JoshB

Gotta vote against the New Planet. I wanted to like it, really I did. Unfortunately it's costs more than Spaten, and it's about on the same level as gluten free "bread".

Learn to like wine.

Hate to be the bearer of bad new, but...

Lots and lots of people get worse before the get better. I did. You've got a chain of auto-immune reactions going off. It just starts off with your body hating gluten, when you have celiac disease your body has started hating itself, and so it damages your stomach, which sets off more immune response, which damages your stomach, which sets off... well you get it. Think of it like a car engine, if you cut the gas it's still turns over for a while.

Eventually if you don't keep feeding the reaction with gluten it will die out, but it might take even a couple months. And at that point you've not gotten better, you've just finally stopped doing new damage. Then you start healing.

So you haven't really healed anything yet, but you've probably dramatically changed your diet, and you're asking a damaged digestive system to adapt on the fly to a completely new balance of food.

Also, you may be one of the people sensitive to wheat as an opiate, and now you're having withdrawals. Yeah, I know that sounds crazy, but it's pretty well documented at this point. I went through it myself, and it was not fun. I've seen the original research before, but can't seem to find it now, so here's a link to a doctor's discussion on the subject: Open Original Shared Link

So all that sounds pretty bad, but press on. You're half way through the worst of it. If you are in withdrawal that should cut back soon, and your gut bacteria should be adjusting to your new diet which will help with the nausea. Remember to eat a lot of fruit and veggies. Even if you want meat and starches as comfort food. You don't have the wheat fiber to push things through anymore.

So... this isn't a popular viewpoint on this forum, but as far as I can tell it is the viewpoint backed up by actual evidence: If you test negative on the blood test you almost certainly do not have celiac disease. There is a 1-2% false negative rate, but these should be flagged by a very low "total serum" or "total IgA". Your doctor should have examined that possibility when he read your lab report. Technically there's also the possibility of a lab mistake -- judging by the testimonials on this forums where several people say that they had completely normal blood tests but abnormal endoscopy this seems to be distressingly common. For the possibility of lab mistake, I've read some recommendations that the test should be done again at another lab when there is very good reason to expect celiac disease.

The most common "false negative" reason really seems to be doctor interpretation. It wouldn't hurt to look at your lab yourself. My doctor, for instance, tried to tell me that although I was high everywhere else, since I had "normal total IgA" he wasn't sure I had celiac disease... So yeah, your doctor could be a moron -- or to be kinder, could be inexperienced in reading celiac labs and dealing with celiac disease. You could also possibly have had a mistake at the lab, or you could possibly be so unique that the tests don't work for you because your body has found a way to have celiac disease in a completely different manor from everyone else in the world... but that's probably not the case.

Open Original Shared Link

I had to spend a couple of days in the hospital. I brought in my own food but seem to have gotten badly glutenated somehow. I havent been this bad since diagnosis! I had to have a CT scan with injected contrast. I asked the nurse what the ingredients are but she couldnt find out. I know gluten can sometimes be in the oral kind but what about the injected kind?

I don't think so. Gluten containing ingredients can supposedly be found (though I've never actually seen it) as binders in pills. The very last thing they want in any injected medication is "binding". Actually, from what I've read, wheat starch is so heavily processed for medical purposes that it shouldn't matter even if it is used in pill; it's supposed to be pure starch, no gluten.

My favorite dining experience was the greek salad I ordered a few months ago - I told the young waitress that I couldn't have any wheat and therefore didn't want any croutons on my salad...and the croutons were left off but piles of pita bread covered the whole top of the salad...I gave up on that restaurant - their waitresses are absolutely clueless even when you try explaining (their eyes glaze over actually).

This exact thing happened to me a couple weeks ago. I decided to just chance picking the pita triangles off... not the best idea. Oh well. It happens.

All of the diagnostic tests center around either improper antibodies or actual damage in your intestines. If you've been good on your diet, you won't have either of those even if you do have celiac disease.

You can look at your genes; try 23andme.com, but be aware that this is not a test for celiac disease. At the most, looking at your DNA can only tell you if you are susceptible to the condition. Not whether you have it. There is are almost no conditions where you can look at your genetics and say "I have this", your genetics only tell a small part of the story.

Depends on what was "positive" some of the blood tests are very sensitive, but not specific to celiac disease. The biopsy is very specific but not very sensitive.

