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Horrible Relapse After More Than 3 Years


blancasagro

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blancasagro Newbie

Im looking for some advise here. I was diagnose with celiac in 2009.  Before I was diagnose I lost 20 pounds just in one month, Thank Good my gastroenterologist test me for gluten and it took just one month to get the right diagnosis to start my gluten free diet.

 

It took like a year and a half to feel normal, even after I started gluten free I had:

horrible pain in my stomach

diarrhea

insomnia

nightmares

sore joints

nausea

migraines

panic attacks

extreme fatigue...

 

My symptoms began to get better until most of them disappeared, maybe I had some nausea once in a while or some light stomach pain.

 

My problem is that maybe i got too confident on the variety of gluten free menus in the restaurants and started eating out like once in a week, gluten free pizza, or gluten free pasta and the diarrhea started again.  Now I feel horrible, my stomach pain is stronger than before.  The worst part is the extreme fatigue,I've been late for work almost daily for two weeks and I lost 9 pounds. I have no appetite, I'm having maybe two light lunches a day and minutes after I eat I need to go to the bathroom.  is frustrating feeling so bad after more than 3 years gluten free.  I thought I had won the battle against gluten, immediately I notice i got glutened I started eating just fruits, veggies and apple juice.  No milk, no meats, no fried foods, no tomato sauce, no processed foods...but I still feel horrible.  I had one ct scan, lots of labs and everything seems normal.  Im'having an endoscopy on Monday.  I have been feeling like this for two weeks and I feel like I can't take it anymore.  I have horrible panic atacks and stupid arguments with my boyfriend beacuse of my mood swings. 

 

If someone knows a way to get better please tell me, this is the first time in all this years that I feel hopeless. 


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notme Experienced

if you were eating out alot, you were probably getting cross contaminated on a regular basis.  so, maybe you need to go back to eating plainly, cooking/preparing your own meals, no eating at restaurants.  be strict with your diet.  good that you're getting an endoscopy in case there's something else going on.  i hope you feel better.

bartfull Rising Star

I think eating just fruits, veggies, and apple juice might be prolonging the problem. Those will give anyone D if that's all they are eating. Get some chicken or turkey and eat that. Maybe some potatoes.

kareng Grand Master

Are the blood tests they just took positive for Celiac antibodies? That would show you are getting enough gluten to give you a reaction.

blancasagro Newbie

I went to the general dr. and she order me the regular test: CBC with Sed Rate, CMP, THS... because she insists it is something else, like the thyroid or colitis.  I had all the tests until I got an appointment with my gastroenterologist. As soon as he entered the office he told me "you are in pain" because the look in my face and he noticed my weight loss.  Mostly I have been eating fruits and veggies,

I simply swallow the food against my will because I have no appetite at all, and as soon as i start eating I feel weird bowel movement. Some times I need to leave the food without finishing to go straight to the bathroom.  I saw my gastroenterologist like a month ago because of some reflux and stomach pain,we both thought it was gastritis, but because of the weight loss we now  think that I had some hidden gluten.  I don't eat meat, but I ate salmon two days this week, and mostly raw veggies and fruits.. some home made mashed potatoes too. I usually don't eat at restaurants and I know it was my mistake to believe in the gluten-free menus  :angry:  This have been the worst two weeks of my life, I just will like to know when I'm going to get better 

kareng Grand Master

Its just normal Celiac follow-up to blood test every year. I would insist they do that to make sure you aren't having an issue accidentally eating gluten.

 

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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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