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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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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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