38 which counts as sufficient, they say. I drink a good bit of milk, try to get some sun and take some supplements (just over the counter).

Worth noting that Wikipedia says 30~50 is the desired range, and that anything over 50 doesn't provide increased benefit and is in fact a little risky.

One of my big questions when I learned about celiac disease was "How long will it take to improve?"

At this point, I still have a lot of symptoms, but I thought it was worth mentioning that after 7 months gluten-free, my tTG-IGA levels have fallen from 9X more than the positive marker to .5X of "positive", and my anti-gliadin IgA have fallen from 17X to about .5X the positive marker. So after initially testing extremely positive, not even a year later I'm testing in the negative range.

Part of why I'm excited about that is that I've tried to do it without going crazy about being gluten free. A lot of people advise never going out, and never eating something that you haven't cooked yourself. But I've been going over to friends and family and eating out. Often there will be a minor fight where I have to insist "No I really can't eat that", but basically I've been able to survive and improve without completely cutting myself off from the outside world. There have regularly been slip ups and I'll get sick, but overall it seems that I'm improving day to day.

Anyone eaten at PF Changs? They advertise a gluten-free menue? How did it Go? There is one 5 hrs away near my mom's.

I've been fine at PF Chang's a couple times. The founder's wife has celiac disease, if I remember, so they are pretty good about it. There are still only four or five "safe" items on the menu, but they are very tasty.

Sounds to me like Open Original Shared Link had it happen twice. Terrible. No association with Celiac Disease so far as I know.

"Accurate" isn't very well defined. Let's say the "blood test" in this case maybe EMA-IgG is very specific but not very sensitive. If it says you have celiac then you have it. Unfortunately there's a 10% or so chance that if you have celiac disease it might not tell you about it.

In any case, it's all the same in the end, right? You can't eat gluten. What's the point in arguing with your doc? Is there something riding on the celiac disease diagnosis over the DH diagnosis?

Wait and see what the test says. Your antibodies probably would not have dropped in a single month.

Ibuprofen helps a lot with joint and eye pain for me. I've not found anything that affects the stomach. Not tried mmj but I don't think I could use anything that would slow me down. To busy at work.

I think you're [DQ 7.5]/[DQ 5]. [DQ 7.5] is an oddball. Pretty rare except in the middle east. It seems to confer some risk for celiac disease, but I haven't found anyone who says how much risk. Only a very small percentage of Celiacs have [DQ 7.5], but then [DQ 7.5] people make up a very small percentage of the population. [DQ 7.5] could potentially split to help form [DQ 2.5] if you had a child with the right (or wrong maybe) partner.

You can see most of this on the Wiki article I linked to earlier.

Hla DQA1* 01

Hla DQA1* 05

Hla DQB1 0301

Hla DQB1* 0502

That's the important section of your test. Your "A"s are not fully resolved, so you might have A1-101, 102, 103 etc... and A1-501, 502...

I know. I'm not angry, just frustrated. Especially when the doctors think I'm a hypochondriac and that all of my symptoms are from "stress." Anyway, thanks again for replying!

Heh. My stomach troubles were "stress" from when I was six.

Eating out is tough, but I'm not sure you're cleaned out enough yet to really start having a distinct reaction. I would think that at two weeks your body hasn't even started to realize it's not being constantly provoked. It took me maybe four months to start having a reaction -- or at least one that would be felt above the general stomach symptoms which were still constant at that time. It was very hard to pin down at that point because it seemed to take hours or even a day or two to occur. Over the last few months, it seems like the reaction has become much worse, and comes on now within two to three hours.

I'd say your best value is 23andme.com. You'll have to be willing to look up data on DQ from snpedia.com, though, because 23andme itself only flags DQ 2.5 (the major risk factor for celiac disease). I'm not sure if it's even possible to determine DQ 7.5 through genetics, and they don't tell you about DQ2.2 or DQ 8.1 on 23's website. To get that info you'll have to dig into your raw data yourself.

Still, that seems to be better than a lot of the gene tests on offer elsewhere. People are always coming here saying "I have DQ2!", which doesn't tell you what you want to know. DQ 2.5 is very high risk. DQ 2.2 has a small amount of risk. DQ 2.X doesn't seem to matter. Mostly DQ 2 is split pretty evenly between 2.5 and 2.2, so I really think you want to know that lower level data.

