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No Celiac


razzle51

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razzle51 Apprentice

well after trail and error and 2 more test I do not have celiac ... yipppeeeeeeeeeeee


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GFreeMO Proficient

Ya know...I may get in trouble here for this but that is one of the rudest comments that I have ever read on here. Glad that you don't have celiac but the rest of us here do. I am currently glutened and feeling like crap so nice way to rub it in.....good going!!

kareng Grand Master

You know, Mo....I sort of thought that at first, too.

But then I thought....We always want to know what the results are with the people we help on here....maybe he/she just thought we would like to know that. And, who among us wouldn't like to not have Celiac?

Of course, Celiac is a definitive answer for why someone feels ill. Now this poor person has no idea why he is having the issues he has. Maybe he is NCGI? Maybe he has a parasitic infection? Maybe cancer? Maybe Chrohn's? Worse things than Celiac.

So to Razzle51 - I'm sorry that the doctors have not found out what is causing your medical issues. I hope they continue to search for the problem and find a good solution for you and you return to good health soon.

nvsmom Community Regular

Congratulations! :) I hope you figure out soon, and consider non-celiac gluten sensitivity if you continue to have problems.

Adalaide Mentor

I'm not sure what to say exactly. There is nothing quite like being deathly ill and having all the tests say you are in perfect health. What tests did they do precisely?

GFreeMO Proficient

True..true...So sorry, I hope that you feel better soon and get to the root of your health issues.

Celiac Mindwarp Community Regular

I am delighted for you. Be sure to hang around and ask questions if you think gluten-free might help. I have a diagnosis of NCGI and feel way better on a gluten-free diet. I hope you get to the bottom of things.

Good luck


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kristenloeh Community Regular

Yeah, I was actually happy to be diagnosed with Celiac because I at least knew what the problem was FINALLY after 10+ years of suffering and could get on the track of feeling better. Sorry you don't have the answer yet.

IrishHeart Veteran

well, I was going to say pretty much what Karen said, so I'll just say

"what karen said"

and since I went most of my life not knowing why I felt so bad, had horrible symptoms progress in the last 10 years and pretty much was ready to die, I am one of the few people who said :

"I have Celiac! Hot damn! whoohoo!"

because I knew I had an answer and I could get well.

And, I have to add this cautionary note: sometimes, despite the negative testing results, if it walks like a duck and acts like a duck.....

(my celiac blood panel was negative and that set me up for 2 more years of living hell)

It may not be celiac, but the gluten intolerance spectrum is pretty wide.

Adalaide Mentor

well, I was going to say pretty much what Karen said, so I'll just say

"what karen said"

and since I went most of my life not knowing why I felt so bad, had horrible symptoms progress in the last 10 years and pretty much was ready to die, I am one of the few people who said :

"I have Celiac! Hot damn! whoohoo!"

because I knew I had an answer and I could get well.

And, I have to add this cautionary note: sometimes, despite the negative testing results, if it walks like a duck and acts like a duck.....

(my celiac blood panel was negative and that set me up for 2 more years of living hell)

It may not be celiac, but the gluten intolerance spectrum is pretty wide.

That is sort of why I asked what tests were done. Sometimes a duck is a duck is a duck. I don't care if the tests tell you a duck isn't a duck, if a duck is staring you in the eyes, it doesn't matter what a piece of paper says. You would be a moron to say, hey, that ain't no duck!

ETA: Also, once I got my head out of my ever too ample backside, I was thrilled to have an answer. I was thrilled to not have to be on a half dozen drugs with 4 dozen side effects worse than how sick I already was. All I had to do was stop eating gluten. Simple. (Bwahahaha!)

1desperateladysaved Proficient

I was relieved to find I had celiac. I liked having an explanation for 30 years of fatigue and a way out. Yeah, I would have been glad if I didn't have to follow the diet, but I would be back to square one of what to do next. I just hope that you Razzle51 will find the keys to your health struggle and be able to do something about it.

Diana

VeggieGal Contributor

I think I was more scared of getting a negative/borderline diagnosis because theres nothing worse than not knowing for sure, especially with all these false negatives people get which I keep reading about. At least with a dx of celiac or if you've worked out you're a NCGI then you've got something you can deal with.

I'm still new to all this but hope you find out whats causing your symptoms Razzle...may even be worth going gluten free for a while to see if things improve or try an elimination diet (I'm sure you"ll find loads of info on here on how to go about it).

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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
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