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Member Since 26 Apr 2010
Offline Last Active Aug 07 2014 05:07 AM

#807915 How Many People Self-Diagnose?

Posted by on 02 July 2012 - 10:20 AM

Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy. ;)

There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you. ;)

Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.
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#807826 How Many People Self-Diagnose?

Posted by on 01 July 2012 - 09:45 PM

Not only for me, for most. Just in human nature that life is easier without doubts. And there is a lot of positive power from doctors, employers, friends, family-members taking your celiac to be a fact.erefore missed to be diagnosed and to find out the benefits of being properly diagnosed.

How dare you presume to speak for "most"? You speak for yourself and no other. Please stop presenting your opinions as the majority. I'm getting angry now because you are acting as if a self-diagnosis is somehow inferior or less accurate than one bestowed by a dude in a white coat who still puts his pants on one leg at a time in the morning. Celiac tests have a 20% false negative rate, 1 in 5 shot that even if you challenge and risk your health and well-being by eating poison you won't get a positive result.

And what are these magical benefits of being "diagnosed" (as if I can't figure my celiac disease out for myself perfectly well)? Please enlighten us. My family understands that I have autoimmunity, my friends eat where I need, my doctors consider me celiac and give me the care I need. A so-called formal diagnosis would change absolutely nothing for me.

In fact, in the US getting diagnosed can be detrimental because it becomes a pre-existing condition that can get you declined coverage or bumped into a more expensive insurance bracket. Hardly a compelling reason to poison oneself for a piece of paper that tells you what you already know.
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#807653 How Many People Self-Diagnose?

Posted by on 01 July 2012 - 06:37 AM

Please don't listen to people encouraging you not to go for an official diagnosis.

For one, when officially diagnosed, it is so much easier to follow a lifetime diet and to convince the people around you about it.
Secondly, being diagnosed, you will get the necessary follow up tests for the possible effects of mal-absorption.
Thirdly, you might have some other auto-immune disease i.s.o. celiac, self diagnosing might put you on the wrong track.

I went on a 30g gluten/day challenge for 2 months (=40g gluten powder or 12 slices of bread) and yes, it was hell, but it was worth it .
Doctors do take me serious and I'm getting all the follow-up tests needed and help I want. Plus I'm super motivated to stay on the diet.

Hang in there, the gluten challenge will soon pass. Trust me, it's worth it.

You mean, for YOU it's easier to stick to the diet. I'm self-diagnosed and I have no problems sticking to the diet. I also have no issues getting proper medial care or convincing my friends/family that I need really clean food. It's pretty obvious when a lifetime of GI symptoms, canker sores, psych symptoms, and anemia all go away after a year gluten-free.

Gluten challenges can be really dangerous. You got off easy. I was specifically instructed by my doctors not to challenge. In my case I risk serious psychiatric illness from the effects of gluten on my mind. You can also trigger autoimmune flare-ups and we had a board member who got so sick she needed hospitalization when she challenged. A gluten challenge isn't something to undergo lightly.
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#807373 Reintroduce Gluten For Diagnosis?

Posted by on 29 June 2012 - 02:02 PM

I didn't get a diagnosis. Gluten makes me too sick and my Dr. says that it's hard to get a positive blood test. Life is too short to waste two months with major depression, canker sores, GI trouble and all my other gluten symptoms. With the numbness you are even risking making the neuro damage worse. I'm not finding any lack of followup care as far as handling my celiac (or gluten intolerance).
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#807249 Starving After Starting Thyroid Meds

Posted by on 29 June 2012 - 07:30 AM

Ack. I hit the minus when I meant to vote your post up, Colleen! Those buttons are too small. That's great advice about not stopping and starting thyroid meds. Very important!
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#806898 Starving After Starting Thyroid Meds

Posted by on 27 June 2012 - 06:45 PM

I have less trouble with depression and more energy on armour compared to levothyroxine. It also fixed the autoimmune inflammation I kept feeling at the base of my throat.

It usually takes me about 4-6 weeks to start to feel better on a new thyroid dose, and as long as three months for symptoms to fully resolve and TSH to fall. You can still have some ups and downs for six months or so. I do have a little more energy on the armour, though I'm perimenopausal so my hormones are still out-of-whack.

Also my Dr. never told me this but stay away from soy. It's really bad for your thyroid. Go easy on uncooked cruciferous veggies like broccoli, cauliflower, or cabbage. They're OK cooked.
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#806750 Yeast Extract?

