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jenngolightly

Member Since 13 Sep 2007
Offline Last Active Aug 17 2011 04:35 PM
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#711321 Lost And Confused And Sad

Posted by jenngolightly on 23 June 2011 - 01:00 PM

I had a negative blood test for Celiac. My IgA and IgG antibody levels were very low, which pointed to antibody deficiencies instead of Celiac. My endoscope also came back negative from the lab, but the doctor had confirmed by sight that my villi were flattened. The problem is, if the doc doesn't biopsy the right places, they will come back negative. Unless you have a severe case of Celiac, your whole small intestine won't have flattened villi. That's why they're supposed to take many biopsies, just so they might "hit" one of the spots that has the flattened villi. So I had negative blood tests due to antibody deficiencies and negative endoscopy results due to inaccurate biopsies. But I DO have a doctor-confirmed diagnosis of Celiac disease.

How do I know? My wonderful doctor (not everyone can say that about her doctor) diagnosed me based on both my symptoms and on my recovery due to the gluten-free diet, and also hereditary factors. I had all kinds of problems due to Celiac - osteoporosis, anemia, GERD, neuro problems, insomnia, constipation, lethargy, etc... and they all cleared up when I went gluten-free and took appropriate supplements.

Your scope and blood tests may not diagnose you, but your reaction to the gluten-free diet will. If you get better because you stop eating gluten, then gluten is the problem. It may not be as comforting or make your family and friends believe you have a serious problem, but it is what it is.

Hope your scope goes well.
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#710726 My Mum Wants To Sue?

Posted by jenngolightly on 21 June 2011 - 10:04 AM

I think it's better to expand the options of places to eat than to limit them. Since the restaurant was on a "safe" list, the incident was probably an oversight. Instead of getting upset and threatening to sue, which could do a lot of harm and potentially giving the restaurant such distress that they stop offering gluten-free options, it's better to talk to the manager and let him know what happened. They can look into the problem and make sure they correct whatever went wrong so it doesn't happen again. Restaurants don't want to make their patrons sick. They want repeat business.

It's better to ensure that restaurants are working toward becoming more gluten-free capable by peacefully making the manager aware of problems and expecting them to fix whatever goes wrong. It's a learning experience for everyone.

Rants, tantrums, and threats only make people less likely to want to accommodate us.

I hope you are feeling better.
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#706603 Your Top Two Pieces Of Advice

Posted by jenngolightly on 07 June 2011 - 10:22 AM

1. Keep a food diary
2. Find a support network (like celiac.com)
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#704432 Corn Carpet

Posted by jenngolightly on 31 May 2011 - 03:54 PM

Ha Ha. Carpet that's been Godzilled in Godzone :lol: Sorry, Jenn, we have hijacked your serious question because we are out of control today.

Seriously, I never heard of carpet made from corn before. I don't particularly like the thought of it because corn plays havoc with my system. And I just spent a sleepless night without any idea of what got me so I do my best to stop things getting me. Are there any alternatives you are looking at?

No problem. I have a good sense of humor and it wasn't a terribly important question... I'm well past the intro to Celiac phase...

I went through books and books of samples - all manufacturers put together sample books. I ended up with two books with really soft, thick, durable carpets with colors I liked, of course they were both made from this new synthetic fiber. The dealer was really excited about it - he's not a salesperson. When I told him about my problem with corn, he was uncertain about the carpet. I took the sample books home and spent a lot of time touching them with no lingering effects.

The corn industry... it just takes time until corn is literally in everything we own and eat. :angry:

I understand your suggestion to look at something else. It's something I'll consider. Although I'm not really worried, I also don't want to make myself sick.
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#704327 Corn Carpet

Posted by jenngolightly on 31 May 2011 - 01:03 PM

Can you find somewhere that sells it and has samples so you can roll around on it for a while?

ROFL. I spit out my tea when I read this. I had to wipe off my monitor. :lol:

"Excuse me. Can I roll around on your carpet for five minutes?" They'd think I was a crazy-lady!
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#702274 Soy Allergy's

Posted by jenngolightly on 25 May 2011 - 11:56 AM

It's important to get an epipen like gfmanna suggested.

You never know when you'll unintentionally eat something with soy in it, and you should be prepared. Your reaction now can suddenly intensify into a life-threatening anaphylaxis episode.

Like you, my allergy only developed recently. My doctor gave me an epipen and an albuterol inhaler, even though so far I've only had the tightening of airways and eczema reactions to nuts. She warned that with allergic reactions, things can escalate quickly.
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#702270 Corn Intolerance?

Posted by jenngolightly on 25 May 2011 - 11:27 AM

I became corn-intolerant after I went gluten-free. My reactions are similar to gluten reactions. The hardest adjustment for me is that almost every packaged/processed food has corn as an ingredient, so I have to make all of my own food. It's time-intensive.
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#701680 My Friend Is Coeliac, What If She Decides To Eat A Piece Of Cake?

Posted by jenngolightly on 23 May 2011 - 01:14 PM

she may become dissatisfied with gluten-free treats. I remember when I first started the diet I thought all the breads were terrible, now I love Udi's and find the ones that grossed me out in the past to be very tolerable.

Agree. When I first went gluten-free I hated the texture of baked goods - now I love them, and they're treats that I give myself very occasionally (even bread). For my birthday I made the new Betty Crocker gluten-free cake and topped it with homemade gluten-free corn-free chocolate frosting. It was delicious! Perfectly moist and chocolaty with rich, creamy frosting. I was in heaven. It was just as I remembered birthday cakes had tasted 5 years ago.

