Why Am I Getting Worse?

[Nancym]

This is really odd. I have been gluten free since September. I went dairy free on 1/1/06 and my chronic semi-diarrhea has gotten worse! I've really clamped down on my diet. I'm just eating meat, squash, lettuce, chicken, oil, vinegar, almonds, coconut milk yogurt, figs and dates. I'm becoming suspicious of the almonds so I won't eat any more of them.

I had a period after going gluten-free at first where I improved dramatically! Then I started sliding downhill after a few weeks.

[Rachel--24]

Nancy,

Did you change your diet alot or are you basically eating the same minus the dairy? Could it be your body adjusting to a new diet? Maybe someone else knows more cuz I never had "D" as a symptom so I'm just taking a guess.

[sillyyak]

I have had D as a symptom. It is horrible! Sometimes you have to get worse before you get better .. I think... this is what I am learning because otherwise I will drive myself crazy thinking I have refractory sprue

My diet is very limited right now - plain chicken, boiled potato, banana and some pedialtye electrolyte.

[Lisa]

Nancy,

I also cannot pinpoint your problems with out getting specific about the brands that you are using.

I have been "attempting" to be totally gluten free since August. It is terrible painstaking job. I know your frustrations. Believe me, I have thrown out a couple of good jeans in disgust.

When I get glutened, I go back to the basics that I am positive that it is gluten free. I am starting to branch out in my home cooking and my family is eating well. Gumbo over rice tonight.

May sure that you study everthing that you put in your mouth, check things at work or cross contamination at home. Check you shampoos, face soap, lipstick....anything that can get into your mouth. For instance, where I work part-time I handle beer and scones/mix, then I lick my hands to get the tissue into the dressed bags. I feel that the little gluten I get, the little effect, the more gluten I get the more severe reaction that I get. And the longer that I stay gluten free the longer it takes to get a reaction to being glutened.

I hope that this will help and if you need to know some specific brands of food or toiletries, please write me back as other will help as well.

Be patient, it takes time

Lisa B.

[CeliaCruz]

I went dairy free on 1/1/06 and my chronic semi-diarrhea has gotten worse! I've really clamped down on my diet. I'm just eating meat, squash, lettuce, chicken, oil, vinegar, almonds, coconut milk yogurt, figs and dates. I'm becoming suspicious of the almonds so I won't eat any more of them.

Any medications? Vitamins? Since you describe having "chronic semi-diarrhea" instead of individual episodes of diarrhea, I'm thinking that whatever is making you sick is something you are eating/taking/using on a regular basis...as opposed to the occasional mistake or cross-contamination here and there. Just a thought.

As far as eliminating dairy goes, was there a specific reason for that? Dairy is a "binding" food and now that you have cut it, it makes sense that the diarrhea might have increased as a result.

And watch out for vinegar. It's supposed to be gluten-free because it's distilled, but it still bothers some people if it's grain vinegar.

I had a period after going gluten-free at first where I improved dramatically! Then I started sliding downhill after a few weeks.

That seems to be a pretty universal problem for everyone, doesn't it? Our bodies get more sensitive the "better" we are. Drives me crazy!

[Nancym]

Thanks everyone! I eliminated milk products because Enterolabs says I'm casein intolerant too. I've really closed my diet down to the few items I mentioned, all home cooked with whole spices I even ground myself. Vinegar is red wine, so it should be ok. Only think that isn't home cooked are a few frozen veggies, but the ingredient list is fine, some nut-butters (only contain nuts).

I do take supplements but I've checked them closely and they are all ok, except one antihistamine might have had lactose, so I found the dye-free version yesterday and switch to that.

I'm thinking that my intestines are just really messed up and EVERYTHING seems to be bugging them. Maybe I should eat only meat for a few days and see if that clears this up.

[aikiducky]

Did you always eat lettuce? Or is it something you recently added? Lettuce goes right through me, for some reason, it just gives me instant D even when I'm otherwise fine. I have a vague recollection of once reading that there would be a micro-organism living on lettuce that most people are just fine with but then some people aren't and that gives them D. But if you've always eaten lettuce it would be unlikely I guess. And I don't know where I read it, I might have just dreamt it for all I know. Just reaching at straws for you...

Pauliina

[Merika]

Hi Nancy,

I too got worse before better, and I had the same dramatic initial improvement. In fact, I never had D or C eating gluten, but things sure got funky from about 3-9 mos post-gluten-free. I'm guessing on the time frame, as it's been about 2 yrs gluten-free for me now, and things are getting better, and the funky poops are gone, lol. I think my body just started to freak after being so sick AND so accustomed to eating gluten.

Hth,

Merika

[elisabet]

Hi Nancy,

red meat is really hard to digest ,eliminate red meat for at least 3 weeks to see the resault.red meat is on forbiden list for many outoimmune conditions.

best of luck

[loraleena]

Thanks everyone! I eliminated milk products because Enterolabs says I'm casein intolerant too. I've really closed my diet down to the few items I mentioned, all home cooked with whole spices I even ground myself. Vinegar is red wine, so it should be ok. Only think that isn't home cooked are a few frozen veggies, but the ingredient list is fine, some nut-butters (only contain nuts).

I do take supplements but I've checked them closely and they are all ok, except one antihistamine might have had lactose, so I found the dye-free version yesterday and switch to that.

