penguin

Congratulations!!!!!!!

They made me so angry when i spoke to them on the phone and i tried to tell them that any form of wheat would make someone with celiac disease very ill...shes kept on giving me the "well wheat occurs naturally in soy, we dont add wheat as an ingredient"

HELLLLOOOOOOOOOOOOOOOOOOo its still in there... I think they think b/c they dont add a wheat product directly its ok! I was so frustrated I just told her that I wouldnt be buying this to poison myself..and hung UP!!!

Hmm, interesting how wheat, a grain, occurs naturally in soy, a legume. Somebody needs a botany class at that company

Trust me, there is nothing gluteny about potatoes. Seriously. They're not even a grain, they are a starch, but not a grain like WBRO or corn or rice. Potatoes are made up of starch, water, and cell walls.

You may have issues with starches in general, or nightshades, or large quantities of tapioca, but it's not a gluten thing unless you've cc'ed.

Haha, I'm watching the Crucible. Sometimes I think this board gets like that

you do what you gotta do... just know that I care about you and don't want you to be ill any longer than you have to be... what's gonna happen IF the biopsy is inconclusive too? I hope that's not the case, I don't want you doubting this. In my humble unprofessional opinion you already have your proof... I am of the opinion that there is no difference between Celiac and Gluten Intolerance, I know the technical stuff about biopsy being gold standard, blah blah blah, but I just have seen so many instances of people that had negative or inconclusive biopsies and were told they could continue to eat gluten only for them to get extremely ill and then show up with a positive biopsy after they've done irreperable damage to their body (other illnesses that were caused because of gluten) and I've talked to experts in the field that have told me that the biopsy is no longer the gold standard even though it is still currently accepted as such. The biopsy is so flawed, sure it can confirm Celiac, but it also misses sooooooo many Celiacs...

I'm not trying to change your mind, just explaining where I'm coming from... {{{{{{{{{{{{HUGS ok?}}}}}}}}}}}}}}}

I know totally where you're coming from, and I completely respect your opinion and agree with your reasoning, and most of your points

Hugs are perfectly fine Seriously, not mad at all!

Both the PA and the doctor both said that I'm going to have to be gluten-free regardless, so no worries on them telling me it'll be ok to eat gluten. Part of it is wanting to know how much damage, if there is damage, there is. I clearly CLEARLY have an intolerance, I (and the doctors) want to know if there is damage (yet). There's nothing wrong with getting a second opinion for a lifetime diagnosis.

Also, I don't mind the endoscopy. I had one two years ago (biopsied for cancer in stomach lining, no celiac testing) and it wasn't bad, so that part isn't putting me out. Half a day on drugs with a needle in my arm is worth the knowledge of what's potentially going on. I also want to know if my stomach lining is still so inflamed

Thanks for the concern guys!

I'm really not trying to be difficult, like I said before I'M the one grasping with trying to understand your reasons but that is MY problem not yours so ignore me if I've said anything wrong. I mean well. I just want you to start getting better TODAY.

It's just something I need to do. I know me, and if I didn't have confirmation I would be hemming and hawing back and forth for years wondering what would have happened if I had the biopsy. I would be more likely to challenge myself all the time, and that's not something I need to do. The difference between your celiac diagnosis and mine is that my blood tests were totally inconclusive, and I'm not comfortable with having a celiac diagnosis on my record with just dietary response (though yes, that is a valid diagnostic tool). I'm simply not comfortable having that diagnosis without having all of the testing I should. An intolerance, sure, no problem. Celiac, not so much.

Thanks again for your concern! I really do appreciate it, but I have to do this for my own peace of mind. Call it naivete on my part, but I gotta do it.

Although being on gluten until August is going to suck.

I feel like my night vision isn't what it should be, but I went to the eye doctor and they told me to be a pilot because my vision is better than 20/20

Like, a lot better. Read the bottom line of the chart with one eye better.

Doesn't mean I don't get eye strain though. Since doing this gluten challenge my eyes are itchy all of the time, though.

Thats great!!

But I have a question for you... if your going gluten-free reguardless of the neg bisopy... why do it?

