Should I Ask My Gi Doc To Redo The Blood Tests?

[Helena]

Seems like I come up with a new question everyday. Okay, so here's what I've been thinking about today.

To recap:

have been on a very very low gluten diet almost approaching gluten free (contaminated oats on the rare occasion, occasionally rice milk. might have had barley like once in the past year).

blood test results for gliadin antibodies: negative

blood test for tTG antibodies: positive

I've pretty much decided to go back on gluten and go for the biopsy.

But should I ask the doctor to redo the blood tests either just before or just after the biopsy? If after diagnosis, doctors measure how well one is doing on the gluten-free diet by doing blood tests, maybe I ought to have the test done while I'm all glutened up so that we can measure to see how I'm doing???

[penguin]

OK, two things: Eating gluten for you is dangerous. You're allergic to wheat and rye, right? All gluten grains are contaminated with other gluten grains because of grain storage, transport, etc.

Secondly: You'll have to eat A LOT of barley to get up to an acceptable level of gluten daily, as I believe (correct me if I'm wrong), barley doesn't have as much barley per grain as wheat does. How do you eat your barley, anyway?

Third: (I guess that makes it three things) If your TtG levels were elevated, you have celiac. The gliadin tests are more sensitive, but less specific, and the TtG is more specific, but less sensitive. I don't think there are many false positives with the TtG.

Why worry about it? Since you have grain allergies, does it really matter anyway? Be totally gluten-free and be done with it

[mylady4]

What will you gain by doing a biopsy? Since the only cure is a gluten free diet and you are doing that anyway why go back to feeling miserable. I had a biopsy earlier this year and it did not show any damage. I think that because I never normally ate alot of gluten and I did not have symptoms that long I luckly did not do any damage so nothing show up. My intestines were swollen and had some ulcers on them but no villa atrophy. I had a blood test before and after and there was marked difference in the levels even thogh they were not that high to begin with. Since the blood test is easy the choice would be yours and your doctors but as for the biopsy, if you are feeling better being gluten free, why put yourself though it.

TTFN

Nicole

[Helena]

Thanks for the replies. And I appreciate the info. on the tTG test. I think I'm going to have to talk to the GI doctor before the biopsy to figure out how he is going to proceed if the biopsy is negative. If he puts a lot of stock in the biopsy I might not want to do it. . . .but if he sees it the way I do I might want to proceed. I'm wanting the biopsy mainly because I figure that with all my dietary restrictions I had better have documentation for all my health problems. If the issue was just celiac and maybe an allergy or two it would be okay . . . but if I ever ended up in the hospital or something and wasn't in control of my own food I would be very difficult to cook for. And I wouldn't want people to resent my claiming to have so many health problems.

But also I figure that if one goes through the tests and get a positive result that I'll get better medical care. If I get a diagnosis, I'll have blood tests to ensure that the gluten-free diet is working, right? And someone will do tests to check to make sure I don't have any dietary deficiencies? Going gluten free in terms of eating non-gluten containing foods will be fine. But having to buy only things made in a wheat-free facility will be tough.

Penguin, you raise a good point about cross contamination. And if one has anaphylaxis there *theoretically* isn't such a thing as being a little allergic . . . but I would guess that most of my symptoms for wheat are related to celiac. I do get a few hives sometimes, but my other symptoms are tiredness + some GI issues. Most allergic reactions for me start with throat itchiness and proceed from there so my reaction to wheat is atypical as far as my allergic reactions go. I wasn't even sure that it was an allergy until I had a positive skin prick test and a positive blood test. I guess that's a long way of saying that yes, I have an allergy, and, yes, I should be concerned. . . but I think my risk of having a major reaction with wheat cross contamination is very low.

[Helena]

Penguin, forgot to address the second point you raised. (Was kind of tired last night)

Yes, I'm concerned that I'm not eating enough barley. I've been researching this . . . all I've been able to find is that barley is a low gluten grain. Someone from a celiac association thought that maybe gluten contains 30% less gluten than wheat . . . but I'm not sure if that is a firm figure.

After doing all this unsuccessful research, I called my dietician who called dieticians at the Hospital for Sick Children (here in Toronto) and at Mt. Sinai. no one knows! But I do have a number of different guidelines for how much gluten to eat (measured in slices of bread):

Canadian celiac assn: 3 slices of bread every day for at least a month

dieticians at Sick Kids: 1 slice every day for 4 months (maybe this guideline is for children, though.)

GI doctor at another Toronto hospital: a "normal amount of gluten" (so I'm thinking 4 servings or so) for at least a month

My GI doctor was not specific. He just said to reincorporate gluten. So I asked: how much? how often? would 1/3 of a cup of barley every other day be fine? He said: sure!