I'm thinking that my intestines are just really messed up and EVERYTHING seems to be bugging them. Maybe I should eat only meat for a few days and see if that clears this up.

Have you been checked for parasites or yeast overgrowth? Our bodies are set up for this due to such intestinal distress.

[darkangel]

Hi Nancy,

red meat is really hard to digest ,eliminate red meat for at least 3 weeks to see the resault.red meat is on forbiden list for many outoimmune conditions.

best of luck

I wonder if this is what got me. I made a Crockpot full of homemade beef stew with all natural ingredients. Ate a bowl for lunch several days in a row... now I'm sick again, too. Mornings are worst for me. Usually, by mid-afternoon things have calmed down. It's discouraging and it's hard to work when you're in pain and in and out of the bathroom so much.

[Rusla]

In beef there are numerous dye's and growth hormones. I was allergic to those well over 20 years ago and quit eating beef. One because of that and two because of the fact I didn't care for it either. I used to get even more sick from the beef. The other thing is cattle eat wheat and not knowing what the base in the dye's or the quick grow hormones are I would be inclined to leave the beef alone and see if that helps.

I only eat seafood or range free, no antibiotics or hormones, corn fed poultry also. I have noticed feeling better when I switched from store chicken to the range free.

Now for hand creams and shampoos not all of the list if they have wheat in these items and they are not required yet to list all ingredients. I have had to phone and email numerous companies to find out the ingredients.

[Nancym]

I'm going to give the SCD diet a try. Just got the book. The theory is that people with severe chronic intestinal issues end up with bacteria that is out-of-balance. So you eat food with only mono-sacchrides for awhile to feed the good guys and starve the bad guys. I've heard a lot of rave reviews from people with severe intestinal issues, so I shall try it!

[gabby]

Call the manufacturers to make sure the food you are eating is Gluten Free. It is not enough to ask them if they add gluten...they have to say it is gluten free...otherwise it isn't.

vinegar, almonds, coconut milk yogurt, figs and dates, nut butters

All the above can contain gluten.

-There's a raging debate on gluten in vinegar. check with the producer.

-almonds: unless they are purchased raw from a reputable store (where there's no chance of cross-contamination from dirty scoops), and you roast them yourself, then they can have gluten on them. Many dry-roasted nuts, smoked nuts and flavoured nuts contain wheat starch to prevent them from sticking. Check with the manufacturer.

-nut butters: I also made this mistake. The ingredients said: roasted nuts. But they didn't say what they may have added to the nuts while roasting. I called the manufacturer and they could not confirm that it was gluten-free. They said they bought the roasted nuts elsewhere, and just did the grinding on the premesis.

-figs and dates: again, these things (and many dried fruits like raisins, etc) are often coated with a wheat starch to prevent them from clumping and sticking together. You've got to call the producer and get their gluten-free info.

One thing I have learned myself is this: if it doesn't say specifically Gluten Free, then I don't go near it.

If the producer doesn't know...then stay away from the product.

Helpful alternatives:

-instead of vinegar, use freshly squeezed lemon juice

-buy raw almonds and roast your own (they are great this way!)

-buy a grinder (cuisinart makes a great one for around $39) and grind your own nut butters. Awesome stuff.

-instead of dried fruit, eat fresh fruit. along with the gluten danger, many dried fruits are heavily laced with sulphites

hope this helps,

Gabby

A note on lettuce. I remembered reading that you were taking an anti-histamine. If you've got allergies or problems with grasses, then hold onto your hat because some lettuces are actually part of the grass family! yep. I had to learn that the hard way too. The ones to look out for are things like Boston, Bibb, leaf lettuce (you know, those soft, scrumptious ones.).

The one to stick with through your 'work it out' phase is Romaine lettuce. This one should not bother your allergies or your digestive system. it is extraordinarily high in fibre, and has lots of calcium and other important vitamins and minerals.

Here's something I like to do with lettuce:

I take my handy-dandy Cuisinart grinder/chopper. I add some plain cooked chicken meat. then some almonds or walnuts, a bit of lemon juice, a bit of olive oil, and a couple large leafs of Romaine lettuce. I whiz it up into a paste and either use it as a spread, or ontop of my salad. Or use more romaine lettuce leaves as wraps and use the chicken filling inside. yum.

[LLCoolJD]

I've been on the gluten-free diet for about one year now, and it's been a bumpy road. Like you, I got better quite soon after starting the diet, but problems reared their ugly head after a while. This past August I had a few wheat-free protein shakes that must've been malted ("natural flavoring"). They completely ruined me for about a month (Now I get VitaminWorld-brand protein and creatine - it's labeled gluten-free, among other things). Anyway, for at least a month my "digestive tract health" (to put it politely) was awful. For two weeks of that month it got bad enough to get me really worried. Thankfully, I recovered over time, and have never had another accidental gluten-ingestion on par with that.

The gluten-free diet can still be painful, but it is getting a bit easier. There is a large repertoire of foods out there for us. I've thankfully never had to endure rehabilitation therapy, but I'd compare going onto the gluten-free diet as the dietary equivalent to those unfortunate people who have to learn how to walk all over again. It's slow and painful, but eventually the way becomes second nature and you adapt.