Scared

[huffalynn]

Ok guys… I know some of you have been dealing with this disease for a long time. I was just diagnosed last week and the more I Google the more scared I get. I already have pcos and went into menopause when I was 30, am now 49. I am reading about osteoporosis and thyroid disease, cancer etc and how they are really prevalent with Celiac.  My doctors are really not giving me any guidance other than give up gluten. I am wearing my husband out!!! Please tell me this isnt as bad as it seems to be in my head. I have a 12 year old and want to be able to keep up with him and not die before he has my grandchildren!! Freaking out here. Thank you for reading. 

[tessa25]

I believe as long as you are good about always being gluten free your blood test numbers should be normal and you shouldn't develop other issues. There are always exceptions, but for most it's just a game of avoid the gluten.

[Sabaarya]

On 3/12/2022 at 6:53 AM, huffalynn said:

Ok guys… I know some of you have been dealing with this disease for a long time. I was just diagnosed last week and the more I Google the more scared I get. I already have pcos and went into menopause when I was 30, am now 49. I am reading about osteoporosis and thyroid disease, cancer etc and how they are really prevalent with Celiac.  My doctors are really not giving me any guidance other than give up gluten. I am wearing my husband out!!! Please tell me this isnt as bad as it seems to be in my head. I have a 12 year old and want to be able to keep up with him and not die before he has my grandchildren!! Freaking out here. Thank you for reading. 

Hi. I was exactly the same when I was diagnosed last year in August and I’m still a lil bit. My doctor wants me to have repeat biopsy and I’m not ready yet,cause afraid of the result. I’ve also started antidepressant, I was not able to handle that much stress and live in fear nonstop and medication helps a lot with lots of my celiac related symptoms. Anyways,to my understanding as long as you are gluten free you are fine,after your small intestine heals you are 100% safe,again as long as you are gluten free. There are a lot of people having celiacs for 20-30 years without knowing about their diagnose and still alive. Lots of people in this site found out about their disease later in their life and they are ok,not 100% healthy but alive without dangerous side effects. After my diagnose I’ve asked all my family members to get checked and none of them cared,finally I had my mom tested and guess what,she is positive as well,and she refuses to start gluten-free diet. Just follow gluten-free diet,start taking vitamins and supplements cause most of our symptoms related to vitamin and iron deficiencies. I do have 4 year old and worried about him as well,he is so thin,will have GI appointment very soon to figure out if he has it as well. Better sooner than late in life… 

You will be fine,don’t worry.

[Scott Adams]

Welcome to the forum, and this article might be helpful. Also, most of the risk of associated disorders will decrease dramatically after going gluten-free.

 

[MADMOM]

On 3/17/2022 at 2:51 AM, Sabaarya said:

Hi. I was exactly the same when I was diagnosed last year in August and I’m still a lil bit. My doctor wants me to have repeat biopsy and I’m not ready yet,cause afraid of the result. I’ve also started antidepressant, I was not able to handle that much stress and live in fear nonstop and medication helps a lot with lots of my celiac related symptoms. Anyways,to my understanding as long as you are gluten free you are fine,after your small intestine heals you are 100% safe,again as long as you are gluten free. There are a lot of people having celiacs for 20-30 years without knowing about their diagnose and still alive. Lots of people in this site found out about their disease later in their life and they are ok,not 100% healthy but alive without dangerous side effects. After my diagnose I’ve asked all my family members to get checked and none of them cared,finally I had my mom tested and guess what,she is positive as well,and she refuses to start gluten-free diet. Just follow gluten-free diet,start taking vitamins and supplements cause most of our symptoms related to vitamin and iron deficiencies. I do have 4 year old and worried about him as well,he is so thin,will have GI appointment very soon to figure out if he has it as well. Better sooner than late in life… 

You will be fine,don’t worry.

hello - i’ve been on this journey for 13 months and read and read all sorts of things when i got diagnosed - i made my GI swear that i would be ok and i wouldn’t get cancer from this - his reply was “ i’ve been a GI for 30 years and have never lost someone to the c word because of celiac”  i trust him and i trust the many ppl on this site who have guided me and discussed their stories with me - nobody is promised forever - but from what i’ve hears and read / as long as you are eating gluten  free you are healing and you should be fine!  please don’t be afraid - i was terrified but realized how much healthier i was becoming on this road to healing - 13 months later my blood work has never looked better and my celiac levels after only 8 months ( going for blood work again soon) was already a touch over the normal range !  you can do this 

[Sabaarya]

2 hours ago, MADMOM said:

hello - i’ve been on this journey for 13 months and read and read all sorts of things when i got diagnosed - i made my GI swear that i would be ok and i wouldn’t get cancer from this - his reply was “ i’ve been a GI for 30 years and have never lost someone to the c word because of celiac”  i trust him and i trust the many ppl on this site who have guided me and discussed their stories with me - nobody is promised forever - but from what i’ve hears and read / as long as you are eating gluten  free you are healing and you should be fine!  please don’t be afraid - i was terrified but realized how much healthier i was becoming on this road to healing - 13 months later my blood work has never looked better and my celiac levels after only 8 months ( going for blood work again soon) was already a touch over the normal range !  you can do this 

Thank you:). It’s been 6 months now and I can tell that I feel better. But I still do have ups and downs. I was perfectly fine for 2 months while I was taking antidepressants,then I decided to stop it and my symptoms started again. I decided to start antidepressants again. It’s been 2 weeks now and I do still have mild symptoms. Maybe I got glutened, I have no idea. 3 days ago I had Turkish coffee and feel like it made me worse… 

[MADMOM]

1 minute ago, Sabaarya said:

Thank you:). It’s been 6 months now and I can tell that I feel better. But I still do have ups and downs. I was perfectly fine for 2 months while I was taking antidepressants,then I decided to stop it and my symptoms started again. I decided to start antidepressants again. It’s been 2 weeks now and I do still have mild symptoms. Maybe I got glutened, I have no idea. 3 days ago I had Turkish coffee and feel like it made me worse… 

try not to take anti depressants and focus on eating healthy and clean - i promise you things will improve - i get a hiccup here and there from time to time but i’ve never felt more energetic and healthy / ❤️

[Sabaarya]

My stool texture is abnormal and frequent  without antidepressants and my doctor said I have anxiety related IBS also I get ear pressure. My GI doctor wants to do repeat biopsy but I did postpone it until June..

[MADMOM]

1 hour ago, Sabaarya said:

My stool texture is abnormal and frequent  without antidepressants and my doctor said I have anxiety related IBS also I get ear pressure. My GI doctor wants to do repeat biopsy but I did postpone it until June..

use supplements like ashkwanda - i may have spelled it wrong and melatonin to relax and take a probiotic - i use garden of life 50 billion cfu they work wonders on ur gut and help stabilize ur poop - amazon sells them 

[Sabaarya]

29 minutes ago, MADMOM said:

use supplements like ashkwanda - i may have spelled it wrong and melatonin to relax and take a probiotic - i use garden of life 50 billion cfu they work wonders on ur gut and help stabilize ur poop - amazon sells them 

I’ve taken them for a week and my stool got so bad,maybe because I was so anxious and had only negative thoughts… I’ll try it out again. Thank you 🙏❤️

[Scott Adams]

I just want to mention that Ashwagandha can increase blood pressure, and possibly interact with certain medications. Be sure to check any supplements you take for side effects and drug interactions. 

[MADMOM]

Just now, Scott Adams said:

I just want to mention that Ashwagandha can increase blood pressure, and possibly interact with certain medications. Be sure to check any supplements you take for side effects and drug interactions. 

absolutely you should always check - i guess i should have mentioned that