queenofhearts

A sort of theoretical question for all you wonderful helpful people:

I've just this week been diagnosed with Celiac (at the age of 49) & it came as such a surprise to me because all my life it has seemed like starches were the ONLY thing I could digest easily. I was a vegetarian for many years and although I now eat fish & poultry two or three times a week, the very idea of eating beef or pork still makes me feel ill. I've always been okay with eggs & cheese & yogurt, though milk itself sometimes bothers me. (I have always loved rice too, including those rice cakes everyone seems to hate!)

When busy or stressed I've gone for weeks at a time with very little other than bread or crackers, peanut butter & fruit & veg to eat. I have to remind myself to eat protein-- have no natural appetite for it as others seem to.

Now reading some of this material I see that many people are recommending a diet with lots of protein, especially meat, & few starches of any kind. I feel sort of choked just thinking about so much meat... do you think my distaste for meat & preference for starch is some sort of cruel trick my body has played on me all these years? What is the deal? I've heard some Celiacs crave gluten-- WHY? I'm very curious & want to understand how this disease works...

If I force myself to eat meat will I start to like it? All I can think of is childhood meals when relatives would beg me to eat more meat & I was just so miserable... Ugh!

In the week since my diagnosis I've already tried lots of alternate flours (I love to bake from scratch) & I have a feeling I could be pretty happy with them after some more experimentation, but I'm beginning to think my starch preference could actually be a symptom of some kind. It's absolutely eerie how many of my "discomforts" (some of which I never even thought of as illnesses before, because "that's just the way I am") turn out to be classic Celiac symptoms.

Any thoughts?

Many thanks,

Leah

Oh, wow, thanks, this is really helpful. It looks like I will be able to recognize the "evildoers" when I see them. That's a relief!

Thanks so much,

Leah

Open Original Shared Link

hope that helps.

I think you might have to scroll up to the first post....

if you don't feel like clicking the link

Here are some common ingredeints found in cosmetics and hair care products that contain gluten:

Amp-Isostearoyl Hydrolyzed Wheat Protein

Disodium Wheatgermamido Peg-2 Sulfosuccinate

Hydrolyzed Wheat Gluten

Hydrolyzed Wheat Protein

Hydrolyzed Wheat Protein Pg-Propyl Silanetriol

Hydrolyzed Wheat Starch

Hydroxypropyltrimonium Hydrolyzed Wheat Protein

Stearyldimoniumhydroxypropyl Hydrolyzed Wheat Protein

Wheat Amino Acids

Wheat Bran Extract

Wheat Germ Extract

Wheat Germ Glycerides

Wheat Germ Oil

Wheat Germamidopropyldimonium Hydroxypropyl Hydrolyzed Wheat

Protein

Wheat Protein

Wheat (Triticum Vulgare) Bran Extract

Triticum Vulgare (Wheat) Flour Lipids

Triticum Vulgare (Wheat) Germ Extract

Triticum Vulgare (Wheat) Germ Oil

Yikes, I've just been diagnosed, just warned about the makeup issue, looked at my lipstick label & of course it's full of mysterious stuff like ethylene brasseate & tocopherol & sucrose polycottonseedate! How do you know if this stuff is derived from wheat? (Okay so I'm guessing that last one's from cottonseeds, but I couldn't resist adding that wacky name!) Is there a list of which ingredients are risky? The brand is CoverGirl Outlast, anyone use that? Or know that it's a baddie?

Baffled, (but grateful that I have someone to ask!)

Leah

Oh, Lisa, don't worry about freaking me out! It's just that there's so much new information to absorb. This is very helpful; ignorance in this case is definitely NOT bliss. I want to know ALL the sneaky stuff from the get-go! I'd be much more freaked out if after months of living without real sourdough bread & all the other baddie-goodies, I found out I was still getting sick from my %#@ing lipstick!

Thanks so much,

Leah

Leah:

You're on a good start already. I didn't mean to get you freaked out.

Here's a start: Gluten Free

Dove Shampoo, Pantene, Vidal Sassoon and others Neutrog. Shampoo.

Dove Soap, Ivory, Carress, Dial

All Crest toothpaste, Arm & Hammer, Colgate (Ithingk)

Neutrog. most make-up and lip sticks and glosses, soaps

If you have a product of Neutrog. check the website on the package and write them, and they will send the the long list of their gluten free products.

