Reintroduced Gluten--change In Blood Test

[Helena]

To recap:

had the celiac blood panel, June 2006. was on a nearly gluten free diet.

test results: negative EMA, slightly positive anti-tTG; negative gliadin

Reintroduced gluten . . . but then ultimately decided not to do the biopsy. But I didn't want all that gluten to go to waste----so I suggested we redo the test to see if I had responded to gluten.

The results were basically the same. But the anti-TTG was slightly higher. In June, it was a 32; in August it was a 50.

I spoke with my doctor over the phone--I didn't want to ask him lots of questions because I know he is busy and I'll see him in mid Nov. anyways.

So I'd be interested in hearing how definitive people think this is. When anti-tTG disappears on a gluten free diet, it is a sign that the person has celiac. Is the reverse true? If it increases on a gluteny diet, does that indicate celiac more definitively than the one test does? Is the difference b/n 32 and 50 significant?

[chrissy]

sounds like you have celiac to me. our ped gi tests our girls TTg levels to see how well we are doing at staying gluten free.

[Budew]

I think about 100% gluten-free verses limited exposer because I don't have outward negative effects if I have gluten.

I wonder how damaging to the system (and what exactly happens) if I taste something with gluten on ocassion.

I'll be interested in the answers your question may generate.

[chrissy]

the TTg test indicates damage, so if your levels rise on gluten and drop when off gluten, then it is a definite indication of a gluten problem. there is no "safe" amount of gluten for a celiac-----and even if there was, you would probably get enough gluten unintentionally to fill the allowed "quota" without trying.

[GFBetsy]

The anti-Tissue Transglutaminase test measures whether or not your body is making Tissue Transglutaminase. That is what your body uses in an attempt to heal your intestines after they have been damaged through eating wheat. The test is 95 - 100 % specific, which means that if it comes back positive, it is showing that you have celiac, and not something else like Crohn's. The fact that your TtG went up after eating gluten means that your body was making more TtG . .. in other words, your body was trying to heal intestinal damage. To ME (and I must admit that I don't have any medical training - just some knowledge about these particular tests) it seems that your higher TtG after a gluten challenge means that gluten is damaging your intestines .. . in other words, you've got celiac.

And, yes, I would say that the difference between 32 and 50 is significant (although the positive ranges vary a bit from lab to lab). For my daughter's tests, below 14 or so was negative, 15 to 24 was "equivocal", and above 24 was positive. (Those numbers are just according to memory . .. it's been a year or so.) Her test came back in the equivocal range, just below the cutoff for positive. However, she was only about 1 year old at the time, and the tests are notoriously inaccurate for children. So we took her off of gluten just to see if her symptoms would improve. Her diarhea went away in 3 days, and she started smiling - I hadn't noticed how solemn she was until she started being happy. For us (especially because she was so young at the time) equivocal meant "positive". I'd say that, if 32 was "slightly positive" for you, it seems pretty clear that 50 is "pretty darn" positive.

Good luck with continuing the gluten free adventure!

[CarlaB]

It sounds like you've got it to me. What was your dietary response? That should confirm it for your doctor even without a biopsy.

Budew, the thread about someone eating donuts and not having a reaction should be of interest to you. Especially the administrator's response in that thread. To recap what he said, most celiac's have no symptoms, yet you still have the damage from gluten, so you're still putting yourself at risk when you eat it. He said it much better than I, so I encourage you to read his response. Plus, you'd be interested in many of the other responses, even though we did get off topic a little.

[Helena]

Thanks everyone for your input and for explaining about the tTG tests.

gluten-free Betsy---My GI doctor had told me that my first test was considered "slightly" positive so maybe he was using a similar scale. Based on those ranges you've posted., it does seem like 50 constitutes a negative dietary response to gluten--thanks for the info.

Well, I think I have a positive dietary response. But it isn't as clear-cut as it is with a lot of people because I'm not as sick on gluten as the "typical" celiac patient + I have lots of allergies so there could be other contributing factors.

I do have some GI issues---reflux, loose stools sometimes. The reflux improved (while waiting for 3 months to see the GI doctor I tried to figure out if there were certain dietary triggers) when I eliminated a number of foods from my diet----I got rid of flax and buckwheat (I suspected that they were causing GI problems, but they started making my throat itchy too so I think it is definitely an allergy) and oats (I was already avoiding rye, barley, wheat, although I'd have barley on the very rare occasion just to see if I still was reacting).

Then on doctor's orders (in preparation for the biopsy), I went back on barley and oats----more loose stools, more reflux. But not *significantly* more. Now that I'm off (since Sept. when we cancelled the biopsy), I still get reflux occasionally, and have had other GI issues sometimes . . . but I've improved. I am also eating one thing that I probably shouldn't be---millet by a company that also packages wheat flour. Will have to call the company and ask about the possibility of cross contamination.

The most obvious thing to me is tiredness---I just feel like my mind isn't as sharp. And I feel a bit "down." But it isn't major, major brain fog----it did cross my mind that maybe it is psychosomatic. i.e. if you make someone eat something and tell them that there is a possibility that it could cause cancer or result in other autoimmune disorders chances are that they might feel not so well when eating that food. I'm pretty sure that the tiredness if from the gluten and not psychosomatic, but I'm a pretty skeptical person and these doubts cross my mind from time to time.

