If You're Following The Diet, But Still Having Symptoms . .

[tex]

Hi All,

If you've been carefully following the diet, long enough, and you're still having symptoms, consider this quote, from the research article at the following link:

METHODS:

Patients were identified who had been systematically evaluated for NCD between January 1997, and May 2001. Patient records and small bowel biopsy results were reviewed.

RESULTS:

A total of 55 patients were referred with a presumed diagnosis of NCD. Six did not have celiac disease and had other diseases responsible for their symptoms. Diarrhea, abdominal pain, and weight loss were the most common reasons for evaluation in cases of NCD, whereas weight loss, steatorrhea, and diarrhea were the most common presenting features of RS (nine patients). Of the 49 patients with celiac disease, 25 were identified as having gluten contamination. Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue.

CONCLUSIONS:

Based on this study, we conclude the following: 1) gluten contamination is the leading reason for NCD; 2) of NCD cases, 18% are due to RS; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of RS is made.

http://www.ncbi.nlm.nih.gov/pubmed/12190170

NCD, stands for Non-responsive Celiac Disease, which is usually assumed to be Refractory Sprue, (RS). In refractory sprue, patients who eat a meticulous GF diet, are still not able to achieve remission. Note that almost half of the patients who were not responsive to the diet, were found to actually be ingesting enough gluten to cause their symptoms. If that many patients can't totally eliminate gluten from their diet, imagine how much harder it is to eliminate several types of food from the diet, as is usually the case with MC.

Also, note that about 11% of the group were misdiagnosed, to begin with. 18% of the group were found to "actually" be refractory. Since Dr. Fine's research shows that most celiacs who are refractory to the diet, actually have MC, I wonder if that statistic from the group is truly accurate.

Tex

[Gloria]

Interesting study. We recently replaced our dishwasher because we noticed that dishes still had a film on them after washing and rinsing. I was having to rewash quite a few of the dishes. DH still eats gluten and all other foods that I've eliminated, so who knows how much contamination I was still getting.

The dishes don't have a film now that we've installed a new dishwasher.

Gloria

[tex]

Hmmmmm. It should be interesting to see if you can tell any difference in sensitivities.

Tex

[Bifcus16]

Gloria,

How do you cope with cross contamination?

DH still insists on having his crusty bread or toast on weekends, and the crumbs go everywhere. He can't see it, of course, but I struggle to find a way to be sure I am keeping it away from me.

The obvious answer is for him to give it up, but he needs to come to that decision by himself - me nagging will only build resistance.

I rely on the dishwasher to do a decent job for me - but really struggle with wiping down benches and the table.

Lyn

[JLH]

I have to keep reminding my DH to use a plate for his bread (toast) not a paper towel......

There's no way on earth he would voluntarily give up gluten unless he got MC.

Today at the vet's office, he had to have chocolate.

[Gloria]

I do my best to wipe things down, as you probably do. We bought a new 4-slice toaster, but DH put his bread in my side once already. Sigh. It's hard, that's for sure. Sometimes I'll make my sandwich on a plate instead of on the ceramic plate on the counter.

I don't ever expect that DH will give up his gluten, soy or dairy. It's particularly hard when he has eggs for breakfast, but I'm getting better at ignoring it. It's like I have a switch in me that allows me to turn off the desire for the forbidden food.

Gloria

[Gabes-Apg]

how long before that switch kicks in.....

I was fine for the first month but now there are foods that i am really missing. At the beach the other day there were kids walking around with ice creams..... i started to get a bit angry.... I wanted an ice cream......

it has taught me that i need to take allowable treats with me everywhere .... so i dont feel like i am missing out.

[Matthew]

Ahh the switch. Letting go of all those foods that we were so comfortable with. It takes a while and then happens when you are thinking about something else. And then realizing you are better off without.

The French poet Anatole France said:

All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

It works for me.

To your continued recovery.

Love

Matthew

[Gloria]

I agree with Matthew - it takes a while to reach the point where you cease to long for your forbidden foods. I initially convinced myself that I could continue to eat mostly the same by finding adequate substitutions. I think most here can do that and I was able to for a long time. If you can eat soy, you also have many other options.

I'm not sure what is available to you in Australia, but they probably have a variety of substitutions. Some of us substitute sorbet for ice cream, for example. In the U.S., SO Delicious makes a terrific coconut ice cream. I can't eat it, but I haven't given up. I can eat coconut and plan on making my own ice cream when I'm off my low-sugar diet. Right now, the ice cream switch is turned off.