I asked him what the minimum amount of gluten I should be eating. He said he didn't know . . . no one knows . . there haven't been definitive studies.

So from June 20 up until the end of last week, I was eating 1/3 of a cup of barley (when cooked it is more like 1 cup) every *other* day. But since Aug 10 when I got my results back I've been eating it every day. (I imagine that the results were in earlier . . . but no one called me or returned my call when I left a message.)

I have made barley porridge on the rare occasion---I grind it in my coffee grinder and then cook it in 3X the amount of water and add honey and cinnamon and nutmeg and then add milk. (I use my coffee grinder for millet and rice porridge too. Am a big fan of millet porridge!)

Lately though I've been just throwing 1/3 of a cup in with 1+ cups of milk and then eating it with vegetables. (yesterday I had a homemade tomato sauce with tomatoes and stir fried red peppers and rosemary and lemon juice and olive oil + cheese)

My biopsy is scheduled for Oct . . just after Canadian Thanksgiving!

[Helena]

An update on my situation:

I had an appointment with the GI doctor today. Finding sedatives that I can have (without corn or soy as fillers) is really difficult . . . my allergist thinks I'd be okay with some corn, but it isn't something he can predict and wants me to avoid it if possible. Plus I raised the issue that no one can really predict how accurate the biopsy will be given that I'm eating barley rather than wheat . . .

So he asked me what I would do if the biopsy is negative. Since i'll be avoiding gluten anyways, he said he would prefer not to do the biopsy but left the decision up to me. I'm just going to go gluten free . . . he has referred me to a dietician and I will continue to have follow up appointments with him.

I suggested doing another blood test to see if any of the antibodies have increased since I've been eating gluten (I don't think I've been eating it long enough, but at least this way I won't feel like eating all that barley was entirely in vain). He was okay with that suggestion . . . I asked about genetic testing and he said that he didn't think that that was available. (Anyone know if that is true in Canada??--from his reaction, I don't think that he had heard about genetic testing.)

In some ways, my GI doctor seems light years ahead of some doctors given that he immediately suggested celiac testing the first time I saw him and is not discounting my symptoms. But he didn't give me any guidance at all about the gluten free diet . . . not a brief handout with basic info.--nothing. Another doctor I'm seeing went ahead and ordered blood tests to check for nutritional deficiencies, but my GI doctor didn't even suggest that. He did refer me to a dietician, however (perhaps he expects her to inform me about going gluten free), and he wants to see me in a few months for a follow up appointment.

[aikiducky]

Sounds like you have a sensible doctor! He probably expects the dietician to help you with the diet... but you might find that you know more then the dietician from reading this board already, so don't expect too much.

I guess nutritional deficiencies might not be something that a GI doc specializes in, as odd as that might sound...

Anyway, I think you're doing the right thing by going gluten free.

I couldn't help but notice that your coffee grinder is now cross contaminated with barley, and you'll either have to clean it really really well (if that's possible) or get a new one, to be 100% gluten free...

Let us know how you're doing on the diet!

Pauliina

[Helena]

Good point about the coffee grinder! I'll try cleaning, but they're kind of hard to clean thoroughly . . .perhaps I'd best replace it.

Yeah, I guess doctors aren't too up on nutrition and all that . . . still, since the only treatment for celiac disease is the gluten free diet you'd think that they might give their patients info. on that! I'll see what the dietician has to say . . . I'm actually less concerned about getting info on the gluten free diet (as I think I'm fairly informed on that) than with checking to make sure that I'm getting enough nutrients.

I still feel kind of ambivalent about the whole cancellation of the biopsy . . . I'm glad to be off gluten, but I'm curious about the state of my villi.

If I've had celiac disease, I'm sure I've had it since childhood (I often felt tired after eating and just figured it was normal.) Also, I have major dental enamel defects . . . my dentist is actually pleasantly surprised that my teeth have held up as well as they have. When I was 15, he predicted that I'd have to have most of my teeth capped by the time I was 30 . . . he attributed the enamel problems to antibiotic use (there was a type of antibiotic that they gave to kids in my generation which causes thin and patchy enamel . . . I was on a steady diet of antibiotics as a child.)

One of my doctors is running some blood tests for nutritional deficiencies . . . I'll get the results when I see him next. If I have nutritional deficiencies, and if the celiac blood panel is more positive this time (last time I was just positive for tTG antibodies) *maybe* my GI doc will change his mind about the biopsy . . . maybe I can get him to do the biopsy without putting me back on gluten.