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Blood Test Negative

Ems1984

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Ems1984 Rookie
Ems1984
Posted

Hey everyone!

I've been looking into going gluten-free after my mum was told by a naturopath that she cant tolerate gluten. i have a lot of the symptoms of celiacs; mainly gas, bloating and irregular bowel movements.

so i've been gluten free for just over a week and went and got a blood test, got the results back today and it said "unlikely to have coeliacs"

so now im not sure what to do... ive noticed some improvement in my gut since ive restriced my gluten intake. just wondering if anyone else has opted to go gluten-free even if the docs have said they dont have celiacs??

em :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

Hello and welcome to the board. There are folks here that are gluten free without a formal diagnosis. You don't really need a doctors permission to be gluten free.

I wonder with the doctors office saying "unlikely to have coeliacs" what your test results are. Sometimes a low positive will be reported as a negative. Can you get a copy of the results and the tests done and perhaps someone can shed some light on the results. Also very important is that you keep eating gluten until you are done with all testing you desire to do.

Read as much as you can here, there is a lot of info to absorb.

Feel free to ask any question you may need to.

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Ems1984 Rookie
Ems1984
  • Author
Posted
Hello and welcome to the board. There are folks here that are gluten free without a formal diagnosis. You don't really need a doctors permission to be gluten free.

I wonder with the doctors office saying "unlikely to have coeliacs" what your test results are. Sometimes a low positive will be reported as a negative. Can you get a copy of the results and the tests done and perhaps someone can shed some light on the results. Also very important is that you keep eating gluten until you are done with all testing you desire to do.

Read as much as you can here, there is a lot of info to absorb.

Feel free to ask any question you may need to.

Thanks for your reply :)

I have the test results with me...

The only thing it really says is that my total Serum IgA is 0.96 g/l

Can you, or anyone else, explain that a bit to me?

Keeping in mind that when i had the blood test id been gluten free for about 6 six days, would that have affected it much? the doc didnt seem to think so...

Em :)

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Ems1984 Rookie
Ems1984
  • Author
Posted
Hello and welcome to the board. There are folks here that are gluten free without a formal diagnosis. You don't really need a doctors permission to be gluten free.

I wonder with the doctors office saying "unlikely to have coeliacs" what your test results are. Sometimes a low positive will be reported as a negative. Can you get a copy of the results and the tests done and perhaps someone can shed some light on the results. Also very important is that you keep eating gluten until you are done with all testing you desire to do.

Read as much as you can here, there is a lot of info to absorb.

Feel free to ask any question you may need to.

Thanks for your reply :)

I have the test results with me...

The only thing it really says is that my total Serum IgA is 0.96 g/l

Can you, or anyone else, explain that a bit to me?

Keeping in mind that when i had the blood test id been gluten free for about 6 six days, would that have affected it much? the doc didnt seem to think so...

Em :)

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gfb1 Rookie
gfb1
Posted
Thanks for your reply :)

I have the test results with me...

The only thing it really says is that my total Serum IgA is 0.96 g/l

total iga seems to be within the normal range -- if a bit on the low-normal side (numerically). this may or may not have any clinical relevance; so, you need to check out the laboratory-specific ranges for your sex/age. this should be included in the report.

i assume that other things were tested as well..... ????

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debidolphin Newbie
debidolphin
Posted

Hi I am a newby also. I had a blood test done and my FNP called me a said it didn't show celiacs but she wanted me to try a gluten free diet. My symptoms go back 15 yrs or more now that someone connected the dots for me. Had infertility problems, then a miscarriage. 5 yrs later the gallbladder came out due to indigestion, heartburn, abdominal pain. 2 weeks after the gallbladder was removed I started having esophageal spasms. Dxed again with Gerd. Started having severe abd. pain-I truly thought I was dieing and my bowel had ruptured or something. Diarrhea would cure the pain but I couldn't eat for days without it coming back. It was so bad twice that I had some bleeding to go with it. had a colonoscopy and IBS was the dx. Also had 4 EGDs-GERD gastritis,etc. Four years ago I really started feeling bad. Started having extreme fatigue-it didn't matter how much I slept, I was still tired. Along with this went joint and muscle aches and pains. I also had some anxiety and neuro symptoms-numbness and tingling in my foot. I saw 9 doctors and have had every dx from nocturnal asthma to fibromyalgia and several in between. When the FNP suggested celiac disease I thought here we go again. I did the blood work and started reading. The symptoms fit. So I have been trying the diet and do feel better. Less aches and pains and more energy. It's been a week and I sure hope I'm not imagining this. It would be so great to feel better on a permanant basis and so worth the sacrifice of bagels and pizza-lol. Is it too soon to tell if it's the gluten? Could this be a gluten sensitivity? I did eat cadbury mini eggs and thought I was being careful. Had terrible heartburn that night and felt awful the next day. I then found out that they have gluten in them. Please let me know what you think. Thanks Debi

