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Nyxie63

Just One Bite

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You know how if sometimes you have an owie, you just have to poke it from time to time to see if it still hurts? Well, that's what its like right now.

I'm self dx'd due to my reaction to the wheat challenge a little over a week ago . Other than that, I've been gluten-free for a month. There's a part of me that really doesn't want to accept this and thinks "just one bite couldn't hurt". Sometimes its almost overwhelming. Its like I want to poke the owie to see if it still hurts. Logic tells me it'll still hurt, but I still want to poke it. Does that make any sense?

Now before you yell at me... No, I'm not going to do this. There's no way I want a repeat of the wheat challenge reaction.

But the urge is there.

Did anyone else go through this? Feeling the need to test yourself just one more time more before fully accepting the reality of this new dx?


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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Celiac.com Sponsor (A8):

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I frequently feel that way, particularly when I'm feeling well. Unfortunately, I have been accidentally glutened enough times ... and seen the result ... so my better judgement comes into play.

I did try to test casein recently. Although Enterolab says it is a permanent intolerance, I read here about someone who reached the point after some months of being able to tolerate it. I didn't eat much, just a trace in something I ordered at a restaurant.

Ah, stupidity. I won't be doing that again :(

I also tested soy the same way. Same result.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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You know how if sometimes you have an owie, you just have to poke it from time to time to see if it still hurts? Well, that's what its like right now.

I'm self dx'd due to my reaction to the wheat challenge a little over a week ago . Other than that, I've been gluten-free for a month. There's a part of me that really doesn't want to accept this and thinks "just one bite couldn't hurt". Sometimes its almost overwhelming. Its like I want to poke the owie to see if it still hurts. Logic tells me it'll still hurt, but I still want to poke it. Does that make any sense?

Now before you yell at me... No, I'm not going to do this. There's no way I want a repeat of the wheat challenge reaction.

But the urge is there.

Did anyone else go through this? Feeling the need to test yourself just one more time more before fully accepting the reality of this new dx?

YES!!!! Omg, I completely agree, this is one drawback of being self dx'd (I am too.) I've been gluten-free for a few months now, and while I haven't really had any gluten withdrawal symptoms... I constantly am having to restrain myself from re-checking, and re-testing myself. I'm so used to thinking my symptoms are psychological!

I've gotten accidentally glutened a couple times, and that seriously should have been enough to get it through my head. Never the less, I have poked the owie a couple times... :angry: and it hurts worse every time I do it.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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I've gotten accidentally glutened a couple times, and that seriously should have been enough to get it through my head. Never the less, I have poked the owie a couple times... :angry: and it hurts worse every time I do it.

HAHAHAHAHAHA!!!!!! We don't have small children, really..............

It's ok, me and my boyfriend say potty and we don't even have kids.


If you're going through hell, keep going. ~Winston Churchill

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Thank you!

Its nice to know I'm not the only one who feels the need to poke the owie. :D

-------------------

LOL JNB! Hubby and I don't have kids either but we use terms like potty and owie too. Then again, we both still love crayons and coloring books and playing with bubbles too!

Thank goodness maturity is optional. ;)


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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It is a very common feeling. I admit that I get that feeling still very frequently, if we are at the County Fair and you smell funnel cakes or you are walking through the mall and smell Auntie Ann's.

I always try my hardest to tell myself, remember what you went through and how far you have came.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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Thank you!

Its nice to know I'm not the only one who feels the need to poke the owie. :D

-------------------

LOL JNB! Hubby and I don't have kids either but we use terms like potty and owie too. Then again, we both still love crayons and coloring books and playing with bubbles too!

Thank goodness maturity is optional. ;)

I know! we still play Uno and paint with watercolors, whenever my boyfriend plays with his legos (we're 23, by the way) I sing the Toys'r'us theme at him.

I do that 'poke the owie' thing too, but have not ever felt tempted with gluten. I'm self diagnosed too, but a glutening takes too much away from me. I think you may find that this feeling fades with time. Try to keep some Whole Foods cookies (gluten-free Bakehouse choc chip are UNBELIEVABLE, my uncle fights me for em) and something crunchy around to fight the urge!

Oh, I wanted to mention, don't go too crazy with the low-cal mentality for a few months. You need those calories to repair your body, you need the nutrients. Like we were talking about though, try to get them from raw dairy and goods veggie fats and organic meats. You're right about the bread, it won't really provide any nutrients.


If you're going through hell, keep going. ~Winston Churchill

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Manda,

I guess its not so much a matter of wanting a forbidden food as much as wondering if I'm really GI or not and wanting to test it (again) for my own satisfaction. My dx was made by a single measly challenge with cream of wheat. My dr has taken my word regarding the reaction and has no interest in pursuing testing as confirmation. I should be thankful for that, but a huge question mark still hangs over my head like a little black cloud. A couple of accidental glutenings will probably help to clear all that up.

------------------------

JNB,

LOL! Hubby and I are in our 40s and still do that! Like I said, thank goodness maturity is optional. ;)

I've recently discovered Pamela's Pecan Sandies. Oooooh! A little greasy for my taste, but ITS A COOKIE!!!! :P Those things are dangerous.

I guess I worry more than I should about the calorie content of food. I've lost quite a bit of weight (started at 185 and am now down to 167) and don't want to go back up again. In spite of the occasional commercially-processed gluten-free goodie, I'm still sticking with a good basic diet. The great news is that I haven't had to take the Omeprazole (for reflux) in almost 2 weeks! The combination of the gluten-free diet, digestive enzymes, and probiotics must be working. And no stomach cramps since switching over to white rice. Yay! And thank you! :)


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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Your body probably had the starvation: save everything! reaction. Some people, when not absorbing nutrients, will save every calorie, valuable or not. Some people will lose all their weight, the stereotypical celiac (me). Even though you're getting more calories, you're getting the nutrients you need now, so your body won't hold on to all those unnecessary calories now.

I still think you should wait a while longer and have a bit of barley soup or something. Just to see if it's Celiac or wheat. Although that was quite humorous, that a couple of accidental glutenings should clear things right up for you!


If you're going through hell, keep going. ~Winston Churchill

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I still think you should wait a while longer and have a bit of barley soup or something. Just to see if it's Celiac or wheat. Although that was quite humorous, that a couple of accidental glutenings should clear things right up for you!

Yeah, I think you're right. To be honest, I'd rather be wheat-intolerant than gluten-intolerant. At least that way I wouldn't be quite so limited. I'm also hoping once the deficiencies and dysbiosis are cleared up, my reaction won't be quite as severe either. I really don't want to have to carry around an epi pen the rest of my life. <_<


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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I jsut wanted to say. There is someone on this board who had a Gluten Intolerance (NOT celiac) and it was a product of another health problem. Now that she has "fixed" the other problem, she is able to eat gluten. She told me that it is NOT as good as she remembers...at all!

I thought this might help. Personally, I think I get more bummed about the other intolerances than I do gluten. I also think most of the time we miss the convenience of eating gluten. Before we could go anywhere and not bring food, now we have to bring food wherever we go or call ahead, etc.

Hang in there! It is totally normal to feel what you are feeling.

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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