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Member Since 27 Dec 2010
Offline Last Active Feb 04 2012 07:38 PM

#737013 Desperately Sick Could This Be It?

Posted by on 07 October 2011 - 05:18 PM

I'm so sorry you're so sick. Let's look at your symptoms. Celiac can manifest itself in a lot of different ways.

*Geographic tongue--you have a textbook example of it (do a Google search if you're curious)
*Mucus in stool
*Nerve problems (that's the tingling and vibrating you feel)
*Brain fog
*Menstrual problems
Sores on fingers

All of the symptoms I put a star next to are ones that are known to be highly correlated with Celiac. You will find people on here who have those same symptoms. The only thing I don't know about is the sores on your fingers. They could very well be related, I just have never seen that before.

Your negative blood test, as you seem to know, doesn't mean much. Plenty of people text negative and go on to end up having Celiac anyway. You need to bring this up at your next doctor's appointment (make one now if you don't have one coming up). If your doctor doesn't want to do a biopsy, find another doctor who will.

It's important to remind you, though, that even if you suspect Celiac (I do, from the little I know), you must continue eating a high-gluten diet until after your testing is finished. If they do a biopsy they'll be looking for villi damage, which they won't necessarily find if you stop eating gluten and your villi begin to grow back.
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#736871 Making Fun Of Gluten Issues On New Cbs Show

Posted by on 07 October 2011 - 06:12 AM

I filed a complaint on CBS's website. You all should too. Here's what I said:

"I have a medical condition called Celiac Disease that causes my immune system to attack my small intestine if it detects even trace amounts of gluten in something I eat. I was repulsed when I heard the gluten joke in 2 Broke Girls. I have been made seriously ill at restaurants when I was not taken seriously by the server, and I rarely eat out because gluten intolerance is not taken as seriously, as common as it is becoming. I do not appreciate TV shows perpetuating the widespread discrimination against people with medical diets or food allergies. Would a joke about sugar-free foods for a diabetic have been funny? Not to mentioned the fact that the joke also was discriminatory against people with eating disorders, which may have been worse because media is often a major factor in eating disorders.

You have lost me as a viewer, and I suspect you have also lost the 40 some thousand who suffer from Celiac disease or other forms of gluten intolerance. I doubt the 8 million sufferers (mostly young girls) of eating disorders in the US found that joke very funny, either."
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#727951 Pity Party/ College Search

Posted by on 05 September 2011 - 02:13 PM

I can see that you're at your wit's end about this. I don't have any advice--frustration with my university's lack of knowledge or accommodation was one of the reasons I resorted to living at home after the first 2 years. I just wanted to say that I've been there, and it sucks. It's hard to go too far away because then you've got travel costs during breaks, and it makes your head explode when schools simply WON'T do what they would be able to do if they were willing.
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#699470 I Did A Really Dumb Thing And Drank Some Beer.. So Sick

Posted by on 14 May 2011 - 05:50 AM

Please consider yourself diagnosed. Humans went thousands and thousands of years listening to their own bodies, and only recently in our history have we decided that a special person with "special knowledge" is the only one who can tell us what is going on with our own bodies. There's something wrong with this, in my opinion.

You have had a horrible, memorable reaction to gluten after being gluten-free. You should be excited that your body gave you this clear of an answer to erase your doubts.
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#698546 What Is The Point Of The Biopsy If You Have + Bloods

Posted by on 11 May 2011 - 06:31 AM

Forget the gold standard. At least half of us on here had some negative result at some point anyway but are still happily and healthfully gluten-free celiacs.

Biopsies can be useful to determine your level of damage, and sometimes people get them a few months after going gluten-free to check how well they're healing.

If you are satisfied with your diagnosis based on bloods, and you're ready to just start healing and move on, don't worry about it. If you'd have to spend over a year making yourself sicker just to get a biopsy that may or may not be positive, especially if you know gluten-free makes you feel better anyway, don't worry about it.
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#697166 Anyone Else..softer Skin?

Posted by on 05 May 2011 - 02:42 PM

Since going free my acne on my face and upper back has almost completely gone away and my skin there has been much more smooth, less bumpy and gross.
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#691667 Advice About My Gasroscopy Please....

Posted by on 12 April 2011 - 03:03 PM

To sum it all up:

It's very possible that all of your symptoms, including the findings of your colonoscopy and even your endoscopy, are indicative of either celiac or gluten intolerance. You CAN have celiac with negative bloods and biopsies, though in my opinion, if you know gluten is causing a problem, it doesn't really matter what name you give it. You tried going gluten-free and felt better, and that was only after 3 weeks (many of us take months to start seeing a difference).

I strongly advise you to go back on a very strict gluten-free diet.
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#691566 Papa John's

Posted by on 12 April 2011 - 08:32 AM

Websites owners or moderators can't choose the types of ads that appear on the site (except for ads from the site's sponsors). The ads aren't handpicked--basically whatever company (say, Google) provides the ads runs an automatic scan on the website and picks up words, and the ads get matched to that. They do that so the people who are on the website will see ads that might actually interest them, and click on them, and make money for the ad companies.

So a website that has the words "gluten" or "celiac" will get ads from gluten-free bakeries or companies, and multivitamins targeting Celiacs. But we also talk a lot of "pizza" and "cookies" and "bread," etc. and so you're bound to see a regular pizza ad on here every once in awhile. Sucks, but it will happen.
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#685272 If You Get Glutened Friday Night, You Feel The Effects ________

Posted by on 20 March 2011 - 06:10 PM

Could be. For me it often varies, sometimes I wouldn't feel the full effects of a Friday night glutening until Sunday morning. My gluten reactions always wait until morning, for some reason.
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#685056 Brown Bear Spice Muffins (Recipe!)

