Elimination Diet

[India]

Hi all,

I've been trying out a self-imposed elimination diet for four days and I'm feeling really rough. I'm eating turkey, spring greens, sweet potato, occasional well-cooked beets and olive oil. Also rice until yesterday but I thought that might be a problem so I cut it out. Today was still awful though. Oh, and um... I've been having soda because it's the only thing that keeps my energy up and helps with horrible trapped gas. Dumb, I know, but soda has been keeping me going for months (2-3 cans per day). I've given it up for several periods of time but can't think how I'd cope without the caffeine right now.

I was diagnosed by biopsy in January and I've been gluten free since then. I've seen very little improvement in my symptoms, which are mainly major C, bloatedness/sluggishness, brain fog etc and, lately, this terrible fatigue. It's gotten even worse this week since going on the elimination diet.

I'm pretty sure corn and soy are a problem for me but there must be other foods. I tried millet and teff but they made me feel wretched (so much for all those great alternative grains). I gave up dairy almost two weeks ago. I'm just about at the end of my tether. I tried the diet this week as I have a few days off work. I was just about coping before but I don't know how I can go back to work in this state. I'm so out of it.

I'm doing the diet without medical supervision because my doctor, gastroenterologist and dietician are pretty much only interested in whether I eat gluten or not. I'm in the UK and I have to see whoever my GP refers me to. By this point, I'm beginning to lose interest in eating, which isn't great because I'm pretty slim even with the raging appetite I've had since going gluten-free. Part of me thinks I should stick this out as it's only been a few days but part of me thinks I should stop messing around with my body. I've done so much reading but I am completely at a loss.

I've been through a lot of health problems in the last few years but nothing has made me feel this low and helpless. My doctor is convinced I'm depressed but I don't think so. I have lots of motivation to get on with my life, just no energy or focus to do it. It's like carrying a heavy veil covering my eyes... or something. I've never known anything like it.

Any advice, please? Other than to give up the sodas... I know Oh, and my house is kept gluten free, I've replaced all of the kitchenware I thought might be contaminated and I haven't eaten out for weeks.

Thanks for any help you can offer.

[India]

Sorry for the length of the above message. I should have added the the hospital asked my doctor to prescribe vitamin D and he ran the blood tests again and said I didn't need it (I think the level was 70). He also said my B12 level was fine (238, lower than the 247 when I was diagnosed) but I've ordered sublingual B12 this week because I know it would be better much higher.

Thank you

[T.H.]

So sorry you're feeling so bad! From what you said, nothing stands out hugely, but I'll see what I can contribute for your search for the answer!

1. You could be really sensitive to gluten and that's what's getting you. You were saying you've replaced your kitchen utensils and pans and such, yas? How severe have you restricted your gluten to things other than food? Gone through your cosmetics and shampoos and such to eliminate anything gluten that might touch your mouth? Any CC possibilities at home from gluten eating pets? Any construction going on near you (many things used during construction have gluten, like drywall, for ex). Some of the 'gluten free' grains can be contaminated with gluten during processing, so if you are really sensitive, some of those could have been setting you off, too. I'm a sensitive celiac and I react to most things that are supposed to be gluten-free, so it's definitely possible. The shampoo has gotten me when I rinse it off and it dripped in my mouth, the mouthwash has gotten me, the soap with gluten contaminated a plate once, best we can tell, and got me.

I've heard of people kissing someone and getting glutened. Oh, and as an aside - during a study, people had miserable reactions to gluten - felt awful - without major damage being done. I've wondered how that would translate into tests, you know? Like perhaps, as far as the tests were concerned, they would test 'gluten free,' but their bodies were still telling them that life sucked a lot, ya know?

2. I think you're on the right track on your post (following this) on ditching the soda. There's just so much stuff in it that could be potentially bad for you that I don't think your elimination diet has any real chance with that still in your diet, sad to say.

2. Re: soy and corn avoidance. Are you using iodized salt? That has corn contamination, so if you are trying to avoid corn, might be good to get some sea salt. White rice is sometimes corn contaminated too (they use a corn product to polish it, often), so it could be the rice is okay, and the corn is still the issue, possibly. Brown rice tends to be corn free, though. For your olive oil, what kind is it? Is it organic, from a reputable source? Was it processed with nuts or seeds (most oils are)? Sadly, in this recession, there have been reports of olive oil that has been tested and discovered to be soy oil with a dye and a couple things added. And if you happen to be sensitive to nuts or seeds, the oil might have enough to bother your body. Oh, also, for the corn? If you are using paper plates/paper cups, they often put corn starch in them to keep from sticking together, so it can get you there, too.

