Biocard Test - Feeling Frustrated!

[LALady]

Hello!

I am new to this, so please bear with me and my long post....

I have long suffered reactions of IBS type symptoms beginning when I was in third grade (I am now 26). In high school, I was eventually diagnosed with "colonic inertia" which my Dr. said was like IBS, but not truly it. I was put on medicine for gout as its side effect is loose stool. For many years my problem was mainly constipation, but as I got older, it became either chronic constipation, or chronic diarrhea. The older I got, the worse the latter, and as I am sure all of you sufferers have been through, the deposits are not pretty, and my stool fits all the descriptions associated with celiac I have read. It got exceptionally bad after a traumatic event, which I once read could be a catalyst for celiac to really break through.

I have many other symptoms as well. They are as follows:

Hypothyroid (diagnosed 6 years ago and take synthroid to balance)

Asthma

Migraines

Extremely fatigued

Anxiety (I have all this pent up energy in my body, but yet am too tired to do anything to release it)

Insomnia

Joint and muscle pain (I have constant aches for no reason)

Nausea

Vomiting (I often get a wave of nausea and vomit for no particular reason. I feel ok afterwards)

Horrible gas and bloating

Chronic dry mouth (to the point where I flip out if I do not have water. I drink about a bottle every half hour, go to bed with 2 glasses and get up at least once during the night to refill)

I could probably go on but I often feel as if I am complaining about nothing, and these symptoms are in my head. After several friends suggested I had celiac, I did a ton of research and went gluten-free for a month. I felt fantastic! My skin also greatly improved, and since going back on gluten as gotten much worse. But, going gluten free is hard (especially when dining out), and I am someone that needs proof. I work freelance so do not have insurance, and after 2 weeks of glutenning myself (after the gluten free month) I took a Biocard Home Test. It came up negative, and now I feel as if I am making all of this up! I don't know if I should continue to eat gluten, suck it up for the costs and see a doctor (it's been rough in my business lately so finances are an issue), if the Biocard test could have rendered a false negative, or if I do not have this. I feel like I do feel so much better when not eating gluten, but it is such a life changing thing that I do want proof, though I feel pretty miserable while eating gluten now. I really thought the Biocard was going to be positive, and the negative result really through me for a loop. I am so sorry for this long post, but I don't know where to turn and any help would be so wonderfully appreciated.

Thank you in advance!

[ravenwoodglass]

The best 'proof' of all is in my opinion in this quote from your post

"I felt fantastic! My skin also greatly improved, and since going back on gluten as gotten much worse. But, going gluten free is hard (especially when dining out), and I am someone that needs proof. "

You could go to Enterolab for testing or continue to eat gluten for another month or two and then go to a GI doctor for testing of blood and endoscopy, although both those tests have higher than we would like false negatives.

What are the skin problems that you refer to? Some of us have the skin form of celiac, called dermatitis herpeformis. A knowledgeable dermatologist could check for that by biopsing the area next to an active lesion.

In the end your own body IMHO is giving you the answer.

[LALady]

The best 'proof' of all is in my opinion in this quote from your post

"I felt fantastic! My skin also greatly improved, and since going back on gluten as gotten much worse. But, going gluten free is hard (especially when dining out), and I am someone that needs proof. "

You could go to Enterolab for testing or continue to eat gluten for another month or two and then go to a GI doctor for testing of blood and endoscopy, although both those tests have higher than we would like false negatives.

What are the skin problems that you refer to? Some of us have the skin form of celiac, called dermatitis herpeformis. A knowledgeable dermatologist could check for that by biopsing the area next to an active lesion.

In the end your own body IMHO is giving you the answer.

Thanks so much for the post, I greatly appreciate the information and the support! I am checking out doctors now, so we will see, but I am trying to learn to trust my body's answers!

[nora-n]

Hi, going gluten free for a month really could have caused the negative test. four weeks back on gluten are just not enough either, the least I read is six weeks, could be three months or six months or more.

Another thing, if you have low total IgA, the tests are gonna be negative regardless. even the Enterolab test for the antibodies, but not the fecal fat malabsorption or gene tests. Just any IgA based test will be falsely negative.

[LALady]

Hi, going gluten free for a month really could have caused the negative test. four weeks back on gluten are just not enough either, the least I read is six weeks, could be three months or six months or more.

Another thing, if you have low total IgA, the tests are gonna be negative regardless. even the Enterolab test for the antibodies, but not the fecal fat malabsorption or gene tests. Just any IgA based test will be falsely negative.

Thanks so much for your help, I appreciate it! I thought perhaps I had not been back on gluten long enough, but hadn't been off of it that long so was unsure. I am looking into doctors so hopefully by the time I go I will have been back on long enough. Thanks again!

[CeliacPrincess412]

Hi,

I completely understand your frustration, but I'm concerned that your test may have come out inaccurate because you were not eating gluten for long enough before taking it. After your gluten-free trial, you would need to spend quite a bit more time eating gluten in order to get an accurate result, even with the Biocard test kit. The Canadian Celiac Association suggests consuming the equivalent of 1 to 4 slices of bread daily for at least 4 weeks before having a celiac test done, so there's a good chance you didn't get enough in your system to have the test come back correctly. I would try again.

Best of luck!

[Ahorsesoul]

LALady,

You already have the proof you need. You are intelligent and resourceful enough to decide if you need to be gluten free without spending a ton of money on tests that can and do show false positives. It is not all in your head. Trust yourself. Keep a food diary if you need written proof.

[LALady]

Hi,

I completely understand your frustration, but I'm concerned that your test may have come out inaccurate because you were not eating gluten for long enough before taking it. After your gluten-free trial, you would need to spend quite a bit more time eating gluten in order to get an accurate result, even with the Biocard test kit. The Canadian Celiac Association suggests consuming the equivalent of 1 to 4 slices of bread daily for at least 4 weeks before having a celiac test done, so there's a good chance you didn't get enough in your system to have the test come back correctly. I would try again.

Best of luck!

Thanks for the information from the Canadian Association, I greatly appreciate, and agree that I did not have enough back in my system!

[LALady]

LALady,

You already have the proof you need. You are intelligent and resourceful enough to decide if you need to be gluten free without spending a ton of money on tests that can and do show false positives. It is not all in your head. Trust yourself. Keep a food diary if you need written proof.

Thank you for that reminder, it is definitely something I needed to hear! I do know how bad I feel, and I do know that I have this - I have to. I am going to start keeping a food diary as well, and the more gluten I eat, the more my symptoms come back and in greater force than before I went gluten-free. Thanks for the support, I greatly appreciate it, and the longer this goes on the more and more I am trusting myself, especially after seeing the difference when being gluten free!