Posted by on 27 June 2012 - 06:31 AM

As Peter says, normal yeast extract is fine.

Brewers yeast that you might find in supplements or "superfoods" has gluten because it's a by-product of brewing beer.
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#806721 Gluten Free Label

Posted by on 26 June 2012 - 11:24 PM

Major companies like Ore Ida or Frito Lay tend to label gluten-free only if they can guarantee that the food is under 20 ppm. It's in accordance with the proposed FDA regulations. That's fine for most celiacs but a few are so sensitive that they have trouble with gluten-free processed foods. If you suspect this in your daughter you will also have to take her off gluten-free breads, cereals, and cookies as most grain-based foods have traces of gluten on occasion.

If she's eating oats, that could be the source of the trouble. Research is showing a few celiacs might be sensitive to corn. Also dairy can give a lot of us gluten-like symptoms if we're intolerant.

Are you sure she isn't getting into gluten at school? Play-doh has gluten in it for example. Also there is always risk if she is eating with other kids unsupervised.
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#806049 Cross Contamination

Posted by on 24 June 2012 - 10:03 AM

I am working as a waitress right now, and I am so careful with food. I never eat while I am working and I never have my hands near my face. However, I feel like I am getting cross contamination from some where and wondering if it could be from there. I do not live in a completely gluten free home, but I feel like I am being careful at home as well. I have my own seperate toaster oven and my own cubbbord. Any advice on what I may be doing wrong? Thanks

If you never eat while you are working, I'd personally focus on home first. If I lived in a kitchen with gluten I would have separate condiments and a separate cutting board as well as the toaster. If someone gets breadcrumbs in the mayo, you're CC'd. Also is anyone using wheat flour in the kitchen at home? It gets in the air and goes everywhere. If someone bakes with flour and you cook your gluten-free meal shortly afterwards it probably isn't gluten-free.

Also check your toothpaste and lipstick. Rarely board members have gotten CC'd from gluten pet food. For example, you might fill the dog bowl or give the dog a treat and don't think to wash your hands. Also beware gluteny kisses from a spouse or boyfriend/girlfriend.
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#805866 I'm Feeling Lonely Because Of Celiac

Posted by on 23 June 2012 - 05:18 PM

Welcome to the board! Do you mind an answer from an adult? Because I sure feel the way you do sometimes.

I'm going to a party tonight. They will serve beer and I will have to bring my own cider if I want something to drink. I've eaten dinner ahead of time because I will not be able to snack at the party. Even if there is gluten-free food there will be cracker crumbs everywhere because nobody cares that their crumbs make me unable to eat. I will have a bag of dried fruit in nuts in my purse in case the party goes late and I get hungry. I HATE that, not being able to even pick up a stupid carrot stick for fear of CC. I will enjoy the company though, so that's why I'm going.

You have to enjoy the friendships you have, even if they're not celiac/diabetic and don't fully understand what you're coping with. It sounds like your friends are pretty cool if they go out of their way for you. And yeah, I know that salad dinner all too well. And that awkward feeling that I'm asking my friends to change plans...again. Thing is, my friends really don't mind. I bet yours don't either. We like hanging out and the food really isn't that important.

As far as dating, we have a built-in jerk detector. If a girl is more interested in what you eat than who you are, you know right away that she is shallow and probably not worth your time. I don't even bother with a second date if the guy gives me a hard time about my diet. I mean what will he give me a hard time about next??? There will be a time when a girl will come along who thinks you're awesome, and she won't care in the least that you eat a lot of salad and carry insulin with you.

On the bad days, you just gotta grit your teeth and hang in there. Come here and we'll commiserate because we all go through the same awkward social stuff.
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#805847 I Think I Need To Eat Gluten For Blood Test

Posted by on 23 June 2012 - 04:31 PM


I keep seeing ppl saying "months" while new forum members mostly say their Dr scheduled their challenge for some # of weeks.

University of Chicago Celiac Clinic says 2-3 months. I was told 2 months at Warren Celiac Clinic at UCSD. Mayo clinic tests at 4 weeks but has patients continue eating gluten up to 6 months if they are seronegative at 4 weeks. You know better than them?

