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Self-diagnosis Or Gluten Challenge?

Crayons574

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Crayons574 Contributor
Crayons574
Posted

I was advised by my doctor to go gluten-free a year ago. I finally feel so much better and all my stomach issues disappeared, but I would much prefer to have an official answer instead of diagnosing my self as a "celiac" or "gluten-intolerant." I am not sure I could ever force myself to eat gluten again, so I don't think I would be up for the gluten challenge, but is there a blood test I could get that could at least give me a hint that I was more than just gluten-intolerant and perhaps a celiac (i.e. the hereditary blood test)?

I realize I cannot get an official diagnosis unless I eat gluten, but I am trying to find a round-about way to some sort of conclusion. My main reason is, since I am self-diagnosed, I don't know whether I should be treating myself as though I am just gluten-intolerant (not worry that much when out to eat or the products I use), or if I should pretend I am an official celiac, and be extremely cautious about cross-contamination in food and products.

Any advice on blood work or anything would be greatly appreciated. Thanks so much!! :)

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FMcGee Explorer
FMcGee
Posted

I know there's a genetic test that will tell you if you carry the gene for celiac disease. There are a couple of downsides to this, though, that my doctor mom pointed out to me a couple days ago when I said something about my sister (who is not showing any celiac symptoms and had a negative blood test) looking into the genetic test. First of all, of course, being positive for the gene doesn't mean you currently have, or will ever have, celiac disease. There's a 66% chance that you WILL develop it, but that's not 100%. The second problem, if you live in the US or somewhere else without universal health care, is that insurance companies love to use the fact that someone had a genetic test done - be it negative or positive - as an excuse to decline insuring someone in the future. It's a red-flag issue for them. No, it shouldn't be; yes, it's unfair. That's how it is, under the insurance system we have now, when insurance companies can essentially use not liking your choice of wall paper as a reason to turn you down. So, that's something to keep in mind.

All of that said, when I have kids, I will think very seriously about having them genetically tested when they're little. There are up sides, and if you want some kind of test without doing the gluten challenge, and aren't worried about insurance, it's really your only option.

happygirl Collaborator
happygirl
Posted

The current ways to be diagnosed with Celiac are biopsy and bloodwork. You must be eating gluten for the results to be accurate, otherwise if you have Celiac and you have healed, you will likely not get a positive biopsy.

The gene test can tell you if you have one or both of the two genes that are linked to Celiac. About 1% of the population has Celiac, but about 33% of the population has the gene, so just having the gene does not mean you have or will have Celiac.

Any doctor can "diagnose" you with Celiac and write it in your charts. But their knowledge is no different than what you know (you feel better on the diet) as compared to if you "actually" have "true" Celiac, so I don't know if that would help you. Many people do need the diagnosis and research has indicated the diagnosis helps people stay on the diet.

ravenwoodglass Mentor
ravenwoodglass
Posted

Talk to your doctor. He was the one that wanted you to go gluten free and he had reasons for suggesting this. In light of the fact that you have seen resolution of your problems he has diagnosed you. It may even already be noted in your records.

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Congratulations on your improved health :)

How careful are you being right now? I find it's not so hard to avoid products that "may contain traces of wheat" or have other questionable ingredients. When I go to restaurants I stick with plain foods like salad, fish, omelets, etc... and I avoid things that might have hidden gluten (dips, sauces) or be cross-contaminated (especially deep-fried foods). Eating out is a special treat for me, not a regular occurence.

I still don't know for sure that I have celiac disease... I probably never will... but here are the factors that add up in my particular case:

- I have the DQ8 gene

- I had a VERY positive response to the diet

- I have other autoimmune disorders that cluster with celiac

- My mom tested positive for celiac disease

- When I had a celiac panel after being on the diet for seven months I still had noticeable levels of ttg and anti-gliaden (just barely within normal range)

- I have a mast cell disorder that got much worse after a few months on the gluten free diet (I've since learned that celiac disease suppresses the number of mast cells in your GI system and they return as healing takes place in the mucosal layer)

With all these factors I feel like a gluten-free diet is a very important part of maintaining my health. It's like taking medication... except with no side effects... and it's a lot tastier :P

gfb1 Rookie
gfb1
Posted
I was advised by my doctor to go gluten-free a year ago. I finally feel so much better and all my stomach issues disappeared, but I would much prefer to have an official answer instead of diagnosing my self as a "celiac" or "gluten-intolerant." I am not sure I could ever force myself to eat gluten again, so I don't think I would be up for the gluten challenge, but is there a blood test I could get that could at least give me a hint that I was more than just gluten-intolerant and perhaps a celiac (i.e. the hereditary blood test)?

I realize I cannot get an official diagnosis unless I eat gluten, but I am trying to find a round-about way to some sort of conclusion. My main reason is, since I am self-diagnosed, I don't know whether I should be treating myself as though I am just gluten-intolerant (not worry that much when out to eat or the products I use), or if I should pretend I am an official celiac, and be extremely cautious about cross-contamination in food and products.

Any advice on blood work or anything would be greatly appreciated. Thanks so much!! :)

i'm not sure why you need an 'official answer', or what that term implies. celiac disease has been around for a MUCH longer time than blood tests, biopsies and genetic typing.

the 'official answer' was (and, imo, still is); if you get better after going gluten-free -- then you are/were celiac.

frankly, i think many people classified as gluten intolerant are truly celiac. they just didn't consume enough gluten for a long enough period of time to have the physiological response that tests positive in the laboratory.

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