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Will I Ever Feel Better?

WisconsinKim

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WisconsinKim Newbie
WisconsinKim
Posted

Hi everyone - I was diagnosed with celiac on Thursday of this week. I had the endoscopy on Wednesday and my doc said it was positve just by seeing my gut. The biopsy came through the next day confirming it.

 

While I understand the diagnosis and will gladly embrace the gluten-free lifestyle (and don't expect overnight cures), I doubt I will every feel normal again. I was misdiagnosed 20 years ago and while my stomach was ok for a while, for the last couple of years, I am sick almost every day and in the bathroom it feels like constantly. I am chronically tired and can't seem to get enough sleep. Has anyone felt this way that can tell me it will get better? My doctor promises he will make this better but I can't imagine a day without worring about running to the bathroom!

 

Thanks in advance. I'm glad this forum is here. It was wonderful to find!

 

Kim

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kareng Grand Master
kareng
Posted

It may take a few months, or a few years, but you will realize, one day, that you forgot to check the location of the bathroom at the new grocery. And then you realize you didn't need it!

FYI - last names not required in forum posts. You can edit yours out if you would like. Edit works for about 2 days after a post

1desperateladysaved Proficient
1desperateladysaved
Posted

I had 30 years of undiagnosed celiac disease symptoms, at least.  The worst of my symptoms were fogginess and fatigue.  I have been gluten free for about 18 months.  In the beginning, I feared that I felt like I would die, or never recover.  But, I am better.  Therefore, I believe there is hope for you.

 

I drove through much of you beautiful state on 94 yesterday!  I hope you will soon be able to enjoy it.

 

Get Well  ***

D

AlwaysLearning Collaborator
AlwaysLearning
Posted

If your experience is anything like mine, you'll start to see/feel noticeable differences in your body in the first few days of going gluten free. Despite being in the midst of withdrawal, I was ecstatic! And I had so much hope for a future with fewer problems! 

Seriously, little things throughout my entire body that I didn't even realize were problems and definitely hadn't related to gluten were suddenly gone along with another list of things that had been cropping up here and there for decades! More than 20 years of my adult life going to doctors for various aches and pains, all of them telling me that there was nothing wrong with me, and now I had finally found a cause for not some, but all of them!!! I was positively giddy.

There is no way I'd be the least bit tempted to return to gluten. And though there are definitely times when I feel deprived or disappointed when I can't partake in something, the thought is fleeting. Instead, I've delved into my own kitchen and have probably tripled the number of dishes that I can make that taste better than those I've been served in even the best restaurants. 

That said, some of my problems got way worse because I didn't realize that I also had vitamin deficiencies which took a while longer to get diagnosed and am just now starting to get control of.

I slept a lot more than normal in the first week of going gluten free, but I figured that was partly due to recovering from the extreme insomnia that gluten had been causing for several months prior. But that only lasted a week.

A couple months later, I started looking into deficiencies when I had a few scary days where I simply couldn't stay awake for more than an hour at a time despite getting a full night's sleep the night before. Popping a good gluten-free multivitamin seemed to help within minutes and some online research confirmed that there was a link between vitamin deficiencies and fatigue.

A doctors appointment confirmed vitamin D, B12, and iron deficiencies, some of the more common deficiencies for those with gluten allergies. They have been a lot tougher to fix than I had hoped and months later I'm still struggling with them and the idea that I need to take any sort of pill, even if it is an over-the-counter supplement. 

If your doctor didn't already check your vitamin/mineral/hormone levels, I'd ask for it to be done to get ahead of any problems. And in the meantime, track down a gluten-free multivitamin to add to your arsenal.

