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Newly Diagnosed - Please Help!

Jae

By Jae
in Coping with Celiac Disease

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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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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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