JoshB

23andme.com

My molars never fully formed (had to be closed by the dentist), and I still have a couple that haven't erupted. I usually had a couple different canker sores going at any one time. This didn't help diagnose however, and no doctor ever even suggested celiac disease until I myself insisted on testing.

Depending on what study you're looking at your risks are only 5~10%. Still, for such a serious thing I would be inclined to test.

If worse comes to worse, you can order the test yourself for about $250 (with the "total serum" option). Depending on your insurance, you might not being paying much more in the end.

Yes. Your digestive system is very effective and massively redundant. You have to have quite a lot of damage to actually start having absorption problems.

Malabsorption is not necessarily celiac disease anyway. You're probably wanting a standard celiac panel from Quest or Labcorp or your local equivalent.

There's lots of things that cause celiac-like symptoms, and the condition is fairly rare. Doctors generally don't look for celiac disease because it generaly isn't celiac disease, so keep in touch with your doctor and try to work with him to figure out what's going on.

No, no. You're not stupid. Genetics results are confusing. I don't know anything special about it. I just had the same questions myself back in the day and Google had answers.

And yeah... a proper diagnosis would be nice. Much easier to tell family "Look. I have this alright? So stop complaining that I didn't eat your stuffing" than to tell them "Well, I think that maybe wheat isn't good for me so I'm not real sure I should eat this."

If your symptoms are that marked, though, especially considering your genetic susceptibility and the co-morbidity with Hashimoto's, I think it's pretty likely you have it.

Your formatting is a bit odd, so I'm not sure I'm reading your results right. But it looks like you're DQ2.5 / DQ6.

DQ2.5 (a subtype of DQ2) is the risk phenotype for celiacs. As a heterozygous DQ2.5 your absolute odds are around 10~15%. DQ 2.5 carriers make up 85% of celiac cases in the US, the remainder are DQ7.5 and DQ8.1. Hashimoto's is also a significant risk factor for celiac disease, with about 10% of hashimoto afflicted also celiac afflicted.

Rough odds --which are almost certainly pretty far off since I don't know how independent the genetic and hashimoto's hazards are-- (85%*90%) = ~76% chance that you do not have celiac disease. Which leaves a 24% chance that you do. That's really pretty high. The only way you could be worse off is to have doubled up on DQ2.5.

Unfortunately your antibody results are worthless as you did them after going gluten free. Very... strange that the doc would order them in that case.

So 24% not factoring your symptoms or apparent increased well being on gluten free. Factoring those things in... hard to say. I would think it's pretty likely that you have full blown celiac disease.

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Also, I do realize that there are several historical "What are your symptoms?" threads in the forum. In fact there are threads covering just about every aspect of what I want to ask. But I couldn't find one place that asked all the questions together. Also, most of the threads out there seem to be more restrictive. "Do your symptoms match these four symptoms I have?" rather than "What are your symptoms?"

Absolutely. I wouldn't be able to track everything, and the results would only be a little meaningful as there would be too few people and mostly the symptoms can be pretty subjective. It just seems like it would be more information than is currently out there. I've been trying to find proper studies on this, but haven't had any luck.

Doesn't work anyway. The poll info isn't displayed as I need, and you can't put enough options on it to even approach being a meaningful survey for all the symptoms.

I did start a thread just asking in general, and that'll have to do.

I wanted to do a poll though, because I was going to ask what symptoms people had before and after gluten free. It would be really nice to have them all nicely tabulated. Unfortunately, I don't think that the polls are going to cut it. You can't add enough questions and options, and the percentages don't seem to be calculated correctly. Actually, that's not fair -- the percentages aren't calculated correctly in terms of what I want to know. The math is valid, it's just not describing what I'm after.

The newest blood test for celiac is the Deamidated Gliadin Peptide (or DGP) and seems to be better than the others (and more specific) IMHO. If you are ever thinking of glutening yourself up for celiac testing I would make sure they included that one too.

DGP, looks good, but as the new kid on the block I think it's going to be more expensive and harder to find. From what I've read it has roughly the same sensitivity and specificity as current tests, though there is evidence that it's more effective for children.

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I just got blood drawn for a six month maintenance/compliance test for Quest. They have two versions of the test. One was $160 but didn't include the "total serum", I think. The other was $250 and did check total serum.

I tried to do this as a poll, and for some reason it didn't show. Just as well apparently because I was testing in another thread and polls don't seem to work very well.

So. We all know that there are tons of symptoms. I'm wondering what's normal. I find a lot of references to what can go wrong, but not much as to how often those things go wrong, and if ever got better.