Go figure - no one else liked it. That's okay, more for me. B)

I think it might take another 5 years to get used to gluten-free baked goods if I cheated like the original poster's friend. Licking the bowl of a gluten-free cake is definitely sub-par, but the end result is decadent!
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#701675 Severe Travel Anxiety!

Posted by jenngolightly on 23 May 2011 - 12:54 PM

I wouldn't go. If everyone agrees that it would be a huge help, then it sounds like she has a large support network. Can't anyone else go? If you have the money for a plane ticket and no one else can afford to go - buy them the plane ticket. Your health is as important as your friend's need for a flight-buddy.

It's unfortunate that you don't have a little money to go and have a vacation with yourself. Fly there with your friend, book a couple nights in a hotel, eat at some safe restaurants, and see the town.

Just my opinion.

What can you do to prepare for a gluten-filled house? What can you bring to make it safe? Pack utensils and food?
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#699249 A Diet Without Grains?

Posted by jenngolightly on 13 May 2011 - 11:32 AM

Grain free wasn't hard for me. It was hard to feel full, though. Grains give you that bulk feel in your stomach. I recently reintroduced white rice and although I feel full, my C has returned - not as bad as when I had a lot of different grains in my diet, though. Thinking I need to go grain-free again. Bummer.

I was on a strict SCD diet for a year and now I eat a much less restrictive diet, but mostly whole foods. SCD doesn't restrict from NO carbs, just complex carbs that are harder to digest.
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#698982 I'm Free!

Posted by jenngolightly on 12 May 2011 - 02:04 PM

Preface - haven't eaten out for 8 months. I can't eat gluten, corn, dairy, or nuts. I don't eat processed foods.

I've been dreading this day for a month. We had a going-away lunch for a colleague at a local sushi place and I've been getting more and more anxious as the date approached. I even thought of calling in sick, but I really like this woman and she'd be disappointed if I didn't go.

Like many of you, I've turned down a lot of engagements that involve food because I thought I couldn't eat anything or would have to take my own food. It's easy to bring food to work-based functions, but not usually restaurants - although I've done it. I've felt really lonely and like a shut-in because everyone else goes out to dinner and I am stuck at home.

But I did it! I pulled our server aside after drinks were brought - as I always do, while people are busy reading menus and talking - and told her about all of my "allergies" (much easier to explain than "intolerance"). I asked about the duck salad and would she please asked if it had any of those things.

Out came another woman who knelt near me and we talked about the food. She said she had a wheat allergy and would personally make all of my food. We tailor made my lunch: grilled salmon with salt only, a salad with specially-made salad dressing that she would mix up for me, and sticky-rice. She wrote everything down. The regular server took everyone's order (10 people) and when she got to me she said, "You've been taken care of" and moved on. And my lunch came out with everyone else's! No one knew!

I'm definitely going back there. I felt so at ease and worry-free.

I also figured that I can go to restaurants and order fish with salt only. I can't imagine that it can be pre-marinated because it would fall apart. So fish and a green salad with vinegar or fresh lemon juice as the dressing (I eat salad with vinegar only when I need a fast dressing - sounds weird but it's pretty good when you get used to it). And fish is grilled with skin side down, so less chance of cc.

I could do this again. :D
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#698338 High Fructose Corn Syrup

Posted by jenngolightly on 10 May 2011 - 01:55 PM

I just found Sierra Mist Natural - finally! A soda that's not made with HFCS!
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#695760 How Do I Handle A New Job?

Posted by jenngolightly on 29 April 2011 - 11:26 AM

I feel your pain. I pretty much stopped going to comapny dinners because there were too many instances of management or organizers forgetting or not understanding what gluten is and what ingrediants have it. There's nothing worse than smelling the pizza everyone else is eating while picking croutons of an alleged gluten-free salad.

This is really sad. Isolation is not a cure for Celiac - and not going to work events can be damaging to your career. You may be told that it's optional, but when your boss knows when you aren't there.

When you're ready, you can learn ways to compensate for these kinds of situations by either eating first or bringing your own food. I bring my own food everywhere in an inconspicuous bag and ask the caterers for a clean plate. I go somewhere quiet to fill my plate and sit down to eat with the others. People don't usually notice because I don't make a big deal out of it. It's not like people are looking at each others plates to see what they got - generally everyone gets the same thing and I make sure that whatever I bring can be eaten cold and with a fork and knife. NOT a salad with dressing and never anything you have to eat with your hands. If someone questions you, just say you're allergic to x and like to bring your own food so you don't get sick. Period. Don't say anything else. Work events are not the time to give long explanations of Celiac and the tmi effects of eating gluten. Deflect questions by asking about the other person. If they're really interested, ask them to talk to you about it at work over coffee.

The point is, you don't have to live in a bubble. People shouldn't think you're sickly. You can be active and involved in your work events.
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#695101 Losing Friends Because Of My Food Restrictions

Posted by jenngolightly on 26 April 2011 - 02:17 PM

Oh - I also wanted to say that after I was prescribed an epipen, my anxiety about food went way down. Just having it on me made me more comfortable so I could go out and interact in a world of nuts (the food kind) :P I hope your epipen gives you some peace so you are able to go to homes of friends without being terrified.
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#695092 Losing Friends Because Of My Food Restrictions

Posted by jenngolightly on 26 April 2011 - 01:52 PM

That sucks. Have a gluten-free {{{hug}}} from me.
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