3. Have you looked at fructose malabsorption? I noticed you have a lot of foods that have higher levels of fructose in them, so that might be worth looking into to see if the foods might correlate? I don't recall that causing brain fog, but I've only researched it to a shallow level, sorry to say.

4. You could have problems with pesticides? Might help the diet to stick to organics for a couple weeks, just to make sure and rule that out a bit. Although if you are in the UK, I think it has stricter standards than we do here, so that might be less of an issue.

5. Also, it might be helpful for you to try and figure this out if you eat one set of foods for a day or two, and then switch to another set of foods for the next couple days. Not even salt or oil the same. That way, it might help narrow down the problem, if something you are eating is bothering you. You might be able to add a few foods in, too, if you did that, to see what has worked for you? Spacing stuff out has helped us trying to figure out what foods were messing with our family. We didn't eliminate much, just the 8 major allergens plus some family stuff, but it made a big difference.

6. Oh, the turkey! What kind of turkey are you eating? Whole pieces, or ground? Is it cut up at the butcher or at the factory? Does it have any retained water? If it's cut at the butcher, it can be contaminated with other meats, if you are sensitive enough. If it's ground, same potential issue. If it has retained water, that typically means it was brined in something and that's how much of the brine solution it's retaining. Which means that you might have something in there you react to, as well. Not likely, but possible (been there, done that, sigh). I ended up eating bison meat, which seems to be as 'hypoallergenic' as you can get with meats (so the hype goes). It's as low fat as chicken, but high in iron, so it's worked out well, aside from the cost. I've even been seeing small packages of it in the local grocery stores in the States, tucked away in the beef fridge section.

7. Re: grains - I react to all the grains, too, but have figured out that I don't react to 'non-grain' grains. Quinoa and amaranth are both not in the grass family with the other grains, as well as buckwheat, so they might be worth trying. You can order quinoa in bulk from ancient harvest, on-line, if that seems to work out.

So sorry this has been so bad for you! I had something similar, at least re: going gluten free and still feeling awful. I actually felt worse, couldn't believe it. But I had a great doctor who has helped me a lot. Said I was hyper-reacting to nearly everything, so we just cut my diet to the bone and I've been eating what I can, working on increasing my diet. Some tips he gave me, in case they help?

- he said celiacs tend to have more trouble with additives, preservatives, and dyes, more trouble with genetically modified food, more trouble with food allergies and sensitivities. All of these add up to bad soda pop, eh?

Wishing you the best!!

[GFinDC]

So gluten-free since Jan-2010 and still sick? You are probably right about another food intolerance then, or you are still getting some gluten somehow. Did you eliminate vitamin pills on your elimination diet?

For the soda if you can't just stop it, maybe try tapering off over a week or two. That will give your brain a chance to adjust and lessen the withdrawal affects.

You have got the right idea about eliminating things in your diet. Rice is good one to test, also the beets could be a problem. Their really is no rule that a food can't be a problem, any food can cause a reaction in us so they all have to be tested.

[lucia]

Something I've noticed in my own and other peoples' stories is that the foods we crave the most are sometimes the foods that most need to go. Seems to be one of the mysteries of our bodies.

(Both sugar and caffeine have addictive properties.)

[lucia]

Also, you do have signs of candida, which would be "fueled" (quite literally) by the sugar in soda. It could account for why your current "elimination diet" is making you feel worse. If you cut out the soda, you'd already be on an anti-candida diet. If you feel better, that would give you another clue to (hopefully) bring to your doctor, nutritionist or other member of your army of health professionals (yet none of them will help you with an elimination diet? - argh).

[India]

Hi everyone,

Thanks for all of your replies - I really appreciate your advice and support. I won't answer everything as you've given me lots of good advice. But I've cut right down on the soda today. I know it's terrible stuff but I get so tired... anyway, I'm giving it up. Again. I'm pretty sure I'm properly gluten-free but I'll keep being vigilant. I've stopped taking my vitamins, which were gluten-free, because they contained maize starch. I'm still trying to find a replacement.

I changed my elimination foods today, not least because I never want to see a sweet potato again I think I will rotate every few days. Some of the foggy feeling lifted today, which helped my mood, but it's back this evening and I feel wiped out too. I have to say that this elimination diet feels perilously close to an eating disorder.

The other thing I did today was get a last minute doctor's appointment to ask to be tested for fructose malabsorption, small intestinal bacterial overgrowth and candida. The doctor was a locum and hadn't a clue what I was talking about, but said she'd write to the gastro department I'm with. I don't expected them to take candida seriously but hopefully I'll know about the other two.

Thanks again (and good health to you all!)

Allie

[lucia]

Sounds good.

Let us know how it turns out.