Just Patting Myself On The Back

[ChristineSelhi]

Hi Everyone,

I posted over a year and a half ago about possibly being a false negative for celiac disease. After a number of cross-contaminations that left me out of commission for a few days each, I have decided to take matters into my own hands.

I am nearly certain that I have celiac disease, and also frustrated with the distinction between celiac and gluten intolerance, since it seems that many people in this forum have symptoms as debilitating as those who have the official diagnosis of celiac disease. I also just don't believe that doctors understand this well enough to know if their methods of diagnosing are accurate.

I was never offered a blood test before I stopped eating gluten, and I was never willing to take the gluten challenge, so they did a biopsy of my small intestine and a DNA test. The biopsy looking for flattened celia was somewhat useless, since I had not been eating gluten for some time, and The DNA test came back as non-celiac. I posted on here wondering if there was anyone I still could have been a false negative, since my symptoms when glutened (bowel movement problems which I won't detail here, IBS, vitamin deficiencies, brain fog, etc) all point to celiac disease.

I know it shouldn't matter, but it does matter to me, because sometimes it makes me feel crazy when people treat this as a food fad when I tell them what I can and cannot eat. Some people can be very mean about it.

So, I called the doctor who did the DNA test to get my exact results. I hope this will lead to more clarity. I can't believe it took me a year and a half after that first posting to do so. I was just kind of proud of myself for finally asking.

Sometimes it's the little things....

[lynnelise]

Honestly if it's someone you don't know very well and they are the type that won't take "gluten intolerance" seriously just tell them you have celiac. They don't need to know your medical history. If you have all the symptoms and quitting gluten makes those symptoms go away then I say you have your answer.

"If it walks like a duck, quacks like a duck, looks like a duck, it must be a duck!"

[notme]

do you feel better on a gluten-free diet? i know what you mean about having a diagnosis. it's like putting the lid on the box... but..... if you feel better, then stand your ground. someone else said on this forum "nobody ever died from not eating wheat" also it's none of their business if you choose to feel better!

[VioletBlue]

The DNA tests are, um, interesting. I believe there is a lot that is not understoodd about Celiac Disease, Gluten Intolerance and the differences between the two. And that includes in the realm of DNA. Also the results of the DNA depend on whether a doctor sticks to a strict interpretation of what a "celiac gene" is. The understand of which is which and how much it matters is changing and evolving.

My suggestion would be to find out which genes the test found and start googling the specific genes for yourself to see what kind of information comes up. You will find more current information on the web about DNA than exists in your doctors head.

And BRAVO for asking!

Hi Everyone,

I posted over a year and a half ago about possibly being a false negative for celiac disease. After a number of cross-contaminations that left me out of commission for a few days each, I have decided to take matters into my own hands.

I am nearly certain that I have celiac disease, and also frustrated with the distinction between celiac and gluten intolerance, since it seems that many people in this forum have symptoms as debilitating as those who have the official diagnosis of celiac disease. I also just don't believe that doctors understand this well enough to know if their methods of diagnosing are accurate.

I was never offered a blood test before I stopped eating gluten, and I was never willing to take the gluten challenge, so they did a biopsy of my small intestine and a DNA test. The biopsy looking for flattened celia was somewhat useless, since I had not been eating gluten for some time, and The DNA test came back as non-celiac. I posted on here wondering if there was anyone I still could have been a false negative, since my symptoms when glutened (bowel movement problems which I won't detail here, IBS, vitamin deficiencies, brain fog, etc) all point to celiac disease.

I know it shouldn't matter, but it does matter to me, because sometimes it makes me feel crazy when people treat this as a food fad when I tell them what I can and cannot eat. Some people can be very mean about it.

So, I called the doctor who did the DNA test to get my exact results. I hope this will lead to more clarity. I can't believe it took me a year and a half after that first posting to do so. I was just kind of proud of myself for finally asking.

Sometimes it's the little things....

[ChristineSelhi]

Hey everyone, thanks for the support. It's tough out there, and I am very happy to have found celiac.com to go to when I am feeling frustrated or confused. I have an innate desire to understand things, especially when they effect my life so much. Anyway, I await the mail, and then I can make my own judgement of how I feel about how I present it to the "general public." At the behest of my doctor (new gp who didn't do the original tests) and my husband, I have been identifying as a celiac for the last 8 months or so. It does make it so much easier than explaining how complex my reaction is. I say this as I scratch my chin (which is itchy and a little broken out) and wonder what the heck I ate this time that was contaminated with one one-hundredth of a percentage of a gram of gluten. Sigh. But, I have found the thing that makes me feel better, and for that I give thanks.

[rdunbar]

those moments of doubt are perfectly understandable, but time, and the healing process (hopefully) clears all this up. I know I went through a period of maybe not doubt, but denial or stubborness, where i was careless about being exposed to gluten, coupled with just not having the information I needed in order to protect myself from it. well, then I discovered this board!