Open Original Shared Link

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Also, when I say 2.5 is "very high risk" that's relative to other DQ types. DQ 2.5 carriers are still unlikely to have celiac disease. Genetic factors influence risk, but they don't write your destiny.

They generally don't know as much, and as easy as it is to get angry about that, it's not really their fault. It's a very hard disease to catch, and a fairly small number of people have it. How much would you learn if you were a doctor and had two patients with a particular disease that they saw another specialist about anyway. If it even looks like you might have it you've probably gone and read 10X more on the subject than your doctor has ever come across. And remember what your GP doctor has seen is half remembered and thirty years out of date from med-school.

Transglutaminase IgG is concidered a little less reliable than ttG IgA, but everything I read says it is still very reliable, and you seem to have a strong positive. If it were me I would forgo the biopsy unless I needed it for insurance reasons or your own peace of mind. You already have a positive reading for a test which is more accurate than the biopsy. The biopsy might help you figure out how much damage you've already got, however.

It's a little strange that your ttg-IgA would be so relatively low. It's possible to have some general immune system deficiencies that can influence that. This is usually tested for in a celiac panel, but didn't seem to be in your case.

Open Original Shared Link

I'm asking because there are all sorts of "inflammation", and if your inflammation didn't resemble celiac inflammation you might be barking up the wrong tree. If it was celiac inflammation, then it seems like you have celiac disease. I don't think you can have it a "little bit". That's like being a "little bit" pregnant.

Anti gliadin IgA antibodies are not specific to celiac disease. The IgA form of ttG antibodies are supposed to be more specific to celiac disease. [Open Original Shared Link I don't think that either one is supposed to be a fool-proof indicator, though ttG-igA is close at higher levels. IgM seems to indicate that your doc was looking for signs of infection, and is --I think-- irrelevant to gluten intolerance. You unfortunately don't seem to have EMA-IgA which can sometimes show something the others don't and is supposed to be a foolproof test (though it's not very sensitive and is often falsely negative).

Still, your ttG seems to indicate at least a little damage, which might be caused by celiac disease. If your GI saw minor inflammation that looks like celiac trouble, then I'd be inclined to think that you got lucky and caught things just as they were starting. That makes you about 30 years-worth luckier than most people.

I think anti-gliadin is supposed to drop quickly. Anti-tissue transglutaminase is thought to take much longer to resolve. Four months is not long.

Your symptoms could all be from celiac disease. It tends to mimic other auto-immune diseases and can even provoke those actual disease if left to itself long enough. Celiac patients can have all sorts of raised antibodies, the ones they test your blood for are just the ones most specific to celiac disease.

Right now your doctor wants you to take care of your gluten problem. It's a known and imminent threat, and until it's resolved you'll have symptoms and test markers that could confuse the issue if you're off looking for other problems. I'd bet more than half the people here have celiac disease plus some other horrible symptom that was really what was bothering them in the first place and led to the diagnosis.

I've been gluten free for nine months and most of my issues are still hanging around. I read about the co-morbidities and immediately wanted to test for related conditions that I have symptoms for. It ended up just being a waste of time and money.

Second the DGP test idea as the older tests are not supposed to be at all accurate in children (though I don't think DGP is supposed to be perfect either). His TtG certainly seems suspicious.

Also... your HLA type doesn't seem to put you at risk for celiac disease. You're (at least half) HLA DQ2.3 which is not a risk factor.

Open Original Shared Link

What's your blood work say?

There's still some debate in the medical community over whether gluten intolerance exists. There's not been a whole lot done yet on how it should be defined, whether it's a permanent state or what the risks are, if any, beyond the general symptoms.

I've been trying to eat with friends and family, eating off the gluten free menu if available and and if not trying to carefuly choose things like a simple salad without croutons. At this very moment I'm paying for it. Went to a Mexican place for lunch and got a tostada. It had a hidden layer of salsa that I noticed after one bite. I thought "Gee that looks awfully thick". Went and asked the cook and "Yep" thickened with flour. Very sick right now.

If that's the price, though, I'm willing to pay it. But I'm not willing to pay up with cancer, diabetes or additional nerve damage, so I've just done new blood work to try to see if my antibodies are falling. I guess I'll know if playing loose and fast was a good idea pretty soon.