Weakly Positive-waiting For Doc's Explanation

[Seamuskitty]

Hi! My name is Julie and I recently elimnated gluten and dairy from my diet in order to figure out what was triggering migraines. I got one migraine with aura during the time I was avoiding gluten. I had been getting a couple of migraines a week before that. After a month I decided to see what would happen if I ate a plate of pasta...

I got sick (vomiting, diarrhea and gas) and became itchy all over. I felt like bugs were crawling under my skin. I couldn't sleep until I took a benedryl. The itching repeated for three nights. I kept having to take benedryl or I would just sit up with my eyes wide open all night long.

I went to the doctor a few days later and she suggested a blood test for celiac sprue. I don't remember the exact test. I got back to see her on the 16th. Her nurse called me a week ago and told me that the test showed a "weakly positive" result.

I have also had horrible reactions to maltitol and maltodextrin for my entire life. I am 48 years old. Was infertile. I have Meniere's disease in one ear. I get excema-like rashes on my hands. Over the last 4 years I have had more and more stomach "attacks" but I just thought I had become lactose intolerant. I get hugely bloated and have to lay down and "deflate" so to speak. I curl up in the fetal position until its over. I am tired all the time, I ache everywhere, I can't concentrate and I'm really depressed!

I have done some asking around and now know that the test result was "weakly positive" because I was tested when I was avoiding gluten. It is a positive result, right?

I am figuring that I have Celiac Disease and that my Doctor is going to explain it to me when I go to see her. So I am getting rid of all the wheat products in my house and preparing to "decontaminate".

Does this sound like a typical Celiac story?

(Oh and I really like cats...!)

[Kaycee]

Hi Julie, welcome.

My doctor described me as weakly positive after having my blood tested. He insisted I had coeliac, so my journey began. A bit like you, I was 48 when diagnosed, and I had already eliminated gluten out of my diet for about a month before the blood test. I was trying to figure it out on my own. If you are on a totally gluten free diet while having tests, the longer you have been gluten-free, the harder it is to get a positive result. But before a diagnosis, I was testing myself maybe once a week, and the gluten I had eaten made me feel ill, probably all the things you describe apart from the vomiting and migraine.

I like the way you described, laying down to deflate. That is me as well.

Weakly positive for me was a positive, both for the way I feel without gluten, and the way I feel so sick with gluten. If I had been eating gluten (more than once a week) in the month before testing, I am sure my total count would've been higher.

I think if you feel so much better gluten free, there is no way you can ignore the weakly positive label. In any case whether weakly positive or very positive the diet is the same.

Good luck.

[TrillumHunter]

It's positive. You don't have degrees of celiac, you just have it or you don't.

So, WELCOME TO THE CLUB! It sounds like you've already seen the positive impact avoiding gluten can have on your life. As you heal and adapt to the diet change, you'll be surprised at the issues that will clear up. You'll have lots of questions and times when it seems too difficult. Come back here as this board is a great resource and was a lifesaver for me after over a decade of illness.

Best wishes for your good health!

[Seamuskitty]

Thanks Kaycee & Trillumhunter,

Its good to know that someone else had a similar experience. I do feel better than I did when I was eating wheat products but I really still feel horrible at this point. I don't know if I am having withdrawal or if I am still consuming gluten and don't know it. The only time I feel good is when I don't eat anything at all! That won't work for long! Everyone needs to eat.

As strange as it sounds, I have had the odd feeling that I have been unknowingly poisoning myself for my whole life! There is so much to eliminate & I am very angry that I am just figuring this out. I am particularly pissed off that this may have caused my infertility. I tried everything to get pregnant. I had two miscarriages in my thirties. I had terrible "female problems" since I was a kid but despite numerous surgeries to try to figure out what what wrong, doctors never found a problem with me structurally. Thinking that my infertility may have been caused by eating gluten is more than my little psyche can handle! I haven't done enough research to know how clear the connection between Celiac and infertility is...so I haven't totally freaked out.