So, would you kindly:

#1 - Tell us how long you think you had issues before diagnosis and the way that you were diagnosed.

#2 - What problems you had before diagnosis.

#3 - What got better, and how long did it take to get better.

I'll start off.

#1 - I probably developed celiac disease around six years old. I was diagnosed by blood test at 28. I found out about celiac disease and insisted on being tested because a genetic test I'd done for fun flagged me as very likely to have the condition and because the symptoms were very familiar.

#2 - I've had stomach pain, and frequent nausea and diarrhea. I also had joint pain -- with minor deformity, eye pain, sometimes a very rapid heart rate for no reason. Also, what seems to be auto-immune hair loss and constant multiple mouth ulcers. I'm 5'10" and 130lbs. My father is 6'2" and 180lbs and my grandfather on the mother's side was 6'4" and 240lbs. Occasionally I've had bouts with psoriasis and migraines. Although it's harder to say for sure I'd also say that my memory isn't a patch on what it used to be, and that I have at least a some issues with ataxia and mental focus.

#3 - Nine months gluten free. My stomach pain and diarrhea is better 60~70% of the time and I'm rarely nauseated. The canker sores almost completely stopped within a couple months. I haven't had any psoriasis or a migraine since going gluten free, though it's hard to say if that means those problems are gone, because they were infrequent to begin with.

Everything else is the same or worse.

Actually, that's enough to see what's going on. We do see null votes. Great!

Unfortunately it looks like there's a bug in tallying results... so maybe polls aren't at all useful.

I want to better understand how the polls work on the forum. So I'm testing it out here.

I'd appreciate it if people would click a each choice randomly between "little" and "lot". Also, please randomly choose a "little/lot" set to not check at all, as I want to be able to tell if we can see "null" votes.

That sounds like a smart idea to me. Make sure you're eating gluten for a couple months then ask for a celiac panel. Unfortunately there doesn't seem to be a standardized name for the tests, but mainly everybody is running the same thing now. It should test for anti-transglutaminase(usually known as ATA or tTG) antibodies and/or for antiendomysial(usually known as IgA), usually the tests also include gliadin(AGA) antibodies which are less specific to celiac disease but more sensitive. You'll also see a "total serum IgA", or maybe just another test marked as "IgA" with. That one will have a range you're supposed to be within --all of the other tests are under/over. The "total serum" is checking that you are properly producing antibodies in the first place, as it's possible to have a false negative on the other tests if your immune system is out of whack. The whole panel should cost about $250, though your doctor may also want to tack on some additional tests for other possible conditions and/or vitamin deficiencies (very common in celiac cases).

I've been gluten free for about 9 months now. The first couple months were worse. At this point my stomach issues are 60~70% better. Everything else is the same or worse.

I probably had it for twenty years before diagnosis, which isn't uncommon. Unfortunately long term damage is supposed to take longer to heal, and might possibly not heal. Still, I'm grateful that I don't have to run to the bathroom ten times a day, and my stomach rarely hurts now. Also, I know how important it is to eat properly now to prevent further damage, so that keeps me on the straight and narrow even if I worry that the other issues will never go away.

If you're going through what I did, you feel worse right now. You're exhausted and everything is bruised, and maybe you're a bit depressed. That part does get better. Push through and in another week or two you'll pick up and your muscles won't hurt all the time.

There's a ton of info on the forum here about what you can do and eat to speed along healing time.

Pros:

*Make the doctors happy???

*Possibly confirm what you already know.

*Maybe give you a good idea of just how damaged your gut is, though I've never figured out what we're supposed to do with that info.

Cons:

*Expensive. > $2000

*Dangerous. Anesthesia is not safe. That's why they have always have a separate anesthesiologist and he gets payed big bucks. It's not because this is a hard job; he's the guy they are going to sacrifice to your family in the wrongful death lawsuit. It's also possible to puncture your stomach with the scope.

*Low test sensitivity means that the endoscopy is significantly likely to confuse the issue.

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The blood test is really pretty good, and a clear positive is supposed to be more that 95% specific. What's more, I was reading a recent study --that I can't be bothered to find right now-- where they went back and re-endoscoped the 5% negatives a year later and magically found that 95% of them were now positive. This would indicate to me that either: A -- even the best GI doc taking 6 samples under supervised conditions can miss something 5% of the time, or B -- the blood test flags developing celiacs disease that hasn't yet manifested in Marsh changes.

