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Test Results Are In From Biopsy

Rae

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Rae Apprentice
Rae
Posted

Hey everyone - need some support here

My GI doctor just called me and told me that my biopsy was normal and I tested negative for celiac disease (my blood results were positive). She said everything was normal and that I was ok. Though this may sound comforting, it wasnt for me. Yes, I thank God that nothing is seriously wrong with me, but I am upset b/c it makes me feel that everything I am feeling is all in my head (as i was told by one GI doc). Before the biopsy I insisted to the GI doc that I do a gluten challenge and she said it wasn't necessary- I wish I would of. Could I still possible have celiac? Or could it be a gluten intolerance? I've been following a gluten-free diet for 3 months and I guess I feel somewhat better (better than before), but now I do not know what to do. I am scared to return to a normal diet b/c I do have reactions when I eat something that could even be cross contaminated w/ gluten. I eliminated dairy from my diet too, and I know I have a low tolerance for chocolate. A little of topic but while I am here posting, could I be intolerant to starch, like starchy carbs?

Anyways I just needed to vent and ask your advice as to Where do I go from here?

Thanks for always listening-renee

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Jnkmnky Collaborator
Jnkmnky
Posted

I was neg for celiac disease and all sensitivities. Which lab did your tests? Some are better than others. I was dealing with Endometriosis and put on a regimine of motrin and vicodin for the pain. I took the prescriptions and went gluten free that minute. All of my pain went away. I've since tested my theory, and was proven right. Gluten is causing me pain. I'm not interested in any tests. I don't need a prescription for gluten-free food. I'm 100% recovered from something that had me on the floor writhing in agony. So, doctors don't know everything. Eat what you like-eat what your body likes.

Carriefaith Enthusiast
Carriefaith
Posted
I've been following a gluten-free diet for 3 months and I guess I feel somewhat better (better than before), but now I do not know what to do.
Were you gluten free during the test? Going gluten free before testing can result in false negative test results. Maybe your test were false negative?

If the diet makes you feel better, then you may have celiac disease, a gluten sensitivity or a gluten intolerance.

Judyin Philly Enthusiast
Judyin Philly
Posted
Hey everyone - need some support here

My GI doctor just called me and told me that my biopsy was normal and I tested negative for celiac disease (my blood results were positive). She said everything was normal and that I was ok. Though this may sound comforting, it wasnt for me. Yes, I thank God that nothing is seriously wrong with me, but I am upset b/c it makes me feel that everything I am feeling is all in my head (as i was told by one GI doc). Before the biopsy I insisted to the GI doc that I do a gluten challenge and she said it wasn't necessary- I wish I would of. Could I still possible have celiac? Or could it be a gluten intolerance? I've been following a gluten-free diet for 3 months and I guess I feel somewhat better (better than before), but now I do not know what to do. I am scared to return to a normal diet b/c I do have reactions when I eat something that could even be cross contaminated w/ gluten. I eliminated dairy from my diet too, and I know I have a low tolerance for chocolate. A little of topic but while I am here posting, could I be intolerant to starch, like starchy carbs?

Anyways I just needed to vent and ask your advice as to Where do I go from here?

Thanks for always listening-renee

Renee--

Wish you could go to my GI Dr.

I feel so bad for you...you must feel really lousy & confused right about now.

Reason I wanted to write was this....all my tests came back 'inconclusive' becasue they didn't do the main one even tho it was on the list to do'. My Internist ordered celiac disease panel after 5 weeks of water D that kept me home bound...and GAINED 16 POUNDS and was so nausous (?) couldn't eat anything...

I hadn't seen my GI in 5 years...My internist for 3 years......just dealt with the pain and explosive D daily...Ok this is why I'm writing...

When my GI said he'd do a total celiac panel and gene test I said 'some Dr's say to do a gluten challange and re do the test....He went crazy...grinding his teeth and shaking his head and said....JUDY, IF I LIGHT A CANDLE AND WE SEE A FLAME, DO YOU HAVE TO PUT YOUR FINGER IN THE FLAME TO SEE IF IT WILL BURN YOU??????? I love this man....He said if your gluten-free diet has taken all your symptoms away, why would you ever want to eat it again....He's doing the test to see if the numbers come down...and show the gluten-free had worked....

Please don't give up...keep listening to your body and find a Dr who will give you the support YOU NEED.

You aren't crazy, your hurting and looking for answers.

I'll keep you in my thoughts and prayers.

Judyin Philly

Guest nini
Guest nini
Posted

you said your blood test was positive, right? then yes, you have it... forget about the biopsy results, especially if you were already gluten free even for just one week before the biopsy. Your results can def. be skewed if your body had already begun to heal, or the dr. took samples from areas not damaged.

if the diet makes you feel better, by all means stick to it. YOU DO NOT NEED A DR'S PERMISSION TO GO GLUTEN FREE. Your blood tests are enough to indicate that you do have Celiac. That's all I ever had was the blood work. My GI was awesome with me too. Rather than do unnecessary tests, he did the most specific blood panel first while I was still consuming lots of gluten and I had very high positives on the blood test. We discussed it and I felt that the biopsy would only confirm damage. Well, I knew how I felt and to me THAT confirmed damage. Listen to your body. The biopsy cannot EVER rule Celiac out. It can only confirm it. Any Dr. that is telling you this isn't so, is still operating under outdated information. All the current medical research has proven that the specific blood panel is sufficient to dx celiac and the Positive Dietary Response is confirmation.