I'm pretty much self-diagnosed; I mean, being on a catering job (outside), and just breathing the air near someone slicing up a lot of bread for a party, and very quickly doubling over in pain, getting so lightheaded that I could barely stand up, much less work, and then getting insanely irritable was enough of a test for me. I would imagine this test has a better success rate than the blood tests!

sometimes I wish i had an 'official' diagnosis so that certain members of my family would take this seriously, because I know that they would respect it if someone in a white coat says its true, (theres a lot of nurses in my family!); but other than that, I see no need for an official DX for myself, and i'm getting more comfortable with that all the time. It's not like the treatment for celiac is a dangerous treatment that one would be foolish to needlessly take; and anyways, who in thier right mind would chose to have a truly gluten free lifestyle, free of CC and 'cheating', and eating out, without having to? If someone is willing to go through the inconvieniences, and shifts in social norms that it takes to have a gluten-free lifestyle for any length of time, then that would be proof enough for me; who would do that unless it was making a HUGE difference in how they felt?

I'm sorry, but a desire to be trendy is never going to be enough motivation EVER for someone to put themselves through this!

just this last weekend, someone told me they had been gluten-free for 6 weeks, while they were drinking a beer; somehow I suspected that they had been cheating along the way! ( i did point out that beer contains gluten, "oh, really!?")

After a point its like a chess game, and you're in check mate, you only have one move; If I knowingly consumed gluten with what I know now,and all the suffering i've been through, it would be like conceding the game; the game of life!

[gf-soph]

I'm technically non-celiac gluten intolerant too. When someone asks why I'm not eating the usual food, I ask them if they've heard of celiac. If they haven't, I give them the basic info, e.g. 'when I eat gluten, which is the protein in wheat, barley and rye it causes my immune system to attack my digestive tract and it makes me very sick'. If they've heard of celiac I sometimes go in to more detail if they're particularly interested, but often I just leave it there.

I don't feel defensive about being a non-celiac, but then I do have a GP who treats me just as seriously as a celiac. I also know enough about the issue to explain to people why it is just as important for me to remain gluten free as a celiac. I think because I am confident in my position people don't feel the need to challenge me about it. With health professionals they don't always fully understand, but I have enough poor blood tests and other symptoms that they seem to take me seriously anyway.

I know the frustration of diagnosis, I had positive blood tests but not as high as in a full blown untreated celiac, according to my initial gastro (they were 75 and 25, range 0-20, he said a celiac would be in the hundreds). After a negative biospy he told me point blank that gluten wasn't my problem and not to give it up, and I was happy to believe him. I went another year eating gluten, getting sicker and sicker, before a new GP educated me and got me to stop eating gluten. If I had stopped when I found out about the first blood tests i believe I would have escaped the persistent iron and b12 deficiencies, the gluten related depression, and the worst of the continuing gi issues and food intolerances that I now have to address using extremely restrictive eating. If I had any idea I would have stopped. If I had just hit google and asked these people here, who knows! I probably would have had more doubt in my mind about my decision, but I would have suffered far, far less.

When it comes down to it what you eat or don't eat is entirely up to you. The fact that you don't tick all the boxes for a simple diagnosis doesn't mean it's not worthwhile being gluten free if it works for you, and it obviously does. I also wouldn't be too swayed by the gene test, as they seem to be learning more and more about genes that can be related, it's not a simple as some of the doctors would have you belive. I hear it here all the time, but the single best test is how you respond to the diet

[ChristineSelhi]

I got my test results in the mail and I am DQ2 and DQ8 negative. The numbers are very different depending on where I look, but I remember my doctor saying at the time that 85% of the people with celiac had these two genes. Anyone know what the numbers are now?

[mushroom]

I got my test results in the mail and I am DQ2 and DQ8 negative. The numbers are very different depending on where I look, but I remember my doctor saying at the time that 85% of the people with celiac had these two genes. Anyone know what the numbers are now?

Did they test for what genes you did have, or just for DQ2 and DQ8.? What genes you actually have would be the more interesting information.

[Skylark]

Did they test for what genes you did have, or just for DQ2 and DQ8.? What genes you actually have would be the more interesting information.

This is the biggest study on DQ2 and DQ8. Note that the population they tested had GI complaints.

Open Original Shared Link

[MelindaLee]

This is the biggest study on DQ2 and DQ8. Note that the population they tested had GI complaints.

Open Original Shared Link

I was tested for DQ2 and DQ8. One of them was positive (I don't remember which at this moment and am too lazy to go find the paper ) However, my GI dx me with Celiac, due to having previously doing an endoscopy which found "something in the biopsy which looks like" I had celiac. (I was too uneducated at that time to ask more questions, but I follow up with him next week.) After the test, I was advised to go gluten-free. I have had a 150% improvement of symptoms I never knew could go away! (I thought it was old age and arthritis) "what is in a name??"