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Got Test Results- Need A "hug"

Guest BERNESES

By Guest BERNESES
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest BERNESES
Guest BERNESES
Posted

Hi Everyone- This board has been so helpful to me in so many ways since I was told by my primary care doctor that I may have Celiac's. I have had multiple blood tests (including the test for Celiac's which showed a weak positive) a CT scan and an upper GI/ small intestine biopsy. I got the results today- technically, I don't have Celiac's.

However, I had been gluten-free for 9 weeks before the test and was starting to feel much, much, much better in so amny ways. Many of my symptoms resolved, but I ate gluten for 10 days before the test and was sick as a dog- all my old symptoms retturned- even some little ones that I hadn't even noticed as being related to the wheat. According to the doctor, it may have been "mind over matter" although I'm not quite sure exactly how I could conjure up all the things that happened to me ;) I'd have to be a magician.

I said before the biopsy that I didn't need a definitive diagnosis to know that I can't eat gluten, but just when I was starting to feel better after ten days of hell, I accidentally "glutened" myself on Monday and wound up in the ER room last night with all my symptoms back in a fury. I seriously felt like I was going to DIE. They, of course, ran tons of tests, none of which showed anything except constipation (my bowels are quite backed up). I KNOW this is gluten but that was the worst experience I've ever had. I just need some cheerleading right now while I get this stuff out of my system. I feel a little better today but not much. Thanks everyone, Beverly

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Canadian Karen Community Regular
Canadian Karen
Posted

Hi Beverly,

I think the fact that you have had such a positive response to the gluten free diet would be enough for me to accept the fact that I have Celiac Disease. Remember, when they do biopsies, they take biopsies from various sections but that does not guarantee that if there is damage, they are going to hit the right spots. From what I have read here, there are lots of times a biopsy does not show the damage because damage tends to be sporatic.

I would certainly keep on the gluten free diet. At the very least, even if it not celiac, you could have just an "allergy" to wheat without actually having celiac, which in that case the gluten free diet would be the way to go anyway...... Maybe trying an elimination diet would help you pinpoint which allergy you suffer from......

Sending you cyber hugs to help you get through this and give some support.......

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

Just because a biopsy shows no damage does not mean you do not have celiac. You may not have damage at this point or you could have sporadic damage and they got a sample from a section that was not damaged. Obviously you have a problem with gluten...my guess is you are either gluten intolerant or celiac. Listen to your body though..it knows best. What blood tests did you have done for celiac? Some are very specific so if they were elevated there has to be something going on.

Guest gliX
Guest gliX
Posted

Also, if you had a virus during the bioscopy (doesn't have to mean you're sick or feel any symptoms from being sick), then the test wouldn't have shown the right results.

Guest BERNESES
Guest BERNESES
Posted

Thanks Everyone- I know that I have Celiac's, I guess I just have to give up on waiting for a doctor to agree. I had pretty much made peace with it after getting such a positive response from the gluten-free diet and the ONLY reason that I even did the biopsy was to hope I'd get a more definitive answer because I know it's genetic and I'm adopted so I wanted to know for the purpose of my own children's sake when I have them. But, now I at least know what to look for in a baby as well thanks to this board and the research I have done.

I had all the blood tests done except for the gene and it was either my IgG or IgA that was a weak positive. It was about a 23 with over 20 being considered a weak positive.

Thank you all for responding. Last night was really scary- it really was the sickest I've ever felt in my entire life. Health to all, Beverly

bigapplekathleen Contributor
bigapplekathleen
Posted

HI Beverly,

I am so sorry to hear how sick you are. Have you ever had the genetic test for Celiac Disease? That will give you pretty accurate results even if you're on a gluten-free diet. (95-97% of Celiac patients have the gene, perhaps even higher percentage according to latest studies.)

I see one of the top celiac docs in the world, but know now that I don't have celiac disease. I do, however, have non-celiac gluten intolerance, which means I don't have the gene for celiac, but I do get a lot of symptoms when I consume gluten.

Is it possible that you are gluten intolerant but not celiac? Does your doc know about this possibility? There are other diseases, also, that can get better on a gluten-free diet.

I have hit the point now, though, where I have pretty much given up on doctors' diagnoses - even these top docs - because they are always just looking for more sickness, rather than concentrating on wellness. I know I feel well when I follow a pretty strict PALEO diet and when I don't eat the same foods every day (I am aiming for a 4-day rotation of all foods).

I wish you the best in your recovery...

kathleen

Guest BERNESES
Guest BERNESES
Posted

Thanks kathleen- I pretty much know what makes me feel better and it is not eating gluten. I've never had the gene test but I am considering it. Either way- if I have Celiac's or am gluten intolerant- I'm staying away from gluten FOREVER! By the way, what is the PALEO diet with a four day rotation. Thanks for all your support, Beverly

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FaithInScienceToo Contributor
FaithInScienceToo
Posted

Beverly -

Just wanted to add my message of support -

MAINLY...keep on listening to your body.

I think you should, though, get the gene testing done, to be know if you can actually have 'Celiac disease,' because without one of the two ID'd genes, you cannot have 'celiac'...

...but also know that even if you don't have one of the 2 genes, gluten-intolerance can still cause great bodily distress, and being gluten-intolerant isn't 'less disconcerting' than having celiac disease...some people who are celiacs are less sick then some people who are severely gluten-intolerant...there is a wide range of variability in both 'illnesses'...having one does not trump the other, or qualify a person for more empathy...

I would bet that severe gluten-intolerance alone will one day be linked to many serious disorders, just like celiac diesase is...

Enterolab offers testing for both gluten intolerance and genetic testing (via cheek swabs)...I would recommend that you get those tests...but, you don't 'need' to...If you do, however, it will give you more scientific info about your body to have on hand, to be able to help you understand both current and future research findings/reports...

Only you know how you feel, though, and only you can do for you what you need to do to feel your best and protect your health.

Best wishes for improved health to you, Gina

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