Carriefaith Enthusiast
Carriefaith
Posted
you said your blood test was positive, right? then yes, you have it... forget about the biopsy results, especially if you were already gluten free even for just one week before the biopsy.
I agree with nini, I must have missed the part that said that you has positive bloodwork. You probably had a negative result on the biopsy becasue you were gluten free. I would say that you probably have celiac disease. If you need more proof, maybe get a gene test done? You can be gluten free for a gene test.
jerseyangel Proficient
jerseyangel
Posted

Renee--Unless I'm missing something, if your blood tests were positive that tells me right there that you should be off gluten. The biopsy being neg. can't rule out Celiac--especially with the pos. blood work. Did you tell the Dr. about the positive response to the gluten-free diet? The diet chalenge in and of itself can be used to DX Celiac. I agree with everyone--listen to your body! :)

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KaitiUSA Enthusiast
KaitiUSA
Posted

Were you gluten free at the time of the biopsy? You need to be on gluten for a good 3 months before testing. Also, a biopsy can ONLY rule celiac in...it can't rule it out..if blood tests were positive you likely have it. Which blood tests were positive?

traveljunkie Rookie
traveljunkie
Posted

Hi Rae,

I tested negative to intestinal damage as well, but tested positive for gluten intolerance. Since going gluten free a lot of my health issues have disappeared. So, it's obvious my body does not tolerate gluten. I have become sensitive to other foods, but I believe I can reintroduce these foods with time, and healing! :) I don't want to risk causing damage to my body by eating gluten. With a positive blood test, I would take the gluten-free diet seriously! Good luck!

Charlene

Kailynsmom Apprentice
Kailynsmom
Posted

All of Kailyn's tests (blood and biopsy) came back negative for celiac disease. Within a week of gluten-free diet, she was showing improvement. Now almost 6 months later, she's gaining weight and doing amazing! Her GI dr said once it's been 6 months and she's still doing well gluten-free he'll give her official "celiac disease" diagnosis.

As he told me- it is possible to miss something in the biopsy.Apparently, because they took almost double the amount of samples than normal- and still missed it!

Don't give up. Unless you need the official diagnosis for insurance, etc just stay gluten-free and enjoy life!

Guest nini
Guest nini
Posted
Don't give up. Unless you need the official diagnosis for insurance, etc just stay gluten-free and enjoy life!

trust me, you DO NOT want a dx of Celiac on your permanent record because you can be denied Insurance coverage. It happened to me. I had to fight it and the insurance companies STILL refused to cover me. So I had to go with a group policy where they didn't look at pre-existing health conditions. Despite the fact that with the Celiac dx and on the diet I am healthier than ever... so...

I'm not the only person this has happened to.

Go gluten free, it's NOT in your head, trust us on that one.

Judyin Philly Enthusiast
Judyin Philly
Posted

trust me, you DO NOT want a dx of Celiac on your permanent record because you can be denied Insurance coverage. It happened to me. I had to fight it and the insurance companies STILL refused to cover me.

NINI

This is so scare to me.

Did they stop coverage after the dx with the same insurance co that you had....???

Judyin Philly

WOOPS meant SCAREY!!!!!!

Guest nini
Guest nini
Posted

no, the insurance I had didn't drop me, but I was forced to find new insurance about a year after my dx. (my employer no longer carried health insurance as a benefit) and every company I checked into denied me coverage because of the Celiac dx. I was able to go back to the company that my boss had used (Blue Cross Blue Shield) and they were able to work out a group plan for my family that didn't require me to answer any health questions and since they already knew my history and could see that I was a lower risk after dx than before, so we went with them. The unfortunate part is that my deductible is now outrageous and my co pay tripled... but at least I'm insured.

jen3899 Apprentice
jen3899
Posted

I do not know if anyone else has tried to get medicaid, but I was able to get Medicaid disability, I live in Wisconsin, and it took over 9 months for the state to decide im disabled, but my only problem is the celiac disease. I have been unable to work since I got sick, and still cant. I get so tired when I eat and have no energy if I dont so its kind of a lose lose... so being real tired all the time on top of the D on a semi-regular basis makes it real hard to find a job. I dont know anyone elses situation but maybe this can help someone.

-Jennifer

CMCM Rising Star
CMCM
Posted
I do not know if anyone else has tried to get medicaid, but I was able to get Medicaid disability, I live in Wisconsin, and it took over 9 months for the state to decide im disabled, but my only problem is the celiac disease. I have been unable to work since I got sick, and still cant. I get so tired when I eat and have no energy if I dont so its kind of a lose lose... so being real tired all the time on top of the D on a semi-regular basis makes it real hard to find a job. I dont know anyone elses situation but maybe this can help someone.

-Jennifer

This is really outrageous, that insurance co's would make a stink about a dx of celiac disease!!! I've never heard of that before, but now I'm having second thoughts about testing my 19 year old son. He had met his deductible this year and I was going to get the test since it wouldn't cost much at this point, but maybe I won't. If I decide to test him, I'll go thru something independent of his medical records. I've got an Enterolab test on order for myself, so I guess I'll do that first, and if I definitely have it then I'll get him tested. Insurance companies are disgusting, all they want is for you to pay your premiums but never get tested, never go to the doctor, never get any prescriptions, etc. Don't get me started on insurance companies!!! :angry:

Guest nini
Guest nini
Posted

I'm so fed up with insurance companies... I could EASILY go off on a rant about them but I won't.

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