Weak Positive, gluten-free For 2 Months, Getting Worse?

[celiac1]

Hello to you all. Wondering if you could offer advice. I tested 'weak positive' in Nov. (antibodies 10 and up considered celiac, mine were 9.8). Doc asked if I wanted an endoscopy or to try going gluten-free for 3 mos and re-test. So I'm doing the gluten-free route, but now feel worse than ever. Tummy is now so big that I'm embarrassed to leave the house, very tired, constipation is worse, backache, fluid retention etc. Don't eat meat or dairy or soy (other than gluten-free soy sauce the odd time). In fact, I'm now eating less than 800 cals a day but still ballooning up. Very frightening to be honest.

Have I made a mistake going gluten-free considering I'm just a weak positive? I have been good about not eating gluten, although I think there might have been some cross-contamination a couple of times. But nothing serious.

Anybody have any ideas on how to end the misery? Not sure if anyone's posted this before, but I can seriously say that felt better before going gluten-free - and I wasn't feeling great then ...

Thanks so much. Apologies if this is a somewhat repetitive post.

[CarlaB]

Sorry you're feeling so bad. Your doctor is wrong ... you can't test after you've been gluten-free without going back on gluten for a few MONTHS. This is because the intestine heals, so if you do a biopsy, which has a false negative rate to begin with, there will be no damage because it will be healed.

There is no such thing as minor CC (cross-contamination). If you're getting even a little gluten, you will still have problems. Think of the flu ... you can be exposed to 100 people with the flu, or just one, either way your immune system will react.

Do you take probiotics? Sounds like you could possibly have candida.

[celiac1]

Sorry you're feeling so bad. Your doctor is wrong ... you can't test after you've been gluten-free without going back on gluten for a few MONTHS. This is because the intestine heals, so if you do a biopsy, which has a false negative rate to begin with, there will be no damage because it will be healed.

There is no such thing as minor CC (cross-contamination). If you're getting even a little gluten, you will still have problems. Think of the flu ... you can be exposed to 100 people with the flu, or just one, either way your immune system will react.

Do you take probiotics? Sounds like you could possibly have candida.

Thanks very much for your reply. I think the doc's idea was to see if the antibody level was back down to well below a positive result with the re-testing after being gluten-free. He said that would then confirm that gluten was a problem. He gave me the option of doing that or doing the biopsy because the result was only 'weak-positive".

And yeah, the cross-contamination thing is a puzzle to me. I'm working on it. Just surprising to find out that after years of having a pasta/bread/veggie based diet, I would now react to a few crumbs. hard to believe and all that.

No probiotics. Thought before I dropped a ton of dough on supplementation I should allow some healing in the villi?

Thank you again.

[CarlaB]

The probiotics will actually help. They are very good for your intestines. You might Google candida ... I think it can contribute to bloating as you describe.

Your doctor is right then if he's doing it like that. He just couldn't do the biopsy after you're gluten-free.

[jayhawkmom]

I'm sorry you are feeling so poorly.

May I ask... do you know which antibodies it was that were considered a weak positive?

800 calories a day isn't enough to fuel a 15 month old toddler, much less a full grown adult. I'm wondering if part of the reason you are so miserable is because you are starving! It does sound like your reactions are becoming more severe after cross contaminations, which is leading you to have more digestive problems, which lead you to not be consuming enough calories to survive.

I am obviously not as experienced with Celiac as most here... but I know enough about nutrition to know that when you aren't even consuming enough calories to stay awake during the day.... you'll feel pretty darn miserable. =(

It's nothing but my humble opinion, but I think you need to eat nothing but fresh-whole foods for a while... to give yourself some nutrition, and allow some healing. Stay away from any and everything that could have a cross contamination issue.

I really hope you feel better, soon.

[Yenni]

I am sorry you feel so bad.

Cross contamination comes to mind here. Are you using the same Teflon pans as before and plastic cutting board. What about shampoo, toothpaste, soaps? Are they gluten free? Are you eating any mediactions that has gluten in them? Maybe you are missing something.

Have you heard of EnteroLab? Maybe getting tests done by them would help you with possibly other intolerances that is a problem.

Just some thoughts.

I really hope you'll figure it out and get better soon.

[celiac1]

Thank you all very much - as I've read many of the topics I marvel at how kind everyone is to share their time and knowledge.