Because I really AM nuts.

One reason is because of insurance, I have celiac as a dx on my record now, but if the biopsy is negative, then they can't dx celiac. Fewer insurance complications down the road. Also, if I never got the biopsy, I would wonder forever whether it was real or not and I would keep challenging myself. If I know it's an intolerance, and I have two doctors saying it, I'm going to process it better. Does that make sense?

Having the dr. agree with me is also convincing my mom that everybody in our family needs to be tested, and that I'm not a hypochondriac. Big plus!

Hi! Zachary is allergic to nuts among other things. He loves chocolate milk, though. So I'm sure I can get him to drink the rice milk with chocolate in it. (He used to be a huge fan of Ovaltine.) Is Hershey's Syrup gluten-free??

Speaking of chocolate milk, here's a funny little gluten story to share... As bad as Zachary's poops were, my husband and I would always comment on how much worse they seemed to be when he ate chocolate chip pancakes (bisquick) and drank chocolate milk (ovaltine)! What we thought was that he had an allergy/sensitivity to chocolate!! This was, obviously, before our concerns about gluten resurfaced. We never put the reaction with the Bisquick and Ovaltine together with gluten until we found out he WASN'T allergic to chocolate...duh! We were just giving him two of his favorite things, and unbeknownst to us it was wrecking his stomach! Poor little guy!!

The milk chocolate flavor of ovaltine is gluten-free, but I think it has casein. I called the company in March and it's a-ok for us.

As with all other processed products, beware of cc. I haven't had a problem, though. It's a great way to get some extra nutrients.

I am 3 for 3 for awesome doctors in Austin! I think all of you with whack-jobs in Florida should move here

Everything from beginning to end with my gastro appointment was great, well, other than waiting a long time, but that's anywhere!

I took my worlds-longest-list-of-symptoms to the dr, and I saw his PA first. They didn't think I was nuts! She asked questions, did an exam (she found a heart murmur ) and told me that I'm clearly at least gluten intolerant, and that they'll do the endoscopy but it may come back negative. She said that I'd need to be gluten-free even if they came back negative. She also told me they do 8 or 10 samples for the biospy from as many random places as they can

I was so impressed. Amazed, actually.

They're doing an iron study since I have small RBC's, and a bone density scan. They're waiting untl August to do the endo so that we'll have the highest possible chance of getting accurate biopsies. Did I mention that both my dr and his PA have gone up to see Dr. Green's seminars? And that they've both spoken with him?

He also gave me gluten-free fiber He said that gluten-free fiber was important since gluten is causing the problem, no reason to compound it!

Awesome awesome awesome! Further confirmation that I'm not crazy!!!

GOOD DOCTORS DO EXIST! IT'S NOT JUST AN URBAN LEGEND!

Edit: The PA also said that it probably started when I was little and had stomach aches that the dr's chalked up to a sensitive stomach. She said, "well, the average time of diagnosis is 11 years after symptoms start. Looks like you're already way beyond that" Put it that way, I've had this for 16 years!

I took lexapro for one whole month. I stopped because I felt like a zombie and decided I could figure out my panic attacks on my own.

40 is suppose to be the new 30, heck 50 is suppose to be the new 30

So...does that mean 22 is the new 12? What the heck am I doing being married and working!?

Our family recipe just involves dredging. We don't use a liquid batter at all! Just season what ever flour you're using, coat the cube steaks, and fry! Easy as pie...haven't tried it gluten-free though. I don't see why rice flour wouldn't work.

You can develop allergies at any time. I am severely allergic to both cats and dogs, but I have two cats. For some people (not all) they can build up tolerances to allergens (that's how allergy shots work). I've built up a tolerance for my own cats, but other people's animals get my allergies going. Mostly dogs, though.

When we got the new cat, I was allergic to her for a few days and then built up a tolerance.

If you already have a cat and don't have problems, you'll probably be ok.

Remember to use seperate boards for veggies and meats. According to Alton Brown (my hero) wood is best for veggies, and plastic is best for meats, since you can put it in the dishwasher to sanitize and it won't hurt your knives.

