Inconclusive Test Results, Biopsy Required

[Helena]

Hi,

Warning: long post to follow! Feel free to skim and pick and choose which questions to answer.

I was wondering whether I had celiac disease, but since I have been on a gluten free diet, the GI specialist didn't think that the blood test would show anything. But he did some blood tests anyways. Well, one test was positive and one test was negative (whatever that means--doctors don't tend to give much info., do they?) So I definitely need to go through with the biopsy

Is a false positive (for whatever test ) possible if one has been on a gluten free diet? Why would one test be negative and one be positive?

Now I'm really serious about going back on gluten. I *have* gone back on gluten as discussed with my GI doctor but after doing some more research it seems like it won't be enough. My doctor was vague on how much gluten I needed to eat . . . I suggested: "would 1/3 of a cup of gluten-containing grain every other day be enough?" He said "sure." When pressed, he said that there weren't any clinical guidelines for this situation.

But I've since heard that one needs to eat the equivalent of 3 slices of bread per day every day for 3 weeks . . .elsewhere on this board I read that it needs to be for 3 months. Anyone have any light to shed on this? I'd love to have a reference because if I need to reschedule the test, I'll need to show the doc where I'm getting my info. from.

So I'm wondering if I'll have enough time between now and Oct. 10th (the date that I'm having the biopsy) to wreck my intestines enough should I have celiac. Before June 19 I was gluten free . . . between June 19 and this week, I ate 1/3 cup (dry--so more when cooked) of barley every other day.

What makes things more complicated is that barley and oats are the only gluten-containing foods I can eat. I have been diagnosed with a wheat allergy and I avoid rye too (make my throat slightly itchy). Anyone know how much gluten is in barley in comparison to wheat? How much barley would I have to eat to = 3 slices of bread?

I really don't know if I have celiac. It could all relate to wheat allergy since oats and rye are all cross contaminated with wheat.

Some things that I have noticed:

1) I've *always* felt tired after eating a meal with a lot of wheat. I just figured that carbohydrates make people tired . . . but I noticed a difference when I stopped eating wheat. Rice pasta doesn't make me tired!

2) While I don't think that I was ever severely anemic, I did get a pounding heart during my period. That hasn't happened to me for awhile. . . . so maybe without the gluten I'm absorbing iron better. Last year was the only time I had my iron checked . . . and it was fine (but I was gluten free).

3) after I went off wheat, a lot of people told me that I look better. . . .especially people who see me infrequently. I don't really notice a difference, but my sister says I look less "pasty."

4) My stools tend to be a bit loose when I'm on gluten. Not a *huge* problem . . . but there's a difference.

5) I've always needed to eat a lot and eat frequently . . . people used to comment "how can you eat like that and stay so thin." I don't think that I'm too thin . . . but I'm at the low range of what is an acceptable weight for my height.

6) My tooth enamel is just awful--I have pitted teeth with an enamel that flakes off easily! But this could be because I was on a steady diet of antibiotics when I was a kid (apparently there was a type that results in problems with enamel).

*But* I expected that I'd have a hard time of it when I went back on gluten and I'm not doing too badly, really. Aside from #4 I don't notice that much of a difference. It's kind of hard to tell because I'm often tired anyways with killer environmental allergies, but with barley I don't notice that I'm as tired as I was when eating wheat.

So I'm really confused. What I do know is I want to make darn sure that that biopsy is accurate and am determined to eat as much barley as it takes!

[queenofhearts]

How long were you off gluten? Long enough to heal completely?

Leah

[Helena]

Hi Leah,

Thanks for the reply.

I've been wheat-free for awhile . . . it has been at least 3 years. Between the time of the wheat allergy diagnosis and Oct. 2004, I ate *a lot* of oats (but not rye . . . maybe I had barley a few times, but very infrequently). Then I went on an elimination diet (which my allergist put me on) . . . rye and oats were out for a long time. I did try rye for a couple of weeks, but stopped eating it thereafter. I've been mostly staying away from oats . . . but have been having them occasionally. I don't eat any preprepared foods on account of multiple food allergies, so I wouldn't be getting hidden gluten in very much (although I have not checked to see if my spices contain gluten. And the millet I eat is not processed in a wheat-free factory.).

So I haven't been on a *strict* gluten free diet.

[queenofhearts]

My hunch is that you have been ingesting enough gluten already that you are likely to show damage after a shorter gluten challenge-- in fact you might even have damage now. The blood test might be indicating that you still do have exposure. And there are hidden glutens besides processed foods-- cross contamination, cosmetics, vitamins-- that a lot of doctors never even think of.

Check out Nini's newbie kit-- it's at Open Original Shared Link

She has loads of helpful info on what to do to be truly gluten free. Because if it is Celiac, you do have to be really strict to reap the benefits of the diet.