In answer to a couple of questions, yes I am still using the same pans. Haven't checked shampoo etc. But then again, how much gluten could you possibly ingest by using the wrong shampoo? or am I being rather naive?

And yeah, probably not getting enough nutrition either - but it's hard to know what to eat when everything makes you feel worse. That's why I started thinking maybe being 'weak-positive' wasn't a good enough reason to try and go gluten-free, and that perhaps the change in diet was wreaking havoc.

And thanks for the Entrolab suggestion - I've seen posts about it but have no idea what it is. Is it available for order into Canada? And if so, how does one do that? Does it also give you other possible food allergies?

I find there's much to learn about this whole thing.

[hathor]

A bunch of thoughts --

First, please give yourself some more calories. I don't think you are ballooning up because of gaining fat. Something you are eating is causing this and you need to figure out what. In the meantime your body needs fuel for everyday life. Also, you may be eating so little you don't have enough to make things flow through your system.

Since you cut out the gluten are you eating more of anything? Any foods you eat about every day?

Really folks can have intolerance reactions to all sorts of things. You may need to start keeping a diet journal if you don't already and see what you react to. If worse comes to worse, do an elimination diet (google and you'll find people who explain it). It might be corn, egg, fructose, legumes, nightshades, any number of possibilities. You start out on a diet where foods commonly reacted to are omitted, limiting yourself to a few very safe foods (the sites will tell you what these are). You do that until your symptoms disappear. Then you add a new food challenge and wait for a reaction. And slowly you build up a list of your dietary do's and don'ts. It takes time, but you might save time in the long run if you have lots of sensitivities.

Since your calorie count is so low, perchance are you having any food, drink, gum or the like with sorbitol, sometimes used to make things sugar-free? Some people react to that with bloating. I think this may be true of other artificial sweeteners as well, although I don't remember for sure.

I suppose you could have allergy testing of your blood. I've heard that sometimes people don't react to things they create antibodies to or do react to things that don't show antibodies. But this might give you some ideas as to how to fine tune your diet. The ultimate test is whether your body reacts adversely or not. BTW I don't think anybody's body reacts with bloating and the like from NOT having gluten, if that is your concern.

Is your fiber intake sufficient? If cutting out gluten reduced your fiber it could explain your symptoms.

Probiotics are a good idea, as already mentioned.

Someone on another board mentioned feeling worse on a gluten-free diet before she felt better. I don't know how common this is because I am even newer to this than you are.

[hathor]

www.enterolab.com

[hathor]

Are you using the same Teflon pans as before and plastic cutting board.

Something new for me to consider (I'm also new to all this). Is the concern only with nonstick cookware?

Why is there a problem with plastic cutting boards? Wouldn't washing in the dishwasher eliminate any gluten?

Anything else in my kitchen to be concerned with?

[CarlaB]

In answer to a couple of questions, yes I am still using the same pans. Haven't checked shampoo etc. But then again, how much gluten could you possibly ingest by using the wrong shampoo? or am I being rather naive?

Do you know what shampoo tastes like? I do! Plus, you touch your hair, then you eat, etc.

If your pots and pans are stainless steel, you're okay. It's teflon and cast iron that holds the gluten. So do wooden spoons. And, yes, you can get sick from a wooden spoon -- I have.

I'd keep working on becoming 100% gluten-free. I'd start taking probiotics. I'd also eat natural foods -- meat, eggs, veggies, potatoes, and rice. I'd eliminate sugar, in case the bloating is from candida.

[hathor]

And, yes, you can get sick from a wooden spoon -- I have.

Really? Even if carefully washed? I thought I'd spent enough on my inaugural visit to the Gluten-Free Mall. Now I need to replace kitchen things too

[Yenni]

I think EnteroLab does testing all over the world actually. So Canada would be fine I believe. They test for gluten, casein, soy, egg and yeast so far. I guess they are working on testing more in the future.

I read on here that 15% of the gluten used in Teflon and plastic stays after they are washed. It gets cooked into Teflon. Using the same Teflon pan kept on makiing me sick until I got a new one. The plastic cutting boards get cuts in the that gluten can hide in. I had no idea about wood being a problem too, but I don't have any so I have been safe there.

Don't use the toaster if you'va had gluten in it and I was told to always clean the microwave oven before use if it is used with gluten. I live in a family that eats a lot of gluten normally so I got my own microwave oven now.

In general glass is good to use. It gets clean.