I leave for my appointment in about 45 minutes. I can't eat anything because my stomach hurts, which is good in a way, at least I'm going to the right kind of doctor for that.

I won't eat because I can't get over the fact that I've gained 16 lbs since May 19th! Very few of my clothes fit me. I haven't weighed this much since high school. Why on Earth would someone gain weight that fast?

That's like, 5 lbs a week?!

I don't know what to do...

Dole and del monte fruits are gluten-free. Almost all of the del monte veggies are also, but that info is on their website.

Q: Which Del Monte products are gluten-free?

A: Del Monte Gluten-Free Products

Please note: The list below includes products that, to the best of our knowledge, do not contain wheat, oats, rye or barley/malt ingredients. The list may change or not be complete due to formula changes or new product introductions. Please read the ingredient statement on the label for the most current information.

Del Monte Gluten-Free Products

Canned/Jarred Fruits

Fruit Snack Cups (Metal and Plastic)

Canned Vegetables (except Del Monte Savory Sides Green Bean Casserole)

Tomatoes & Tomato Products (except Spaghetti Sauce Flavored with Meat)

100% Fruit Juices

Why am I so nervous about an effin' doctors appt? This is a new GI doc, the last one I saw two years ago was a total toolbox. I don't like dentists for the same reason, one (ok two) bad apples in the bunch ruined the whole business of apples.

Apparently this one knows something about celiac, but I'm afraid he'll think I'm nuts! Of course, I have a doctor that actually diagnosed me celiac, but she didn't order an endo or anything. I have this big long list of symptoms and stuff, as much for me as for him, since I tend to forget things at dr appts. I'm going togive it to him along with copies of records from Dr. GI Toolbox and my most recent bloodwork. Here's what it says (sorry for yucky details):

As a child:

 GI workup around age 7, everything normal, stomachaches attributed to stress from siblings going to college

 Vomiting in the middle of the night (about every month)

As an adult:

 Mononucleosis summer 2002, sick for two months

 Beginning the following fall, diarrhea almost daily to present

 On-and-off anemia, elevated platelets

 Fall 2003- pyloric spasms start (ranging from weekly to every few months), no cause found after upper GI, ultrasound, and EGD

 Small ulcer found during EGD, attributed to heavy NSAID use. Treated with 60 day course of nexium. Didn’t effect spasms or diarrhea.

 Avoided oranges, tomatoes, and other acidic foods. Spasms happened anyway.

 Several h.pylori blood tests negative (taken about once a year)

 Spasm symptoms: moderate/severe abdominal pain, nausea, vomiting

 Spasms formerly treated with hydrocodone, levsinex, now treated with bentyl and phenergan

 Diagnosed with IBS, told to eat more whole grains. Didn’t help, made diarrhea worse.

 Celiac Panel in 1/06 – Only IgG comes out positive

 Gluten-free for four months, had some improvements

 Dr. Bartos makes Celiac diagnosis 2/24/06 after 3 weeks gluten-free

 Allergy testing 3/06, no food allergies

 Back on gluten 5/19/06

 Currently taking daily: Prilosec, Kariva. As needed: Bentyl, phenergan

 Other symptoms (GI or Otherwise):

o Heartburn

o Flu-like muscle aches (no fever)

o Facial numbness

o Lack of concentration (Spaced-out feeling)

o Feeling of intoxication

o Mouth sores (painful white patches)

o Foul gas

o Foul stools

o Lightly colored stools (from bright/pale yellow to orange)

o Loose stools (often bulky)

o Mucus in the stools

o Passing undigested food (especially vegetables and fruits, cooked or raw)

o Problems drinking milk, but cheeses and yogurt ok

o Tingling in hands and toes

o Tingling in the scalp (feels like my hair is falling out?)

o Lower abdominal cramping

o Charley horses (hereditary, have them at least once a week)

o Fatigue

o Gas and bloating

Um...anything else I should include? Am I nuts? I'm flipping out!

Let me tell you, the thing I am DYING for is a burger. If it wasn't for the BUNS I could have one. But it's just no fun to eat one without a bun.

