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Newly Diagnosed - Please Help!


Jae

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Jae Newbie

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

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

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

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

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

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

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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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