Old pans in steel can also be bad if they have spots and are well used, so I have read anyways.

It is very common with wheat and soy in shampoo and conditioners. I have gotten sick from getting shampoo in my mouth when I rinsed it out so I use gluten and soy free shampoo and conditioner now.

Crest toothpast is supposed to be gluten free, I use it to be safe.

I kept on eating Vitamins with Soy for the longest time. I missed it completely. It made a big difference once I stopped. Crazy how sensitive one can be.

Yeah, so try eat things that are naturally gluten free like veggies and fruits. Unprocessed meat. Like CarlaB just mentioned above me here.

[bluejeangirl]

If you have been eating virtually nothing but vegetables and fruit for three years, you almost certainly have a protein deficiency. Protein deficiency causes coldness, fluid accumulation, fatigue and a lack of hormones and enzymes. Eating more protein (fish, eggs, lean meat, pulses, nuts, yoghurt) will help you lose some of your excess fluid, and you will then start to lose weight. Your bloating is probably due to a lack of digestive enzymes caused by the protein deficiency. You are so depleted of enzymes that you can only digest small amounts of food; the rest of the food sits around in your intestine, irritating it and causing swelling. So for the time being you should eat little and often. Ask in your health food shop for some digestive aids like HCl pepsin and bromelain, and use these until your own digestion improves.

Gail

[CarlaB]

Really? Even if carefully washed? I thought I'd spent enough on my inaugural visit to the Gluten-Free Mall. Now I need to replace kitchen things too

Yes! You know how wooden spoons never look like they did when they were new? They absorb the foods you cook with them, including gluten.

If you focus on foods that are naturally gluten-free, you won't spend as much on food. The only processed gluten-free foods I buy are bread, waffles, pasta, and cookies (for my daughter). Other than that, we pretty much eat things that are naturally gluten-free.

[celiac1]

The idea about the fresh whole food is great. But that's all I eat. Used to do the odd bit of cup-o-soup or something, but other than that it's been fresh or cooked veggies, and back in the better days pasta or bread. No added fats. And no dairy cause I finally figured out it was causing problems (that's what triggered the celiac test by the doc). And when you've been a vegetarian for 20 odd years, the idea of eating meat again isn't terribly palatable.

What's the possible problem with soy products? I was eating the soy burgers etc about a year ago when some of the syptoms acted up pretty bad, but now after the testing I had assumed that was because the soy veggie products mostly list wheat gluten as their 2nd or 3rd ingredient. Does one have to avoid other soy products as well? Even gluten-free soy sauce?

And I guess the idea is to get new pots, eh? And I'll start making inquiries about shampoos etc.

Is it normal to feel a little sorry for yourself?

Thank you very much again for your kindness.

[CarlaB]

Mourn the loss of gluten ... it's normal. Then get down to business with learning the new diet. It really becomes second nature.

Soy bothers some and doesn't bother others. I can eat soy and dairy myself, but others around here can't. It's a separate intolerance from gluten.

If you also had to leave out dairy, be sure you're getting enough protein. gluten-free and vegetarian will be hard. Do you eat eggs? What about fish?

[hathor]

OK, you convinced me!

[CarlaB]

OK, you convinced me!

Of what?

[hathor]

I guess it is normal to feel sorry for yourself. I do

I've given myself at most a week from when I got the Enterolab results to buck up. So I've got a little less than a day left to bemoan my fate ...

About soy -- some of what I've been reading is that it can be similar to both gluten and casein in terms of the effect it has on the small intestine. Not for everybody obviously, but for some. I've been following a basically vegan diet for years and never noticed a reaction to soy. But my lab work comes back and shows I have been creating antibodies to the stuff. So it is coming out.

You could always get tested or take soy out, then challenge.

Even if soy doesn't bother you, recently I was reading about how isolated soy proteins are not good for you. If you or anyone else is interested, I can find the link. I used to eat a lot of fake meats and cheeses before I read that. Now I'm not supposed to eat any soy so I guess the issue is moot.

There are well-populated Yahoo groups for both vegetarian and vegan folk that are gluten-free. There's also a book described in the Gluten-Free Mall. Actually, getting protein really isn't a problem. My opinion, anyway I can give you a link about that too if you want. My diet hasn't changed drastically since I went gluten-free. I've found gluten-free bread and pasta and cut out barley and bulgur, using nongluten grains instead. That's about it.

So if it makes you feel any better, you aren't alone.