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TearzaRose Explorer
TearzaRose
Posted

I've had the Celiac panel done twice---both times NEGATIVE <_<

BUT, that doesn't prevent me from avoiding gluten at all costs. I know what makes me feel like crap and I know how to avoid it. I don't need someone with a PhD in gastroenterology to tell me to not eat gluten. :rolleyes:

Also, those tests are NOTORIOUSLY unreliable. Even the biopsies if you have an endoscopy or colonoscopy done can come back with negative results if the villi aren't completely decimated!

So, go with your "gut" :lol: and if avoiding gluten makes you feel better and you no longer have the symptoms, then you have your answer.

I actually had an endocopy scheduled, but I'm going to cancel it. I don't need to go through all that to have the medical system tell me what I already know. B)

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samcarter Contributor
samcarter
Posted

My doctor only tested with the EMA test--probably because it's the one that says "yes" or "No' like a Magic 8 Ball, the doofus.

Anyway, he said it was negative for celiac, BUT...i had such a positive response to the dietary change that my husband says he has his wife back. :D I think my third pregnancy triggered the celiac disease, or at least put it into overdrive. With a family history of rheumatoid arthritis, colon cancer, lots of autoimmune issues, it seems that at the very least I'm better off without gluten in my life.

There are people who test negative for celiac through bloodwork, but have positive biopsies. I decided to not bother with a biopsy or further testing, partly because I was leery of not qualifying for insurance (some companies don't like you to have a pre-existing condition like celiac), and honestly, I don't need it. I know how my body reacts to gluten, so I choose not to eat it. If saying i have celiac disease makes people take my issue more seriously--and believe me, it does--I'll say it.

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Ems1984 Rookie
Ems1984
  • Author
Posted
total iga seems to be within the normal range -- if a bit on the low-normal side (numerically). this may or may not have any clinical relevance; so, you need to check out the laboratory-specific ranges for your sex/age. this should be included in the report.

i assume that other things were tested as well..... ????

Thanks for that!!

Here's the specifics of my results

Endomysial antibody - negative

Tissue transglutaminase IgA - 0 U/ml (<7)

Total serum IgA - 0.96 (0.69-3.10)

thats all i can see that relates to the coeliac screeing...

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PeachBlossoms Rookie
PeachBlossoms
Posted

Many ppl in my family tested negative on the Celiac blood test. However, as soon as they started the gluten-free diet, all of their problems went away.

As they say:

"Do it for yourself. Do it for your health. And do it for the animals."

Hmm...Well a vegetarian quote doesn't really fit here, but you get the general idea. ;) GOOD LUCK!!

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Nic Collaborator
Nic
Posted

I am waiting on the results of my Celiac panel right now. My son has celiac and so does my father so I obviously carry the gene. I have some syptoms such as gas, bloating, constipation, and stomach pain after meals. The doctor was questioning why I even wanted to be tested as he thought with my family history and symptoms, going gluten free was the best choice. I insisted on the test and he said, "ok, but if it comes out negative, I still think you should follow a gluten free diet." Even some doctors don't put a lot of stock into the tests.

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gfb1 Rookie
gfb1
Posted
Many ppl in my family tested negative on the Celiac blood test. However, as soon as they started the gluten-free diet, all of their problems went away.

to quote House... yes, again:

"tests lie; symptoms don't"

remember that in order for tissue transglutaminase to be positive; you must have sufficient intestinal damage to increase the level of TTG in the bloodstream and THEN have an immune response (hence, the measurement of iga/igg instead of directly measuring TTG). same with endomysial test. heck; same with gliadin.

imho -- symptoms probably come into play well before the blood test is positive. and given the natural variation in peoples tolerance for symptoms (some are extraordinarily sensitive, others don't even know they have problems...) -- folks end up in the docs office (and get tested) at very different stages of the disease.

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