It's also helpful to not be hungry when you're around the foods that are off-limits. This can be hard in a restaurant when your spouse is eating the dinner rolls, butter and salad - and you're starving. I have occasionally brought my own GF bread and ghee. Matthew and others mentioned that they will eat prior to going to a dinner party. I've brought my own back-up meals to dinner parties in case I can't eat what is served.

It took 2 1/2 years before I let DH bring our favorite pizza home to eat. I can't sit with him while he eats it, but at least I can be in the house and smell the aroma without terrible longing. At Christmas, DH made his chocolate candies and the smell of melted chocolate was wafting through the air. I wasn't eating any chocolate at the time and it was very hard. But somehow I got through it, one day at a time.

Gloria

[Gabes-Apg]

I like that saying Matthew - thanks.

funny enough, I was hunting and gathering my special ingredients last night (here in Australia i have to go to three different shops as each of them have different ranges of gluten free/dairy free type foods) at the check out all my items were gluten free/dairy free food items, which are clearly marked as all of them have big gluten free/ dairy free identifiyers on the items.
the lady behind me said to me "oh my goodness can you not eat gluten or dairy"
and i replied thats true and she said "how do you survive?" and i replied "well meat and veges and fruit are all gluten free dairy free (not wanting to even mention the issue with intolerances to certain vegetables or fruit and confuse the hell out of her!)
everyone has become used to prepared/processed foods.

as per your saying - at the moment i am grieving the eating life i used to have as I transition to the new eating style type of life

[Bifcus16]

I never notice that switch flicking, it just happens. It happens when I have gone on long weight loss diets as well - but then it flicks back easily when the diet ends. sigh.

When I first gave up dairy and then gluten, I would overdose on replacement products - like the GF/DF equivalents of TimTam biscuits. Grief response. A whole packet a day is not good for the figure. After a while I got over that. Now a packet lasts two or three days

The hunger thing is definitely worth paying attention to. So much harder when you are hungry, thirsty, tired. Not willing to put in the effort to find something safe. Desiring the emotional comfort of food. The boy scout motto "Be prepared" applies here.

Grief is a normal healthy process to go through when we change our lifestyle. But it is definitely easier when the switch flicks.

wrt to the supermarket thing - it amazes me how people will just turn off at the mere suggestion of doing without gluten. You would swear you had suggested they cut their own limbs off. They just can't comprehend how anyone could live this way. Even if they show classic symptoms and share DNA. That stuff is addictive.


Lyn

[Gabes-Apg]

I can live without wheat and yeast based bread.... I am more upset that i cant have lindt chocolate!!

Maybe that is a topic for a future poll.... what food item are you missing the most!!

[tex]

Gabes,

Regarding chocolate, Karen, (originally moremuscle, but now sleeponit), did a lot of detective work, after she was sick for a long period, due to undeclared soy lecithin on the label of Lindt chocolate that she ate every day. She tracked down the problem by comparing the German label with the U.S. label, and she found that the German label listed soy lecithin as an ingredient, while the U.S. label did not, (for the same product). Eventually, she found a substitute. You might be interested in this old thread, from over 4 years ago:

http://www.perskyfarms.com/phpBB2/viewt ... +chocolate

Tex

[Bifcus16]

I actually haven't had a problem with Lindt, but I can eat soy. I only eat the 85% Lindt. Their website claims they state allergens and potential allergens on the label. I had read it has undeclared barley malt too, so I try to avoid it.

However, I recently bought the best chocolate ever. It is cocoa nibs, which are crushed and rolled in pure chocolate and then lightly coated in cane syrup. They are little tiny crunchy pieces about the size of a couple of rice grains stuck together and they are amazing for us dark chocolate lovers. Only a hint of sweetness. DH reckons they are 'dangerous' - too easy to eat too many and destroy your taste for commercial chocolate. Found their website, although the package they show looks a little different to what I have, the blurb is the same. http://www.navitasnaturals.com/products ... sweet.html

Lyn

[MaggieRedwings]

Morning All,

The longer I have been on the GF diet and with all of my intolerances, the more I have eliminated special store-bought GF products. I have just learned to live without. However, with being a vegan for more than 30 years and then having to go back to fish and meat was a real adjustment. I just settled with my God and explained to him that the doctors said I had to since soy was not a protein alternative. Each day it gets a bit better.

Love, Maggie