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radman

How Strict Do We Need To Be?

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That's exactly what happens to him- he mentioned the tongue thing last night. Intriguing? He was diagnosed with a wheat allergy when he was younger (multiple allergies actually) but according to his pediatrician years ago- he outgrew them. maybe not?

Tounge tingling is a clasic food allergy reaction.


- Vincent -

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Tounge tingling is a clasic food allergy reaction.

:o Oh crumbs!-G.F of course.

Didn't know that about the tongue tingly thing.

I might add that my eczema is markedly improved post G.F.

Wonder if my hayfever will be as severe this year?


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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:o Oh crumbs!-G.F of course.

Didn't know that about the tongue tingly thing.

I might add that my eczema is markedly improved post G.F.

Wonder if my hayfever will be as severe this year?

From The Food Allergy and Anaphylaxis Network:

(http://www.foodallergy.org/questions.html)

What are the common symptoms of a reaction?

Symptoms range from a tingling sensation in the mouth, swelling of the tongue and the throat, difficulty breathing, hives, vomiting, abdominal cramps, diarrhea, drop in blood pressure, and loss of consciousness to death. Symptoms typically appear within minutes to two hours after the person has eaten the food to which he or she is allergic.


- Vincent -

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Hi all.

Yes, I do think my gut will "complain" when it gets a level of gluten which will cause damage. It will be very easy for me to know, since my bowels have been so different ever since going gluten free. I think I'll eat a nice big Sierra Turkey on Focaccia at Panera Bread for my challenge.

I wouldn't say I don't have villi damage, I'm sure I did with my previous diet. But enough healing apparently occurred within a few days for my malabsorption to completely abate. However, if I find that my symptoms after a gluten challenge are no more severe than they were with my previous glutenous diet, I may occassionally cheat. I wouldn't do this often, because I know that it will cause some villi damage. It will be minor, however, compared to the 2-3 years of daily high dose gluten intake and subsequent damage I got before I figured this out.

Again, I'm not suggesting anyone else do this. It's just my own thinking. If my symptoms increase then I won't be able to do it.

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Beverly -- my husband just did the same thing! He has been gluten-free with me (pretty much exclusively), has a little gluten now & then. He went to Buckheads for lunch today -- don't know what he ate, because he came in clammy & sweaty, with body aches. He said that, about an hour after lunch, he started with the big D that didn't stop. He's NOT celiac. I think it's pretty interesting that gluten can do that to him . .. . .


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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Beverly -- my husband just did the same thing! He has been gluten-free with me (pretty much exclusively), has a little gluten now & then. He went to Buckheads for lunch today -- don't know what he ate, because he came in clammy & sweaty, with body aches. He said that, about an hour after lunch, he started with the big D that didn't stop. He's NOT celiac. I think it's pretty interesting that gluten can do that to him . .. . .

Lynne! Good to see you're on!!! Are you back yet, or just visiting? :)

Is the computer still sick?


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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Beverly -- my husband just did the same thing! He has been gluten-free with me (pretty much exclusively), has a little gluten now & then. He went to Buckheads for lunch today -- don't know what he ate, because he came in clammy & sweaty, with body aches. He said that, about an hour after lunch, he started with the big D that didn't stop. He's NOT celiac. I think it's pretty interesting that gluten can do that to him . .. . .

Interesting as well that we(non coeliacs) only started to feel these adverse affects after we were low gluten/G.F.

No effects at all when I ate high amounts of gluten everyday.


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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But what does it mean? Does going off gluten cause a higher degree of gluten sensitivity no matter where you were on the spectrum before going off gluten?

I don't think other allergens do this. I went off nuts (all right, I am nuts) for a couple of years after getting married as my husband is allergic. I never had problems when I started eating them again.

This brings me back to a question I asked a few weeks ago: For those of us who have silent or nearly silent celiac (or are just pre-celiac) are we better off gluten-light rather than gluten-free? Is it better to consume small amounts that may or may not be doing damage, or to consume zero, but have huge and obviously damaging reactions when occasionally glutened by accident or by cross-contamination?

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This brings me back to a question I asked a few weeks ago: For those of us who have silent or nearly silent celiac (or are just pre-celiac) are we better off gluten-light rather than gluten-free? Is it better to consume small amounts that may or may not be doing damage, or to consume zero, but have huge and obviously damaging reactions when occasionally glutened by accident or by cross-contamination?

Absolutely better to consume zero gluten...you should be able to keep cross-contamination to a very minimum...hopefully next-to-never amount. And no one wants to go through the horrible experience of getting sick from CC...but at least it can help identify the source.

