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Silent celiac or No?

Natalia.Hillz

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Natalia.Hillz Rookie
Natalia.Hillz
Posted

So I was diagnosed with " Severe Celiacs disease " last year, but I was told nothing was seen in biopsy and I haven't done blood work yet, the only thing that indicated Celiacs was the damage done to my villi.... before I was diagnosed I was very sick I couldn't eat at all, like throwing up, diarrhea, chest pain, neurological problems and headaches, thought I had cancer. 

Ok skip forward, I've been on this gluten free diet since November of last year and decided to go ahead and cheat my diet,  well I've been eating nothing but gluten for over a week and wasn't getting sick but now I'm starting to get chest pain, weird headaches and a little bit of an upset stomach... 

Is it possible I wasn't getting sick because I'm now I silent celiac even tho before symptoms were obvious, or could I have been misdiagnosed? Still haven't done blood work and nothing was in the biopsy,  However my villi is damaged severely,  is more positive I'm sensitive to gluten and the damage of the villi is caused by something else?

Please help me, I'm so frustrated with my body because of all this and even more frustrated I wasn't getting sick before but now I think I am.

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ch88 Collaborator
ch88
Posted

To get a celiac diagnosis a blood test and a biopsy is required. Both require eating gluten for a while before the test. There is no way to tell for sure if you are celiac or not without a proper diagnosis. 

There are huge health risks though if you continue eating wheat and have celiac disease. 

The symptoms of celiac disease can change at different times and get better and worse as the body adjusts.  By the time someone notices symptoms it can mean a lot of damage has already been done to the intestine. 

I am not a doctor, so I can't tell if the damage to your intestine was caused by Celiac disease or not. There are other possibilities. I hope this helps!

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tessa25 Rising Star
tessa25
Posted
44 minutes ago, Natalia.Hillz said:

well I've been eating nothing but gluten for over a week and wasn't getting sick but now I'm starting to get chest pain, weird headaches and a little bit of an upset stomach... 

Silent celiac is when you don't notice a reaction to eating gluten. This quote tells me you do notice a reaction to gluten. So the biopsy showed villi damage, you went gluten free and your symptoms improved, you started eating gluten again and you have symptoms again. Sounds like celiac to me.

Natalia.Hillz Rookie
Natalia.Hillz
Posted
  • Author

Even tho it took almost two weeks to notice something? When I read on severe Celiacs it indicated that I would have noticed within an hour of eating gluten... and I've eaten a ton gluten which makes me think it's a gluten sensitivity 

tessa25 Rising Star
tessa25
Posted

It's not an allergy. It takes time to do damage.

cyclinglady Grand Master
cyclinglady
Posted

I had NO GI symptoms when I was diagnosed.  I presented with anemia.  My biopsies revealed severe intestinal damage.  Not all celiacs have violent gastro reactions to gluten exposures. 

I do not get this.  You were diagnosed with severe celiac disease, but your blood tests (never taken) and biopsies were normal.  You said that you had villi damage.  If the GI saw severe damaged villi, you would think your  biopsies (tissue samples) would have reflected this.  Maybe you should clarify with your doctor and get the GI and pathologist’s reports and review them.  You should also get follow up testing with your GI and maybe a consultation with a dietitian who is celiac-savvy. 

Celiac disease is like a chameleon.  Always changing.  When you cheat, you are not just setting yourself up for intestinal damage, but you can go on to develop other issues.  

Natalia.Hillz Rookie
Natalia.Hillz
Posted
  • Author

Before I was diagnosed I was very sick so yes I had problems but don't now, and idk how there was nothing in the biopsy and I don't know how they jumped to Celiacs,  I've had 2 different doctors in the Same office,  my first one quite and the new one is the one giving me this information, i was told by the first one it was Celiacs and she said " its like you've had Celiacs your whole life " yet It took 21 years for me to get symptoms? They did the endoscopy and colonoscopy because they had no idea what was wrong with me, now the new doctor wants to do blood work because he saw nothing in the biopsy,  so idk if its just him or what but it doesn't help my doctors keep changing on me :(

in a since I feel like this doctor is stupid or something , but I can't really change doctors unless I wanna wait another year, it took at least six months to get into this one

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RMJ Mentor
RMJ
Posted

You were feeling better on the gluten free diet then decided to cheat and now feel worse?   Why not just stay on the gluten free diet?

  • 2 weeks later...
Natalia.Hillz Rookie
Natalia.Hillz
Posted
  • Author
On 8/7/2018 at 12:20 PM, RMJ said:

You were feeling better on the gluten free diet then decided to cheat and now feel worse?   Why not just stay on the gluten free diet?

Because honestly I hate the gluten free diet so much,  its expensive and I can hardly cook,  I love fast food and bread and stuffed crust pizza,  I have alot of problems as it is, like degenerative arthritis and 2 types glaucoma and that's all new within this year, I have bipolar manic depressive disorder and Severe anxiety disorder,  I feel crippled, unwanted, useless and I hate myself more than life itself,  I've literally fallen into the severe depressive state because of all these new diagnoses,  I also know we only live once and some day we will all die, so I feel like there's no point,  I mean I'm still eating gluten and gluten free but I just want to be happy and food I'm not supposed to be eating makes me happy,  in fact that used to be the only thing that made me happy.... idk if anyone else understands but that's why I cheated my diet,  we all die, might as well live,  some people are more miserable than others and I've been miserable my whole, I don't want to keep feeling this way, not being able to afford anything and all the other things I mentioned.  :(

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