At least I can still have meat. I went to Applebees awhile ago and got a take two of Prime Sirloin and their Ribs. Delicious!

Sorry, I'm bursting a bubble here again. NOTHING in Applebees is gluten-free. There was just a big thread about how unfriendly they are. CC is rampant and their meats come pre-marinated.

let's face it: America is Glutten-Central. Other countries use rice and stuff, but we choose wheat. We could very easily use rice, but because we're so used to wheat, and because of the extra cost for places like McDonald's to make a non-wheat bun, it'll likely never happen until enough demand comes. And that isn't likely since this is rare.

The thing is that wheat is pretty essential to tasty bread BECAUSE of gluten. Gluten is like elastic, and it makes breads stretchy. The problem with rice bread and such things is that it lacks that elasticity, so we have to add a bunch of crap like gelatin and xanthan gum to try and hold the ungluteny grains together. That's why most gluten free breads and crackers fall into either the cardboard or styrofoam categories.

As far as McDonalds and gluten-free buns, I've heard rumors that in Finland (or some other scandinavian country) has gluten-free big macs

Oh, and Celiac isn't rare. It occurs in as many as 1 in 133 people.

hay ravenwoodglass, can you please come to my doctor with me please and sit her down and explain it to her,my levels were just over so shes not sure and is sending me to have a colonoscopy( not happy) to get a definate result and wants me to go back to non gluten-free food so they can see the danage full blown, i dont want to do it.

Why is she doing a colonoscopy to test for celiac? You have to biopsy the small intestine to determine villi damage..

Nicole--

That's good news! Stick with it and keep him accountable...meaning, make sure he keeps "getting it" and caring for you well. Oh--and I don't mean "getting it" like sex--but in understanding you and the situation

That's really funny! My local newspaper is running an ad campaign that is all about "Austin gets it" or "my grandparents have been 'getting it' for 50 years" or "I love 'getting it' when I get home after a long day at work" It's all very suggestive

For a couple weeks, there were just these ads everywhere for "do you get it?" without what the ads were for. Very effective

www.austingetsit.com

what's wrong with freckles? I always wanted some. maybe you can give me yours

I agree, nothing wrong with freckles!! I have lots across my nose and DH gets upset that I cover them up with makeup

Did they apply it with the kabuki brush? That gives you a lot more coverage with the bare minerals!

As has been said before, there are many ups and downs in the healing process. You will have times where you feel like crap. I had about 3 weeks there where I could barely function because I was so tired. Hang in there, you're probably just detoxing and healing. Make sure everything is gluten-free. You may have other intolerances as well.

As for the lumpy nut, you probably should have it looked at. The earthworm you feel is most likely your epididymis, which may feel like a lump if you're not used to examining yourself. You are in the age range (usually 20-39) for testicular cancer (not to scare you) but if it feels suspicious, insist that it gets checked out.

Here's a link: Open Original Shared Link

Hi, The reference scale is given in this line

"17.9 is considered a high result for the Tissue Transglutaminase AB.Iga test if 7.0 and greater is positive"

The reference scale lists 7.0 and above as high. Hers was 17.9

Whoops, misread your post then.

Yep, that's definitely high, she more than doubled the normal range. Definitely celiac.

OMGosh Chelse this is fabulous!! I made it today for my Aunt who is coming to town and I snuck a small bite. It is to die for! I have always loved mouse but didn't know how to make it and I thought it would be to hard anyway, but this was not hard at all.

Next time I am going to use it as a filling for a white cake and make some kind of White Chocolate Strawberry Cake concoction.

Thanks a million for posting this

Yay! I'm glad someone else liked it! I love the Simply Recipes blog. Total food porn

Elise (the blogger on Simply Recipes) modifed the mousse from a cake recipe, actually. It's a Martha Stewart cake, here's the link: Open Original Shared Link

Of course, you'd have to make it gluten-free, but it at least has assembly instructions

I think I'm going to make it with raspberries for when my inlaws visit in a few weeks. The mousse can also be made a couple of days ahead of time