As for the Meniere's disease, I have also read that it is auto-immune and is somehow connected to Celiac, again I am just beginning to research this. But I have lost nearly all my hearing in my left ear, have constant tinnitis and have had to have gentimicin injections into my eardrum to destroy the balance function in order to stop constant vertigo...

What do people know about the connection between Celiac and the incidence of infertility and of Meniere's disease? If there are already threads about this, point me in the right direction and I will read.

Thanks!!

Hi Julie, welcome.

My doctor described me as weakly positive after having my blood tested. He insisted I had coeliac, so my journey began. A bit like you, I was 48 when diagnosed, and I had already eliminated gluten out of my diet for about a month before the blood test. I was trying to figure it out on my own. If you are on a totally gluten free diet while having tests, the longer you have been gluten-free, the harder it is to get a positive result. But before a diagnosis, I was testing myself maybe once a week, and the gluten I had eaten made me feel ill, probably all the things you describe apart from the vomiting and migraine.

I like the way you described, laying down to deflate. That is me as well.

Weakly positive for me was a positive, both for the way I feel without gluten, and the way I feel so sick with gluten. If I had been eating gluten (more than once a week) in the month before testing, I am sure my total count would've been higher.

I think if you feel so much better gluten free, there is no way you can ignore the weakly positive label. In any case whether weakly positive or very positive the diet is the same.

Good luck.

[Seamuskitty]

Hi everyone!

I saw the doc today and was given my test results. The doctor admitted this was the first time she had ever asked for this test and was clearly interpreting them on the fly....

At first she said "You have Celiac Sprue!" then later on she said she wanted to send me to a gastroenterologist for a definitive diagnosis and more resources...???!!!

Anyway here are the results of the Celiac Disease Comprehensive blood test. I have copied it word for word & don't know what is just interpretation info. I have bolded the part that was bold on the paper.

Diamidated Gliadin Abs, IgA 6.8

Deamidated Gliadin Abs. IgG 8.8

t-Transglutaminase (tTG) IgA 6 High

Negative 0-3

Weak Positive 4-10

Positive >10

Tissue Transglutaminase (tTG) has been identified as the endoysial antigen. Studies have demonstrated that enomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

t-Transglutaminase (tTG) IgG 2

Negative 0-5

Weak Positive 6-9

Positive >9

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 254

I have stared at it for a while and figure it just means I have Celiac Disease. So why do you think the Doctor wants to refer me to a gastroenterologist?

Should I say no? And just proceed without seeing another doc?

[Lisa]

. So why do you think the Doctor wants to refer me to a gastroenterologist?

Should I say no? And just proceed without seeing another doc?

Because she's not confident in her own diagnosis. With a history of intestinal issues, it's always good to have a base test and to check for other possible issues, imho.

[TrillumHunter]

I agree with Momma Goose. She seems pretty unfamiliar with celiac. GI's typically manage celiac patients as it is a gi disease---that affects your whole body!

If you decide to see a gi, I would recommend getting in touch with a local group to find the most celiac friendly dr. Otherwise, you could just be wasting your time.

[Seamuskitty]

I am having serious problems with the idea of making myself sick in order to do a biopsy.

I think I am probably not alone in having this kind of visceral reaction against the idea that I have to eat gluten for a certain amount of time in order to test positive on the biopsy. It is counter-intuitive.

I know I have to do it in order to get a definitive diagnosis. But why is this the only way to get it?

This stinks.

[ravenwoodglass]

I am having serious problems with the idea of making myself sick in order to do a biopsy.

I think I am probably not alone in having this kind of visceral reaction against the idea that I have to eat gluten for a certain amount of time in order to test positive on the biopsy. It is counter-intuitive.

I know I have to do it in order to get a definitive diagnosis. But why is this the only way to get it?

This stinks.

While doing a lengthy challenge and making yourself sick enough to get a positive biospy, assuming you don't have a false negative one, which does happen, is the 'gold standard' for a diagnosis if you are firmly against this process you do have the option of going gluten free based on your positive blood work and seeing if the diet helps.