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Dr. Said To Try Eating A Little Wheat


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#1 mcle8232

 
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Posted 02 June 2005 - 12:13 AM

I originally sent this to Dr. Fine, but it keeps bouncing back as "undeliverable".

Do you have a moment to help me out? I'm a Ph.D. chemist, and no book (I've read many) or doctor (seen many) has been able to explain these things to me so far:

I was diagnosed 2 years ago by bloodwork (2 out of 3 sera tests were positive) and a follow-up biopsy showing partial villous atrophy. I've been 2 years on a strict gluten-free diet (felt great at first, major improvement!) but currently I have symptoms (diarrhea, fatigue, joint/bone pain, migraines...). I eat only at my home, foods that are labeled "gluten free" and I do not eat dairy at all.

Today my chiropractor suggested I try and see what eating wheat will do (we are trying to figure out what I CAN eat with a newly discovered candida issue on top of celiac). She said that now with no antibodies showing up at all for the celiac panel or food sensitivity tests, she wonders if it is celiac at all! My response was that since I've been on a gluten-free diet for 2 years now, my body is not producing IgG to gliadin. The memory cells though, she said, would still show a response on the immunolabs tests for delayed reaction to wheat, rye and barley. All celiacs, she said, show up ...even on a gluten-free diet.

I recently had a biopsy (1 month ago) and it showed blunting of the villi, though as I said the celiac panel bloodwork was "normal". My PCP does not understand it, saying I should have seen a positive serum result if gluten intake is indeed what is causing the blunted villi in my latest biopsy results. My GI doc says "be more cognizant of gluten intake" because he is sure that unintentional injestion of gluten is the cause.

Any of this making sense? What can you conclude?

Currently gnawing on celery (lol)
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Megan
confirmed celiac
bloodwork/endoscopy positive
gluten-free since July 2003

Baby boy (Nathan) born Feb 2nd 2006

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#2 skbird

 
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Posted 02 June 2005 - 01:23 AM

OK, going about this not as a chemist but as a former attempted physicist... ;)

Here's what I think could be going on, but it's just theory.

From what I understand, your blood test values *should* go down, to prove that you are following the gluten-free diet. So no gluten, then you should have no antibodies. So that seems apropriate. If you recently had a biopsy and still have blunted villi, maybe you had such extensive damage that it is just taking a while to repair itself, even if that means a couple of years. I don't know how long it takes to repair but I have heard of people saying 8 months after they started eating gluten-free they still had damage.

It would seem if you are still having symptoms *but* eat only your own food, etc, then you are just taking a long time to heal. Candida has been mentioned on this board as causing a lot of the same symptoms as Celiac so that could also be the reason.

I will say though that if you had a biopsy a month ago and have blunted villi you should *not* try eating some wheat. Since the biopsy is considered this gold standard but blood tests are imfamous for false negatives, I would put more faith in the biopsy.

I hope this helps. I know that when I get lab info or doctor info it puts such a zap on me I can't reason it out until I bounce it off of someone else...

Take care

Stephanie
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Diagnosed by food challenge, 10/04
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Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#3 VegasCeliacBuckeye

 
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Posted 02 June 2005 - 03:43 AM

It is also possible to be gluten intolerance but not have Celiac Disease (some people do not have positive tests), the gluten-free diet helps their lives just the same....

Food for thought......
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#4 KaitiUSA

 
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Posted 02 June 2005 - 04:22 AM

I would say that it may not be celiac just an intolerance BUT the biopsy was positive...and it's damaging her intestine.

Is there any way that gluten was slipping into your system? Through products, kissing, anything? I mean any way possible should be looked at.

I'm not sure why it would not show up in the blood(unless you are IgA deficient) then that would make the test negative when it should be positive.
Which tests did you have done with bloodwork?
You could have got a false negative....unless you got a tTG and EMA test done(which is not usually in the doctors basic celiac panel)..those are very specific and would detect it in the blood
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Kaiti
Positive bloodwork
Gluten-free since January 2004
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#5 Guest_Eloisa_*

 
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Posted 02 June 2005 - 04:44 AM

I'd be careful about consuming any wheat at all. If you do and you bloat up and have diahhrea, nausea, and the needling stomach pains your bound to be a celiac. Being that the villi is still showing damage its typical that either you haven't completely healed or your still getting exposed maybe even in your own home. Check products such as makeup, shampoos and soaps and household stuff. Make sure that you have a current list of ingredients that can expose you. Also make sure that if you live with anyone else in the house that they don't come in before you and lets say toast bread in your toaster or use a griddle for some type of bread thing. It can easily happen. My kids have a tendency of toasting bread and leaving the endless crumbs all over the counters and in the butter. If you do have this situation then keep your stuff separate from their stuff. You need something to hurry up and clear out whatever you have in your system. You could try that Specific Carbohydrate Diet that everyone is doing cause it seems to be working on me and I've only been on it a few weeks.
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#6 VydorScope

 
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Posted 02 June 2005 - 04:49 AM

What about MSG? Friend of mine thought he was Celiac, but eventually detrmined it was MSG that he was reacting to, and MSG is in most of the same products that Gluten is in. I have my notes on what he siad about it back at my office, and I could tell you more tommmorow if you like.
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#7 Guest_Eloisa_*

 
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Posted 02 June 2005 - 05:13 AM

I stay away from MSG cause I get same reaction and it triggers migraine headaches. I've seen it on my nutritionist's list as possibly containing gluten.
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#8 Peaches503

 
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Posted 02 June 2005 - 06:58 AM

I also had an issue with antibodies showing up while being on a gluten-free diet. My doctor and his nurse have been doing research and have recently put together another panel of blood tests for celiac. They are going to be testing me for more antibodies, including the TtG test. When I asked him if the results would be affected by being gluten-free, he said no.