I have experienced the sensitivity to reintroducing foods besides gluten. Not the exact same thing, but similar in nature... I used to give up sugar, candy, sweets for lent--I was a huge candy lover. On Easter, I would start eating candy and get sick to my stomach... I couldn't tolerate the amount I was used to eating in one sitting anymore...my body wasn't used to it. Major sugar hang-over...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Radman,

You state,

I may occassionally cheat. I wouldn't do this often, because I know that it will cause some villi damage.

and you also state

I do think my gut will "complain" when it gets a level of gluten which will cause damage.

So basicly, if I understand your view correctly, your saying "I do not care if I do damage to my body, nor do I realy care about symptons so long as I can occasionaly have gluten with out dieing, I plan to"

That about sum it up?


- Vincent -

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Beverly -- my husband just did the same thing! He has been gluten-free with me (pretty much exclusively), has a little gluten now & then. He went to Buckheads for lunch today -- don't know what he ate, because he came in clammy & sweaty, with body aches. He said that, about an hour after lunch, he started with the big D that didn't stop. He's NOT celiac. I think it's pretty interesting that gluten can do that to him . .. . .

Why are you so sure he is not gluten intolerant or celiac? Sounds like he had a positive reaction to a gluten challenge to me. My husband was sure he wasn't too, I bullied the doctor into doing a celiac panel and guess who came up a low positve.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Why are you so sure he is not gluten intolerant or celiac? Sounds like he had a positive reaction to a gluten challenge to me. My husband was sure he wasn't too, I bullied the doctor into doing a celiac panel and guess who came up a low positve.

I thought the same thing--don't 97% of Celiacs go undiagnosed? Makes sense that there would be lots of people all around us that are affected. Something to think about :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Why are you so sure he is not gluten intolerant or celiac? Sounds like he had a positive reaction to a gluten challenge to me. My husband was sure he wasn't too, I bullied the doctor into doing a celiac panel and guess who came up a low positve.

Well yes,I have thought 'Could I be a coeliac too-maybe I was a silent coeliac.'

However,as I'm gluten-free now,no point in going for blood tests and in my experience even when you're seriously ill (as hubbie was)it's the last thing doctors want to do/look for.

If I had the money,I would be really interested in getting the gene test though!


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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Lynne! Good to see you're on!!! Are you back yet, or just visiting? :)

Is the computer still sick?

I'm ON!! I got my computer back . . . I'll tell you, I purchased an extended warranty from Toshiba rather than from the store -- I paid about another 30-50 dollars for the "deluxe" warranty! It all ended up being about $200. After owning this computer for three years, I got a new LCD screen, a new motherboard, and a new "case" -- the bottom part of the laptop, including a new mousepad & buttons and keyboard -- at no cost. Not bad, huh??? I'm now an advocate for purchasing your extended warranty from the COMPANY, not the store!

BTW: I just had the gene panel done; I had HLA DQ2 and DQ8 -- LabCorp, the laboratory that is most prevalent here, didn't have the ability to perform HLA DQ1. I also had the SpinoCerebellar Antibodies done -- but my co-pay is going to be at LEAST $1299. I told them to cancel it -- I didn't have that kind of money right now -- we know that I have ataxia -- I don't know that we need to know the EXACT type. (maybe, maybe not) I'll let you know how much they charge for the Celiac Genetic testing here . . . . .


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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I'm ON!! I got my computer back . . . I'll tell you, I purchased an extended warranty from Toshiba rather than from the store -- I paid about another 30-50 dollars for the "deluxe" warranty! It all ended up being about $200. After owning this computer for three years, I got a new LCD screen, a new motherboard, and a new "case" -- the bottom part of the laptop, including a new mousepad & buttons and keyboard -- at no cost. Not bad, huh??? I'm now an advocate for purchasing your extended warranty from the COMPANY, not the store![/qote]

Laptops are the one and only case that I suggest ppl get extended warrentees. On all my Dells, I get therie "complete care" warrentee and I have literly repalced my laptop multiple times in the 3 year period, for free. For example, one time I droped mine and just the right angle to snap the LCD right off the laptop. Sent it to them ang got a new screen+case for freee. It is the one and only expectiopn I have found to the NEVER BUY EXTENDED WARRENTEE rule. :)


- Vincent -

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Hi all (and especially Radman),

As a not-yet-diagnosed possible celiac (waiting on bloodwork results), I read this thread with interest.

In hunting around the web for information about celiac I ran across the following report, which might be of interest to those who want to know the current "medical evidence" stuff about celiac (I read parts of this with interest, though it conflicts with some of what's been posted here, and I am also sympathetic to the idea that doctors don't always "get" what patients' experiences should tell them) -- http://www.ahrq.gov/downloads/pub/evidence...liac/celiac.pdf.

