper care until you are satisfied with the results. If 3 drs have the same results, and there are truly no other specialists/options, then take out the gluten on your own and avoid things that make you uncomfortable, regardless of a negative test result. You don't have to have a disease or allergy or doctor's note to not like something. :)

Living shouldn't hurt. I hope you can get things worked out soon!

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Thanks to everyone for your feedback. I appreciate it.

My initial test came back negative too. But I'd been easing off gluten to support my kids' new gluten-free lifestyle. I insisted the dr refer me to a GI for a deeper look. My dr then said I didn't fit the picture of celiac disease (I'm overweight). I then demanded the referral as I wasn't ALWAYS so fat (5 large-birth kids tends to add weight in some women!) and I'd experienced physical reactions to certain foods my entire life!

The test came back 'inconclusive'. There was something going on but my GI refused to rule out celiac disease completely and immediately put me on a gluten-free diet. That was nearly 7 years ago. Last year, this same GI dr did another endo on me, looking at all parts of my insides to see why I was still having issues. On top of that, I had an allergy skin-poke test done, + allergy blood panel done. No allergies came through, but the new test showed a brand new condition which is somehow linked to celiac disease:

mastocytic enterocolitis (I think I spelled it correctly here). The cause: an allergy to something I'm eating!

BUT I have no clue what it is! and neither do they!

There are other tests to do beyond the blood test. For one of my children, she had blood work, a stool sample, and an endo, all to verify that without a doubt she does have celiac disease. All were positive, but she did it at a time when she was on Very Gluten gluten diet for more than 1 month. Nothing was eliminated from her diet until AFTER all the tests were completed. My son has many symptoms but tested negative so far, however we did a gene test on him which means celiac disease has the potential of becoming active at any moment and must be tested every 3 years.

Taking out/altering your diet can change the results even enough to come back negative. As uncomfortable as it is, stay on the strict gluten laden diet for as long as possible before a test(don't kill yourself over it though) and don't feel bad about requesting a retest. You are allowed to ask for a second opinion, or even a new dr as I did! And make sure you see a dr that truly specializes in celiac/gluten related illnesses as not all GI drs are, they just know enough to slap a label on ya and send ya out the door.

Its your only body, and you know it better than anyone else! Don't stop pushing for proper care until you are satisfied with the results. If 3 drs have the same results, and there are truly no other specialists/options, then take out the gluten on your own and avoid things that make you uncomfortable, regardless of a negative test result. You don't have to have a disease or allergy or doctor's note to not like something. :)

Living shouldn't hurt. I hope you can get things worked out soon!

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