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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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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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