Cover Girl lipstick are very tricky, as for me....some yes, some not. That's a pain. Alot of people use Basic Essentials, that are not available for me here.

Search here for Cosmetics, you will find more than I can give you now.

It will alll work out, and in a months time, you'll be an expert.

Hang in there, Lisa

You're right-- I do feel lucky that this is something I can deal with, without drugs or surgery, just by controlling my diet. It's amazing that so many different symptoms can be traced to this one simple cause.

I'm going to track down those brownies!

Best of luck with your MIL & thanks for your good wishes.

Leah

Thank you all so much for great suggestions & moral support! I feel less lost already. What a wonderful group!

I never would have thought to go into the restaurant a day or two ahead of time, but that is a great idea-- that way when it comes to the actual meal I won't be so stressed out, nor will the chef, I hope.

Lipstick & toothpaste & soap, oh my! So much to keep track of! Does anyone happen to know if CoverGirl Outlast lipstick is safe? Colgate toothpaste? Neutrogena shampoo? Dove soap?

I'm so grateful that you all are here-- it's all so new & strange, but with such wise & generous guides I feel much less anxious & confused.

Many thanks,

Leah

Hello folks,

I'm very glad to have found this forum! I was diagnosed this week with Celiac. I'll be fifty years old next week & have had nagging symptoms for many years-- diarrhea, anemia, fatigue, migraines, heavy periods, joint pain-- but never connected the dots until this winter I had a check-up that showed elevated liver enzymes. After a retest that showed no improvement, my doctor ordered a cat scan & when nothing explanatory showed up on that referred me to a specialist. The specialist took one look at my list of symptoms & suspected Celiac immediately. Biopsy confirmed it, so here I go into Gluten-Free World! At first I was horrified at the thought of no wheat because I absolutely love to bake, but after checking out 8 gluten-free cookbooks & trying a dozen recipes or so, I think I'll survive after all! The prospect of actually feeling well again is almost hard to believe, but I'll be very happy if it works!

My most immediate issue is eating out-- next week I'll be celebrating both birthday & wedding anniversary, & frankly I'd rather have someone else do the cooking! Any tips on how to stay safe at a restaurant?

Many thanks for being here!

Leah

Hi Dana,

I was diagnosed with a biopsy. After more or less dismissing my chronic-but-not-severe diarrhea, fatigue & anemia for years as "really nothing to worry about", my regular doctor finally referred me to Dr. Kohagen when blood tests, cat scan, &c. couldn't find a cause for elevated liver enzymes. Dr. K. took one look at my list of symptoms, asked a few questions, & even before running any tests said I definitely fit the Celiac profile. Endoscopy/biopsy confirmed it.

He was very encouraging about my hopes for a full recovery if I stayed gluten free. He specified the types of foods I should avoid, but didn't discuss all the detailed changes in depth. He asked if I felt I could handle the necessary research myself, & did offer to refer me to a nutritionist if I needed more info. Before the biopsy I had already found this website & educated myself quite a bit, so after asking him a few questions that had occurred to me, I said I didn't think I needed a nutritionist just yet. (I might have said yes anyway, but my insurance is iffy & my cash flow is already problematic with all the testing I've been through!)

He was quite sympathetic about the complexity of the diet, but stressed that it was important to be thorough. He was most definitely EXTREMELY encouraging about the potential results of staying gluten-free. I do have to say that despite my love for baking, I was by no means a resistant patient. I was mostly relieved finally to have an answer to this nagging puzzle. I'm only just beginning the diet, but I'm so hopeful now that I will soon feel truly well again after many years of dragging myself around by force of will.

I hope your mother in law sees the light! Sounds like she might need a nutritionist too, but if she sees Dr. K. he will certainly refer her.

Best of luck,

Leah

Hi Dana,

I was just diagnosed as Celiac by Dr. Kenneth Kohagen at Digestive Healthcare. (Near Rex Hospital.)

I had been having "IBS" & anemia symptoms (among others) for over 10 years & getting no help from previous doctors, but Dr. K. finally put all the pieces together. I found him to be friendly, sympathetic, & very efficient. Hope this helps.

Leah in Raleigh