Post Diagnosis Issues

[MK24]

Hi all! I'm brand new to this site, and really excited to see what this has to offer.

I'm writing because, to be honest, I'm frustrated and not sure where else to turn. I'm reaching out to see if any others have had similar experiences, or if anyone has any advice.

I was diagnosed with celiac on April 23, 2010. I've kept to the strict gluten free diet ever since. I'm proud to say that I don't "cheat" on the diet, and any gluten ingestion is purely accidental and usually cross contamination related.

My problem is that, nearly 2 years into the diet, my symptoms haven't really been alleviated. The biggest problem is a constant and sometimes debilitating nausea, particularly after I eat (yes, even gluten free foods.) Since the diagnosis, I've even gained other symptoms: fatigue, insomnia, anxiety, night sweats, unexplained fevers, week long migraines, sinus tachycardia (even at rest), graying or blacking out upon standing....the list goes on and on. I've seen so many doctors, and it seems that none of them are taking me seriously.

My TTG numbers are within normal range, so its not some unintentional gluten poisoning. My biopsy has shown that my gut has healed. In an attempt to explain everything, I've also been diagnosed with a chronic vitamin deficiency in many vitamins (B12 and D are the most notable, although there were others that were mildly deficient), and possible dysautonomia, soy allergy, and tyramine intolerance. My diet is now incredibly limited, and although I'm giving everything my best effort, nothing so far seems to be working.

Firstly, has this happened to anyone else? Did you recover? Did you find an answer? Or are you still suffering? Does anyone have any suggestions as to what I can do? Anything at all would be so helpful. Please, I'm kind of desperate now.

Secondly, for those who have unresolved symptoms, how do you cope? What do you do to emotionally pull you through? If I can at least help that, maybe everything else will become just that much easier.

Thank you so much!

[Metoo]

Hi all! I'm brand new to this site, and really excited to see what this has to offer.

I'm writing because, to be honest, I'm frustrated and not sure where else to turn. I'm reaching out to see if any others have had similar experiences, or if anyone has any advice.

I was diagnosed with celiac on April 23, 2010. I've kept to the strict gluten free diet ever since. I'm proud to say that I don't "cheat" on the diet, and any gluten ingestion is purely accidental and usually cross contamination related.

My problem is that, nearly 2 years into the diet, my symptoms haven't really been alleviated. The biggest problem is a constant and sometimes debilitating nausea, particularly after I eat (yes, even gluten free foods.) Since the diagnosis, I've even gained other symptoms: fatigue, insomnia, anxiety, night sweats, unexplained fevers, week long migraines, sinus tachycardia (even at rest), graying or blacking out upon standing....the list goes on and on. I've seen so many doctors, and it seems that none of them are taking me seriously.

My TTG numbers are within normal range, so its not some unintentional gluten poisoning. My biopsy has shown that my gut has healed. In an attempt to explain everything, I've also been diagnosed with a chronic vitamin deficiency in many vitamins (B12 and D are the most notable, although there were others that were mildly deficient), and possible dysautonomia, soy allergy, and tyramine intolerance. My diet is now incredibly limited, and although I'm giving everything my best effort, nothing so far seems to be working.

Firstly, has this happened to anyone else? Did you recover? Did you find an answer? Or are you still suffering? Does anyone have any suggestions as to what I can do? Anything at all would be so helpful. Please, I'm kind of desperate now.

Secondly, for those who have unresolved symptoms, how do you cope? What do you do to emotionally pull you through? If I can at least help that, maybe everything else will become just that much easier.

Thank you so much!

What did they do for your vitamin D deficiency? Did you get your level to rise?

I was diagnosed with a severe deficiency in Vitamin D, last april prior to going gluten free. I was put on a heavy dose of supplements until my level raised, 3 months later. Anyways, many of your symptoms the extreme fatique, insomnia, nausea, the low blood pressure upon standing to me these all sound like how I felt last year. Within 2 months of treatment I felt like a new person!

I can still tell when my vitamin D gets low, because I start feeling that way again, so I up my dose for a few days and usually it goes away. I have had less swing though in my level since going gluten free I think.

[Bubba's Mom]

Hi all! I'm brand new to this site, and really excited to see what this has to offer.

I'm writing because, to be honest, I'm frustrated and not sure where else to turn. I'm reaching out to see if any others have had similar experiences, or if anyone has any advice.

I was diagnosed with celiac on April 23, 2010. I've kept to the strict gluten free diet ever since. I'm proud to say that I don't "cheat" on the diet, and any gluten ingestion is purely accidental and usually cross contamination related.

My problem is that, nearly 2 years into the diet, my symptoms haven't really been alleviated. The biggest problem is a constant and sometimes debilitating nausea, particularly after I eat (yes, even gluten free foods.) Since the diagnosis, I've even gained other symptoms: fatigue, insomnia, anxiety, night sweats, unexplained fevers, week long migraines, sinus tachycardia (even at rest), graying or blacking out upon standing....the list goes on and on. I've seen so many doctors, and it seems that none of them are taking me seriously.

My TTG numbers are within normal range, so its not some unintentional gluten poisoning. My biopsy has shown that my gut has healed. In an attempt to explain everything, I've also been diagnosed with a chronic vitamin deficiency in many vitamins (B12 and D are the most notable, although there were others that were mildly deficient), and possible dysautonomia, soy allergy, and tyramine intolerance. My diet is now incredibly limited, and although I'm giving everything my best effort, nothing so far seems to be working.

Firstly, has this happened to anyone else? Did you recover? Did you find an answer? Or are you still suffering? Does anyone have any suggestions as to what I can do? Anything at all would be so helpful. Please, I'm kind of desperate now.

Secondly, for those who have unresolved symptoms, how do you cope? What do you do to emotionally pull you through? If I can at least help that, maybe everything else will become just that much easier.

Thank you so much!

I've suffered from many of the same symptoms and was just "blown off" by Dr.s who didn't understand what this feels like. I was told it's *probably* menopause.

The nausea after eating might be gallbladder related..or maybe you're not producing the digestive enzymes you need? Take a digestive enzyme when you eat. Also, if you are taking a PPI medication, it can make your gallbladder function slow. When I went off mine the nausea got better. Not perfect yet, but better. So, that's something to consider? You have to be digesting your food well in order to get the vitamins you need from it.

Be sure you're taking a good probiotic too. It helps keep the balance in your gut in check and aids digestion as well.

Be sure you eat good fats like avacado, fish oil, olive oil. They help you absorb vitamins that you need. AND be sure you are taking a good multi-vitamin along with a B complex.

I know this sounds like a handfull of supplements, but sometimes you have to go that route to get what you need?