Oh, and this forum has been a godsend! If it weren't here as a source of information I'd probably still be getting accidental glutenings on a regular basis. Take the contamination and hidden sources issues seriously and you should do just fine.

nvsmom Community Regular
nvsmom
Posted

Hang in there. It can take quite a while to get better, especially in those who have been living with celiac disease undiagnosed for a few decades. i noticed an improvement in stomach bloat and pain within days but then I hit a withdrawal and my energy levels and mood took a nose dive for about two weeks - I still remember that headache. I then felt quite improved for three months until i went through some sort of autoimmune attack for a few months. I am now gluten-free for one year, and have my thyroid problems properly treated, and I can honestly say that i feel the best I have in about 5 years or so.

 

Some symptoms take a long time to clear up. My fatigue took almost a year (I think it was partially thyroid related too) and my bathroom habits took about 8 months to change. If your fatigue hasn't improved in a few more months (by Halloween say), you might consider looking into other causes of fatigue like thyroiditis.

 

I agree that vitamins are helpful to energy. Potassium, calcium, ferritin, iron, folate, D, B12 and zinc are often low.

 

Best wishes.

dilettantesteph Collaborator
dilettantesteph
Posted

There are quite a few people on here who were very sick on diagnosis, myself included.  It can take some time, but we got better.  It was like I was aging in reverse for a long while.  I couldn't believe all the things that got better.  I had no idea that all these things could be caused by celiac disease.  Enjoy it, and be patient with yourself as you learn the diet.

WisconsinKim Newbie
WisconsinKim
Posted
  • Author

Thanks everyone. I still have daily stomach issues and I am just frustrated. I guess my stomach is better in that before diagnosis I was constantly gassy and bloated and that's better. But I'm still going several times a day.

 

I expected the fatigue to last. My doc said that would be one of the last symptoms to go away. I guess I need to just relax and let my body heal. I am thankful for the support of this group, however!

 

k

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notme Experienced
notme
Posted

hi, kim - welcome to the best club you never wanted to join   :huh:

 

many of us were misdiagnosed for a very long time but take heart!  it may take awhile, but little by little you will start to feel better.  pretty soon, you will be taking your life back <sounds corny, but it's true :)  my doctor could also see the damage when they did my endoscopy - it doesn't happen overnight, that is years and years of untreated celiac - so, if you are like me, it will take a while to heal.  i am still noticing improvements and i am 3 years gluten free.  did you read the newbie 101 thread yet?  it has a ton of useful info and tips to help you along.  ask questions if you have them - good luck!  :)

Simone52 Newbie
Simone52
Posted

Hi everyone - I was diagnosed with celiac on Thursday of this week. I had the endoscopy on Wednesday and my doc said it was positve just by seeing my gut. The biopsy came through the next day confirming it.

 

While I understand the diagnosis and will gladly embrace the gluten-free lifestyle (and don't expect overnight cures), I doubt I will every feel normal again. I was misdiagnosed 20 years ago and while my stomach was ok for a while, for the last couple of years, I am sick almost every day and in the bathroom it feels like constantly. I am chronically tired and can't seem to get enough sleep. Has anyone felt this way that can tell me it will get better? My doctor promises he will make this better but I can't imagine a day without worring about running to the bathroom!

 

Thanks in advance. I'm glad this forum is here. It was wonderful to find!

 

Kim

Dear Kim

 

Yes!  I promise.  And it will be miraculous.  You will have to be very diligent and disciplined and probably within six weeks (yes, maybe that soon) to 3 months. I was misdiagnosed from the time I was an infant (60 years ago).  You already know the symptoms.  I had them all including an auto-immune, collagen-vascular disease that was misdiagnosed (of course) as rhumatoid arthritis. This is now in remission.  It was secondary to the celiac which all but destroyed my gut.  But after twenty years of being gluten-free I can attest to the cure.  Drink a lot of water.  Also aloe vera water is good for healing the gut. Try a little of that a day.

 

It is MUCH easier these days to be gluten-free.  The products are plentiful.  I love the Tinkyada brown rice pasta.  Udi's breads are great.

 

Please keep in touch.  I am anxious to hear how quickly your recovery will be.

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