Posted by on 19 March 2011 - 06:26 PM

If you try it with the amaranth let me know if it works. Hope you enjoy them!
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#684883 Brown Bear Spice Muffins (Recipe!)

Posted by on 19 March 2011 - 06:51 AM

I made these muffins awhile ago and someone asked me to share the recipe. I half invented them, half adapted them from glutenfreegoddess.blogspot.com...Karina's vanilla cupcake recipe. But these are definitely muffins. They are a sweet, spicy breakfast muffin. I fiddled with the recipe while I was making them in order to get them the way they ended up, so feel free to do the same. Also, substitutions work in many cases. Inherently gluten and soy free, potentially free of dairy, corn (if you choose ingredients and brands carefully), and eggs.

Dry Ingredients:
1 1/2 cups sorghum flour
1 cup tapioca starch
1 cup brown sugar
1/2 tsp. salt
1 tsp. baking powder
1 tsp. baking soda
1 tsp. xanthan gum (guar may work)
1 1/4 tsp. cinnamon

Wet Ingredients:
1 cup warm water (or rice milk)
2 eggs (or replacement)
3 Tbs. butter or olive oil
1 Tbs. vanilla extract
1/4 tsp. lemon juice
1/2 cup applesauce

Swirly Filling:
1 Tbs. butter or olive oil
3 Tbs. brown sugar
1 Tbs. applesauce
1/4 tsp. cinnamon

Preheat oven to 350 F. Combine dry ingredients. Add the wet ones in and beat or blend well. Spoon into greased 12-muffin tin. Mix the filling ingredients together in a bowl with a fork. Spoon evenly over unbaked muffins (yes, on top--it will sink in by itself during baking). I put a few small lumps of brown sugar over the tops before baking them (optional). Bake 27-30 minutes. Freeze whatever isn't eaten in the first day, and microwave for 30-45 seconds to reheat.

These were so yummy when I made them, and I swear they would have fooled any gluten-eater in the world (yes, even the texture!). It's a flexible recipe, so do what works for you in terms of substitutions and amounts of ingredients. Let me know how they turn out and if you do anything differently. :)
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#678736 Diagnosed Yesterday

Posted by on 26 February 2011 - 05:02 PM

I'll try to help here because I think we're about the same age and I'm in a similar situation.

To start, even though you don't know how sensitive you are, you need to assume the worst while you're healing. You don't need to get new dishes (just make sure things get washed properly) but you should get new non-stick pans/sheets and a skillet if you use one, especially if these things are scratched. Gluten can get cooked/baked in there and make you sick.

Keep your gluten-free things in a separate place (a different cabinet or shelf will do) from gluteny things. Make sure your roommate understands just just because you aren't going into anaphylactic shock doesn't mean it's not important that you don't get contaminated at all. You will suffer damage to your intestines whether you react or not, and you will likely react and get sick. Your kitchen doesn't need to be a biohazard, but if your roommate bakes, she needs to make sure to wipe up well afterwards..and you probably shouldn't be baking in there at the same time or shortly afterwards as flour can hang out in the air.

Unfortunately, you can't take communion. Talk to your church about whether you can provide a gluten-free wafer (they do exist). I have heard of some members here having a hard time in certain churches because they believe the host must be made of wheat in order to be valid. I have been to Catholic, Episcopal and other churches since going gluten-free and have either just take the wine, brought my own substitute (a cracker, maybe) or sometimes had to just skip it. Talk to your pastor and try to work something out.

It's good that you're aware of the need to be very careful and take this seriously!
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#675474 Lupus?

Posted by on 15 February 2011 - 10:16 AM

Wait, have you actually been diagnosed with lupus? Or are you just suspecting it in light of your symptoms? If you haven't actually been diagnosed to have it, you need to go to your doctor ASAP and talk about it. I understand your ANA is a little higher than the normal range. Lupus isn't something to play around with so if it turns out that's what it is, you want to start treatment right away. I'm sure you understand that people with one autoimmune disease (like celiac) are more prone to develop others as well. Go get serious with your doctor--if you're really concerned about lupus, don't leave without a referral for more testing or another doctor.

While you're at it, mention the other conditions you think you have symptoms for.
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#674705 Changing Lives

Posted by on 12 February 2011 - 11:19 AM

My best friend was the reason I started thinking about celiac in the first place. She was diagnosed about 4 years ago, and my symptoms started to develop about a year after we met. Since they so closely matched what she told me were her issues, I decided to check it out.

And post-gluten-free for me...my mom decided to take my dog off gluten to see if it would resolve his problem with hot spots (itchy spots on the skin that he licks and bites until it turns red and raw and all the hair falls out) and low and behold...it did the trick. Now he stays on the special food and shares my gluten-free pretzels as his treats, haha.
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#667000 Gluten Free Specific Food

Posted by on 10 January 2011 - 07:58 PM

As a college student with a very small budget for food, I'm with you on that one. I don't knock those who do replace all their gluten foods with the alternatives, but I feel much better about the way I spend my money if I limit that. I do buy the occasional box of special pasta but mostly I just go for rice or something instead. I'm not shelling out $7 for a small box of gluten-free crackers, so I've gotten used to having cheese and crackers snacks with corn tortilla chips instead! And I'll put tomato sauce on rice. Things like that are starting to feel normal to me since I'm getting so used to them. I do have a stash of special flours for when I'm really craving a treat or a slice of bread, but I don't use them very often and even so, baking my own is much cheaper than buying Udi's.
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