-- Alexandra

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Hi all (and especially Radman),

As a not-yet-diagnosed possible celiac (waiting on bloodwork results), I read this thread with interest.

In hunting around the web for information about celiac I ran across the following report, which might be of interest to those who want to know the current "medical evidence" stuff about celiac (I read parts of this with interest, though it conflicts with some of what's been posted here, and I am also sympathetic to the idea that doctors don't always "get" what patients' experiences should tell them) -- http://www.ahrq.gov/downloads/pub/evidence...liac/celiac.pdf.

-- Alexandra

The link does not work. Tried the base page and that's fine but can't go any further than that.

Even search yields the "white screen of Internet death"!


Franceen

Diagnosed DH by Allergist via gluten-free Diet Success

Gluten-free since Dec 2005

Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months

No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!

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The link does not work. Tried the base page and that's fine but can't go any further than that.

Even search yields the "white screen of Internet death"!

Franceen,

Ugh -- sorry! It does work for me (honest -- like, I just re-clicked the link in your reply to my post and went straight back to where I was, which is a 906(!) page PDF about celiac disease (a lot of that is appendices and references, though).

My best guess is maybe because I am logging on using my work computer which has an IP address associated with a research university (including a medical school), I can access it -- I often get "subscription" access to things this way (without necessarily even knowing it) -- because it's the school that's suscribed, not me.

There's a summary of the same report here: http://www.ahrq.gov/clinic/epcsums/celiacsum.pdf. Don't know if that will work or not.

The whole long report wouldn't be interesting to people not inclined to read mind-numbing reports of numerous medical studies, and it might not interest people skeptical of doctors' overall understanding of celiac disease, either. But the summary does say, "...printed copies may be obtained free of charge...by calling 800-358-929. Requesters should ask for Evidence Report/Technology Assessment No. 104 Celiac Disease." Hope that helps and sorry you are having problems with the link.

-- Alexandra

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I will try it using my work computer from a .edu IP also. And I also have a .mil which I will try it from.

I work for Naval Posgraduate School at an Army base and have all 3 IP's .navy.mil, .nps.edu and .army.mil.

I can do it from here, but too late. Will try tomorrow. Thanks for the info. anyway. I am in similar boat as you getting diagnosed for DH (Dermatitis Herpetiformis - the skin version of Celiac). Blookwork was negative - but I was gluten-free for 4 months prior with only a minor challenge several weeks prior. The skin biopsy was also neg but I suspect the Dr. took the wrong spot for the wrong test. I have gastroenterologist appt next week. So, still studying dx tools.

Franceen


Franceen

Diagnosed DH by Allergist via gluten-free Diet Success

Gluten-free since Dec 2005

Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months

No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!

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The link does not work. Tried the base page and that's fine but can't go any further than that.

Even search yields the "white screen of Internet death"!

It works ok for me and I'm on a home computer.

Do you have Adobe Acrobat on your P.C to read PDF files?


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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It works ok for me and I'm on a home computer.

Do you have Adobe Acrobat on your P.C to read PDF files?

Yup have full version of Adobe Acrobat (V.7 too). I don't even get that far to where the doc. is.

I am not getting the error 404 (forbidden).

Maybe the site was down when I tried.

I'll try again in a little while. At work now, on a .mil IP.


Franceen

Diagnosed DH by Allergist via gluten-free Diet Success

Gluten-free since Dec 2005

Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months

No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!

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Nope. I get the same problem.

I get the "This Page Cannot Be Displayed" that says there is a problem with the page.

The error page comes up immediately.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Works for me. Scott has told me to be careful about what I copy and paste onto the forum, so I don't violate any copyright laws... otherwise I would gladly copy and paste the text to the forum. I guess just e-mail me if you want to see it and I can copy and paste the text into a word document for you.

If you want a hardcopy of the whole report, though, it says at the end that you can obtain one for free (as of July 2004--don't know if it's still available):

The full evidence report from which this summary was taken

was prepared for the Agency for Healthcare Research and

Quality (AHRQ) by the University of Ottawa Evidence-based

Practice Center, under Contract No. 290-02-0021. It is

expected to be available in July 2004. At that time, printed

copies may be obtained free of charge from the AHRQ

Publications Clearinghouse by calling 800-358-9295.

Requesters should ask for Evidence Report/Technology

Assessment No. 104, Celiac Disease. In addition, Internet users

will be able to access the report and this summary online

through AHRQ’s Web site at www.ahrq.gov.

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