Leah

[Helena]

Thanks for the info! I haven't really checked into ingredients of cosmetics, the oats I was having occasionally would be contaminated . . . and the millet I eat probably is too. If I can't eat this brand anymore, I don't know what I'll do----Bob's Red Mill products are not safe for people with tree nut allergies (there's a possibility of cross contamination).

I really can't have quinoa, buckwheat, amaranth, bean/legume flours, corn flour, potato flour--believe it or not, I'm allergic to it all (and the legumes, corn, potato have been confirmed by allergy testing). So the nut-free millet is a staple for me. . . But I guess I'll cross this bridge when it comes . . .

Lisa

[Guest nini]

Lisa, I don't think you need to put yourself through the biopsy. Regardless of if it's Celiac or not, you know you have multiple food allergies that you need to avoid. If you are truly eliminating all of your allergens and then eliminate gluten as well, you should notice an improvement to your symptoms. It really doesn't matter if it's truly celiac or an intolerance. Are you keeping a food journal?

Eliminate completely ALL known allergens, make a list of those foods that you THINK you can have and focus on that. Maybe don't go completely gluten-free yet. Try eliminating other potential allergens, keep track of anything and everything that goes into your mouth, on your skin, in your environment. Keep a detailed journal and look for any patterns to emerge with your symptoms.

It may be celiac, it may not be, but I think YOU are the best person to determine what you can or can't eat (with the help of your allergist of course)... if you've been eating a low gluten diet (which it sounds like you have) then any test results would be skewed anyway. They say you can redamage your intestines to get an accurate biopsy but why the heck would you want to do that? I don't advise it. I think it's stupid. (I don't think you are stupid... I think the medical standard of waiting until so much damage is done that the patient is nearly dying is stupid)

Anyway, You have way more at stake than your Dr. does. Your allergist can help you to know what you may need to avoid, but it's up to you to determine if their are any other intolerances that are affecting your health. The only way to do this is by taking charge of your diet and keeping a food journal. Good luck with it and feel free to ask any questions, most of us are just off gluten, but there are quite a few with multiple food intolerances that can help you find your way.

[Helena]

Hi Nini,

You raise some good points. My mom entirely agrees with you--she just thinks I should avoid gluten and forget about the biopsy (she is worried that I could have an adverse drug reaction or something). And actually, at first the GI specialist told me that he thought that I had a gluten intolerance if not celiac and questioned whether the test would be necessary as I'm not eating gluten anyways. But now that the blood test is positive he seems pretty keen on doing the biopsy.

I've been mulling over the issue----I guess where it would make the difference is if I *don't* have celiac I would still eat products that are produced in a plant that processes wheat. I'd prefer not to, but because I have so many allergies, I have to pick and choose. It's virtually impossible for me to find things that are guaranteed allergen-free without a risk of cross-contamination. I've never had a life-threatening reaction to wheat, and while I will not eat anything with wheat as an ingredient, I don't worry as much about cross-contamination with wheat as I do for other things. From what I'm reading here, that would have to change if I do have celiac even if I don't have symptoms with the wheat-contaminated millet.

Also, there are other advantages to having a diagnosis. Doctors tend to think that people with multiple food allergies have psychosomatic reactions. People who go into anaphylactic shock are under suspicion for developing eating disorders and food aversions from the trauma of the reaction. I feel that if I'm ever in a situation where my diet is not under my control (say, in a hospital) I had better make sure that all my health issues are documented so that they don't dismiss my concerns.

As far as allergies are concerned, I've spent the past 2 years paying very close attention to my diet. My allergist put me on an elimination diet for awhile, and I added foods back in gradually.

I'm never going to be able to completely avoid all allergens. There are lots of environmental allergens and chemical sensitivities that are unavaoidable.

There are some questionable things that I still eat---for example, I still eat a few products with corn-derived additives (though I have an allergy to corn) I *could* do a better job however at avoiding cosmetic products with questionable ingredients.

I do notice a difference when I'm off gluten----there was a window of time when I think I had my diet sorted out. It's funny though--I notice a biggest difference when I eat oats. My GI symptoms are more pronounced, I feel tired, I get acid reflux. I would have thought that barley would have more gluten and would cause a more noticeable reaction. But maybe there is more wheat contamination with oats than there is with barley.

Feel free to argue any of my points--I appreciate the opportunity to discuss all of this.

And your website is very helpful--thanks!

Lisa

[CarlaB]

Helena, I just skimmed over this, but read your first post, so I may be repeating what someone else said.

I went on a gluten-challenge for six weeks after three years mostly wheat-free and six months mostly gluten-free. They found no damage in the biopsy, and I felt like garbage the whole six weeks. I would not recommend what I went through to anyone.

If you do need a test besides a dietary response, which my doc (ob/gyn) thinks is sufficient, you can always go to a place like Enterolab. As it ends up, I'm a very sensitive non-celiac gluten-intolerant. I get sick like a celiac, but have the genes for gluten intolerance.

[Helena]

Thanks for your input. I'll think about it. It's just such a hard decision!