The study you linked supports a 4 week challenge ONLY if you can retest later like Mayo does. Notice that one subject in a cohort of only 8 was negative at 4 weeks, suggesting that a longer timeframe to develop TTG is probably not rare. Even if 1 in 8 were accurate, which it isn't because this cohort is too small, do you want to give 1 in 8 people on the board bad advice by telling them to challenge only 4 weeks? I find that unconscionable.
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#805779 Anyone Else Unable To Eat Fruits And Veggies And A Whole Bunch Of Other Food?

Posted by on 23 June 2012 - 11:51 AM

You might look into salicylate intolerance. :)
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#805739 I Think I Need To Eat Gluten For Blood Test

Posted by on 23 June 2012 - 10:27 AM

Sorry, but most celiac clinics say to eat 4 slices of bread worth of gluten daily (or a typical full gluten diet) for 2-3 months before a blood test to have a reasonable chance of a positive result. The antibodies in DH are in your skin, not your blood, and a fair number of people with DH continue to have flareups for quite a while after going off gluten. Going low-iodine helps a lot of people with DH.

There is a slim chance you could have a positive blood test if you have a lot of symptoms, but if you're not deliberately cheating on the diet it would be unusual. Most people don't get antibodies from making a good effort at the diet and only occasional CC, even if they do have some GI symptoms. Also, if you need an iron-clad diagnosis you will have to eat gluten for long enough to have a positive small intestinal biopsy as well as blood antibodies.

If you are sure your rash is DH, you are celiac. Dermatitis herpetiformis is autoimmune and ONLY shows up in celiac disease. Your best bet for a traditional documentation of celiac disease is to get the DH biopsied next to an active lesion to document the skin IgA deposits.

To be honest, I'm not sure why you are seeking more diagnosis when gluten so obviously wrecks you. In the US that piece of paper can be more of a curse than a blessing because it gets you the chance of being declined for insurance. Gluten challenges are not something to undertake lightly when you're celiac. We've had some board members get very ill and experience permanent declines in their health trying to get positive blood tests.

I'd see if your naturopath would document the celiac, maybe based on the presence of DH, genetics, stool/saliva, and symptom remission on the gluten-free diet.
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#805239 Disturbing Message From Kraft

Posted by on 21 June 2012 - 09:37 AM

I called back and the woman said she wouldn't recommend trying it because the flavorings might contain it. She said the suppliers only have to tell them if there's wheat in the product so they're not sure if it has other forms of gluten or not. I don't know, I use Kraft products but both responses surprise me, I was under the impression that if it has gluten, it'll say it, but if their suppliers only have to tell them if there's wheat then that seems like it could be risky. At least with the BBQ sauces, obviously there's a lot of products like Oscar Meyer and such where there's nothing to worry about.

If somebody else wants to ask, they can, the bar code is 21000 67916.

I don't think these reps know what they're talking about. The chances of finding barley or rye hidden in natural flavorings is slim to none. The only possibility is barley malt, which I've never seen in BBQ sauce. Also barley malt is expensive so it's usually listed separately as a luxury ingredient.

I'd be willing to bet the "gluten" in the natural flavorings the first rep saw was monosodium glutamate. A lot of people who are poorly educated about the diet find the world glutamate confusing.

By the way, Sweet Baby Ray's BBQ sauce is really good and gluten-free. :)
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#804103 Unsupportive Spouse

Posted by on 17 June 2012 - 07:53 AM

Thanks for all the support. He really is a self-centered jerk, and I know I need to leave. It's just a matter of getting up the courage to do it. I've left before and thought it would be easier should I have to leave again. Not so. It's just as hard as before. At least this time I won't go back. I made the concious decision last time that I would only go back once, and that was to allow for trying my hardest to make it work. Counseling didn't do much. It just gave him good material to preach to everybody else, which makes him sound like he does all of that himself and is such a great guy. Blah!

You poor thing! He sounds as narcissistic as my ex. How the heck did we pick these guys? I know how hard it is to leave because I stuck around for six months after he quit therapy and told me it was all my fault, still stubbornly refusing to admit my marriage had failed. It really sounds like you need to get it over with and leave. I know there's a bit of mental trauma in a divorce and that it's a hard thing to look at because I was in your shoes, but the sooner you get going, the sooner you will have your life back!

If you need a little moral support, it sounds like you have friends who would jump at the chance to help you move out. You can also call a sheriff and make an appointment to be escorted out of the house if you are afraid he might lose his temper and hurt you.
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