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Gluten withdrawal?


Momma2PirateNPrincess

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Momma2PirateNPrincess Rookie

Hi all! I started another post Thursday in this section but don't see it anywhere. Hope it's ok for me to start a new one! 

I'm new to the gluten-free diet. Today is day 9. I haven't officially been diagnosed with Celiac just gluten sensitivity via saliva. I've had some issues that came out of nowhere almost 5 months ago. Now day 9 and things aren't much different. In fact I feel a little worse (more exhaustion, more off balance spells). I'm trying really hard to convince myself this gluten-free lifestyle is worth it but since I'm seeing no improvement it's SO hard! I know 9 days is nothing but 2 gluten-free friends said they felt better overnight. Maybe my expectations are off :/


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flowerqueen Community Regular

 

Not everyone feels better overnight. Some people that have had problems for years and then go gluten free, a lot of damage has already been done, so it makes sense that it takes longer to improve their health.  In the case of coeliacs, which may or may not be the same for you,  damage is done not only to the gut, but other areas are affected, for example, anaemia, malabsorption of nutrients, hair loss, bone thinning, muscle weakness etc., and these things don't disappear overnight. 

I found my gut problems improved, but also had withdrawal symptoms, including vomiting after meals. 

Everyone is different and you can't compare yourself with others. Carry on with your gluten free eating plan as things should settle down eventually. 

cyclinglady Grand Master

Were you not able to get a celiac blood test?  The saliva test is not even accepted by celiac experts.  It can be difficult to adhere to the diet if you are not confident about your diagnosis.  Depending on the amount of damage, healing can take months to years for a celiac.  

Flowerqueen offered excellent advice!  Eating whole foods and avoiding processed gluten free foods is best for expediting the healing process too!  

Momma2PirateNPrincess Rookie

I'm seeing a functional dr. He ran a bunch of blood tests and discovered low vit D, immflamation in my body and problems digesting protein. However none of the blood test was for gluten issues. He had me do a 24 HR saliva test which also tested for gliadin (sorry if I misspelled that!) He didn't seem too concerned about celiac being a possibility but did say if things haven't improved in a couple months he'd order further testing. 

I don't eat much processed gluten free food except a piece of bread in the morning and the occasional bun, pancakes, muffin or bowl of steel cut oats (all gluten-free of course). 

 

 

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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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