Wheat *does* definitely make me feel tired . . . but I was diagnosed with a wheat allergy (positive skin prick test; positive RAST test). I noticed a major difference in energy levels after going off wheat. . . in retrospect, I generally felt tired since childhood after eating meals which consisted mostly of wheat (like pancakes for example. I just thought that was normal at the time.)

Other than the occasional hive, my symptoms when I eat wheat are more typical of celiac than an allergic reaction. But there *is* the possibility that my reaction to barley, rye, oats is from the wheat allergy (cross contamination). Actually, I did try rye when first going back on gluten, but it was making my throat itchy so I'm pretty sure that's an allergy too.

So I would say that even if I didn't have celiac (and I kind of think that I do) I should be avoiding gluten anyways . . . . if it was just a matter of not eating barley, wheat, oats I wouldn't be so concerned with having an official diagnosis (especially since my GI doctor is saying that he suspects that I have celiac). But having to worry about cross contamination *is* a major issue for me. If it was just the wheat allergy, I wouldn't concern myself so much about that. I don't obviously react to small amounts---I can have Rice Dream [edited to add: without having an obvious reaction], for instance. I already have a very limited diet and can't eat most of the things that people with celiac can eat, so eliminating anything is major. To give one example: finding a source of millet that is gluten free and is also free from nut cross contamination is going to be tricky (if not impossible). Having to worry about cross contamination in the kitchen is also a major issue!

[tarnalberry]

the positive tTg test means that your intestines are being damaged. when you went back on gluten, it went up, showing that they were indeed getting damaged from the gluten. I think that's a pretty clear sign that you do need to avoid all gluten - even the Rice Dream. even if you don't feel outward symptoms, doing regular damage to your intestines, even at low levels, is going to cause a chronic immune response that will impair your ability to absorb nutrients (raising your risk for nutrition deficiencies like anemia and osteoporosis), increase your risk for cancers and other autoimmune diseases, and generally leave you in a poorer state of health overall. (exactly how the chronic immune response in the gut degrades systemic health isn't well understood at a molecular level, but it does appear to be the case.)

[Helena]

I'm avoiding Rice Dream now for sure and am looking into cross contamination issues, disposing of cutting boards, wooden spoons, and even my beloved coffee grinder which I stupidly used for grinding barley (for porridge) when I was back on gluten. I'm just saying that my course of action would be different if I knew that I was having issues with gluten because of the wheat allergy as opposed to celiac . . . I can't know that, and even if I was to have a negative biopsy, I still wouldn't know what to think for sure so I agree---I'll have to assume I have celiac disease.

Given that I had one positive test, part of me wishes that I also had a positive EMA test or a positive biopsy or something else to make the diagnosis definitive. I think I have issues with having "official" confirmation because I avoid so many foods that I'm always worried that people are going to think that I'm neurotic or something.

But it sounds like the changes in the anti-tTG test *are* fairly definitive . . . so at least there was a purpose to having to eat all that barley! During the gluten challenge I did enjoy eating oatmeal again every morning . . . even though it caused minor GI problems. But I was developing a serious aversion to barley. Ick.

[chrissy]

you can buy gluten free oats from several sources. i bought them for my girls and they don't have any problems with them. they are a bit pricey, but for me they are worth it.

are you seeing a GI?

[tarnalberry]

keep in mind that some celiacs do react to oats, even "gluten-free" oats. (the oat protein, avenin, is structurally similar to the wheat protein, gliandin.) I believe the number is about 10%. but if you don't have obvious outward symptoms, it'll be hard for you to know if you're reacting to it or not.

[Helena]

I will look forward to trying gluten-free oats, but I will be careful about it. I guess that's one positive aspect of this whole ordeal . . . I thought that maybe I was allergic or something, but hopefully it was just the gluten contamination.

I think I should wait until I've been on the diet longer before I introduce the oats (in case I'm among the minority who do react to them. I had no idea it was as many as 10%) If my GI issues entirely disappear, then I'm sure that I'll be able to tell if the oats bother me or not.

Yes, I'm seeing a GI specialist. I'm happy with him in some respects . . . I did not even have to ask him about celiac disease---after I briefly explained my medical history (in connection to acid reflux . . . also, he seemed to take note of the fact that my grandpa has Crohn's and had colon cancer) the first thing he asked me was: "have you heard of celiac disease?" I had actually wanted to ask him about testing, but it was nice that I didn't even have to ask. He did send me to a dietician.

But----so far, he hasn't jumped to do any nutritional testing. Another doctor sent me for a bunch of tests--he didn't order all the right ones because he really doesn't know much about celiac disease, but I got iron, calcium, folate and some others done. All came back normal. I mentioned to my GP that I perhaps should get a bone scan and get some other tests done for fat soluble vitamins, etc.----she ordered the bone scan, but didn't seem to think that the other tests were necessary.

Who knows--maybe my GI doctor was actually planning on ordering the tests after my next appointment or something and I just jumped the gun on this one. I'm also hoping that my doctor will tell me that my immediate family members should be tested for celiac. I have no idea what he means by "I will continue to follow your progress." Tests? Just chatting about GI issues? I guess I'll find out in mid Nov.