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Newly Diagnosed - Please Help!

Jae

By Jae
in Coping with Celiac Disease

Recommended Posts

Jae Newbie
Jae
Posted

Hi,

 

I was informed yesterday after a biopsy and blood tests that I have been suffering with coeliac disease for a number of years and the villi in my intestine is pretty damaged.....

 

I have today not eaten anything gluten AT ALL yet I am more bloated and lethargic than I have been in a long time (my coeliac symptoms are mostly vitamin dificiencies...

 

Is it usual to have this reaction when you first convert to Gluten free or could I have a intolerence to something in the Gluten free products?

 

many thanks for your help

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kareng Grand Master
kareng
Posted

I think 1 day is a little soon to worry about other intolerances.   :D

 

It an take months for the intestines to heal and then the deficiencies to get better.

 

Sometimes, when someone goes gluten-free, they eat differently.  Maybe more fiber.  Maybe less fiber.  Maybe more sugar., etc.  

 

Read the newbie thread for some basic info & give it some time

 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Jae Newbie
Jae
Posted
  • Author

I think 1 day is a little soon to worry about other intolerances.   :D

 

It an take months for the intestines to heal and then the deficiencies to get better.

 

Sometimes, when someone goes gluten-free, they eat differently.  Maybe more fiber.  Maybe less fiber.  Maybe more sugar., etc.  

 

Read the newbie thread for some basic info & give it some time

 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Thank you so much for your reply... I just assumed I wouldnt feel like this after cutting out Gluten, I will just be patient and give it time..

 

thanks again :)

flowerqueen Community Regular
flowerqueen
Posted

Hi,

 

I was informed yesterday after a biopsy and blood tests that I have been suffering with coeliac disease for a number of years and the villi in my intestine is pretty damaged.....

 

I have today not eaten anything gluten AT ALL yet I am more bloated and lethargic than I have been in a long time (my coeliac symptoms are mostly vitamin dificiencies...

 

Is it usual to have this reaction when you first convert to Gluten free or could I have a intolerence to something in the Gluten free products?

 

many thanks for your help

Hi,

 

It took a few months for my body to settle down after giving up gluten and wheat.  It won't be an overnight miracle; think of all the damage that the gluten has done to your body over time, so it may take a while before you start to feel anywhere near 'normal'.  I found that my body went into detox mode after giving up gluten and wheat, and that can take its time to resolve itself.  

 

We are all different though, so bear this in mind.  I was also like you, I was malnourished after all the years of not absorbing vitamins and minerals.  My ferritin levels were rock bottom and I was so weak, I had to walk with the aid of a stick.  Don't be too disheartened, you are just starting out, the good thing is, you've had your condition diagnosed, now give your body a little time to heal. :)

nvsmom Community Regular
nvsmom
Posted

I agree. It can take months to get better.  My blood tests were still abnormal (slightly) at a year gluten-free, and I didn't feel better until 2 years gluten-free, although there were large improvements during that time.

 

Plus, many people experience a withdrawal when they go gluten-free. Headaches, fatigue, stomach issues can all get worse before they get better.  Remember that if things take a temporary turn for the worse.

 

Good luck and welcome to the boards.  :)

Jae Newbie
Jae
Posted
  • Author

Thank you everyone for your advice... Is weight gain also an issue once having b12 injections and eating gluten free? I lost a lot of weight quickly before I was diagnosed but now I'm putting it back on, which isn't a bad thing, just concerned I won't stop now

foam Apprentice
foam
Posted

It can take years to get better, some people dont recover. B12 shots will fix most of your curent problems within hours of the first shot. Theres a chance youve developed further immune system disease but hopefully not. Youll have to find your own way with foods but my tip is more fats, less carbs.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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