Unfortunately different labs use different methods and reporting ranges, so absolute numbers like that aren't very helpful. As I understand it "IgA" indicates gluten antibodies. These do not prove or disprove celiac trouble, they are just suggestive. You can have false positives for a number of reasons, and you can have a false negative if your immune system is doing strange things. "IgG" tracks gluten associated antibodies against the yourself. Generally a positive test here indicates celiac disease. A negative IgG doesn't necessarily mean anything as the test is not all that sensitive.

Hard to say without knowing the ranges on your test how "positive" your IgG was.

I rejected doing the biopsy as it seemed to me that they'd already tested positive in a way that was known to be accurate. I figure the biopsy is expensive, dangerous, time-consuming, and not very accurate at all, so what's the point? But... I had very high positives on all the blood work. If my blood work wasn't clear, I'd probably want a second way to test.

Ask your doctor for clarification. He should be able to tell you what your tests mean and why he wants to do the endoscopy. If he's not real clear I wouldn't be afraid to ask for a referral to a specialist.

There's no such thing as a DNA test for gluten intolerance, and if you have a parent with celiac sprue the odds are that you do not have it yourself. Sure the odds that you do have it are higher than the general population (just as determined by family history), but even with a positive parent your odds would only be about 20%.

DNA tests are very useful for screening out a celiac diagnosis. They can tell you that it's not possible for you to develop intolerance and they can tell you if you're more likely than normal to develop celiac disease, but the test can't tell you if you already have developed it or if you ever will.

I don't trust Enterolabs in general. They seem to have made a business out of testing positive rather than simply testing. It looks like they've made up a bunch of tests on their own, and there's nothing to back up that their tests work other than their own statements and opinion on the matter. Furthermore I'm not sure about their interpretation of the red cross' test either.

Searching on Google and Wikipedia I think I can tell two things:

#1 -- You are freaking weird. No offence, but hardly anybody has your HLA-DQ type.

#2 -- While DQ 8.1 comes with a slight risk of celiac trouble. DQ 8.5 does not seem to. Although as Wikipedia points out this might just be because there are so few people with that genotype that we simply haven't found a DQ8.5 celiac, rather than such a thing not being possible.

(I could be completely misinterpreting the info here. I'm not a geneticist nor do I play one on TV. I'm just reading what the website says.)

You can test high for gluten antibodies without having celiac sprue or even allergy or general intolerance. That's why they also test for tissue-transglutaminase antibodies (basically 100% diagnosis if found). If they don't find TTG, then they want to do a biopsy for confirmation. Apparently there are a number of problems that can raise gluten antibodies: ulcers, IBS, anything that pokes a hole in your gut. If gluten gets into places it's not meant to be in, then your body can start reacting to it.

My doc left a long rambling message about how my white blood count was normal and I didn't have arthritic marks and my this and that were normal, and then right when I'm about to hang up thinking that he has nothing to say, he ends with "and your ttG and gliadin antibodies are off the charts so you probably have celiac sprue."

I don't think you can expect decent food from a school cafeteria, let alone decent gluten-free food.

That said, how do you know it was gluten and not something else? Do you react that quickly? I think (though I'm not sure) that it takes me at least half a day to react.

Get the blood test. It's fairly cheap and easy, and then you'll know for sure.

Going gluten free is hard. It's expensive, and you'll desperately want things you can't have, and (if you're like me and others I've talked to) you may find that going gluten-free is physically painful. I was depressed and energy-less and felt like I was bruised all over for a couple of months. It was awful, and you don't want to do that unless it will benefit you. Also, you don't want to back out and decide that you'll eat gluten for a couple months and then get tested to know for sure; you don't want to do it twice.

If you don't take the test you'll never really know. The symptoms you're dealing with could easily be something else, and you could just be delaying a proper diagnosis.

Eating gluten-free you're going to be a pain in the ass for family and friends, and you owe it to them to know for sure. It's also your defense when uncle Frank complains that you don't just eat the stuffing at Thanksgiving like everybody else. Could also be your defense against the IRS if you want to try to claim the difference in food cost as medical expenses.

Have had the same symptoms for a couple of years except in my hands more than my feet. My fingers and toes are also twisting a bit out of alignment. I'm a programmer so painful eyes and painful hands can make things... difficult.

No rheumatoid or inflammatory markers. Doc is clueless and I've basically given up on figuring it out at this point. I just take the max possible IB dose every day.

You wouldn't be feeling bad because of gluten. You haven't been gluten free long enough for any problems to have resolved yet, so accidentally eating gluten isn't going to do anything to you at this point.

I felt terrible for a month or so when I started eating gluten-free after Celiac diagnosis. From what I understand this is very common.