After more explaining, I understand why. He said that the TtG test will probably be affected, but the other things he is testing for will show up if I have it. He said that if I have celiac, the antibodies will always be there, as a delayed reaction, even though I'm not having an "immediate" reaction to gluten. He explained it like this: If you've ever had chicken pox, you only get them once. However, once you get them, the antibodies remain in your blood forever. So, I had them when I was 7, but, if I was tested for that antibody now, I would have it because it remains in my immune system. Because those antibodies remain, that's why I only get chicken pox once in my life (and everyone else, unless immune). With celiac, once you get the antibodies, they are always there because they are in "delayed" response. So, celiac is not like chicken pox in that you "only get it once" it's just that once it's been activated, the antibodies will always be there (or I should say, certain TYPES of antibodies).

I know this seems confusing, but the way he explained it was very clear. I was very persistent too, and I was challenging his every explanation, and he did a very good job at combatting me, so I trust his explanation. If your chiropractor thinks that you should test for something else, then maybe you should. Or, at least have more blood work done that tests for these antibodies. I'm still waiting for my results, so once I get them, I will let you know how accurate the tests are because I've been strictly gluten-free for 2 months before having this test, so, if these certain antibodies show up, then the test does work.

Good luck!
-Peaches
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Blood test diagnosed with celiac disease 3/05
gluten-free since March '05

#9 jknnej

 
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Posted 02 June 2005 - 06:35 PM

Does anyone have a list of things MSG is in? I have migraines and would like to attempt to stay away from it....
what is it listed as on labels?
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#10 tarnalberry

 
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Posted 02 June 2005 - 08:18 PM

My opinion (physicist here, but I took a lot of p-chem and bio) is that you have celiac, and no, the blood tests are no longer going to show antibodies (there's got to be something there to react to). As for the still damaged villi - two options: 1) you are slow at healing; not everyone heals quickly, 2) something else is causing the enteropathy - there are other things, even - rarely - milk.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
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#11 bean

 
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Posted 02 June 2005 - 09:35 PM

I would highly suggest *not* eating wheat to expand the possibilities of what you can eat - especially if you have been diagnosed with celiac in the past! Try expanding your diet with anything but that! I know it's rough - I can't eat gluten, dairy, eggs, sesame seeds - etc. - *and* I have candida so I'm trying to avoid sweets too!

Please check this out before you do anything:


Dr. Nieuwenhuizen, from the research group TNO Nutrition and Food Research, published a paper in the June, 2003, Lancet. He links celiac disease with Candida albicans. Dr. Nieuwenhuizen, knowing the actual sequence of proteins which trigger celiac disease from the published work of other scientists, had searched the databases available to him through TNO to see if the same sequence existed in other places. It turns out the identical sequence of proteins occur in the cell walls of Candida albicans. [15]

If Candida can trigger the same chemical and immunological reactions as wheat gluten do we can imagine a number of interesting implications.
First, in people with celiac disease, symptoms usually get better rapidly when they eliminate gluten from their diet. This isn't always the case. Even without gluten some people continue to have symptoms. They may have intestinal Candidiasis. The Candida in their gut may be acting like gluten and continues triggering symptoms.

Despite having a gluten free diet, your body may be identifying candida as wheat gluten and causing problems because of that. The link to the page I just referenced is: http://www.denvernat...ews/celiac.html You might consider copying it and taking it to your doctors for their interpretation. My doctor was quite amazed by it.

Please don't start eating wheat again! Take care of yourself!! :)
- Michelle :wub:
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

#12 Guest_nini_*

 
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Posted 03 June 2005 - 01:43 AM

UMMMMMM HELLO, I work for a chiropractor and I am HORRIFIED that one would suggest something that is OUT OF THEIR SCOPE OF PRACTICE. This chiropractor has NO BUSINESS telling you to try to add wheat back in to your diet "just to see what it would do" that is just asinine IMO and just asking for trouble. Once diagnosed with Celiac, you are ALWAYS Celiac and can NEVER consume wheat or gluten ever ever again. For a chiropractor to recommend this is irresponsible and ignorant. A chiropractor is NOT a nutritionist or even a specialist in Celiac. My boss would NEVER recommend something outside his scope of practice.

Be very careful of Dr.s that are NOT well versed in the ins and outs of Celiac recommending anything other than referring to a specialist.

Who you need to be discussing this with is your Gastroenterologist. Not your chiropractor. I'm sorry, but as a Celiac WORKING for a Chiropractor this just really gets my gall up.
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#13 bean

 
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Posted 03 June 2005 - 01:49 AM

UMMMMMM HELLO,  I am HORRIFIED that one would suggest something that is OUT OF THEIR SCOPE OF PRACTICE. This chiropractor has NO BUSINESS telling you to try to add wheat back in to your diet "just to see what it would do" that is just asinine IMO and just asking for trouble. Once diagnosed with Celiac, you are ALWAYS Celiac and can NEVER consume wheat or gluten ever ever again. For a chiropractor to recommend this is irresponsible and ignorant. A chiropractor is NOT a nutritionist or even a specialist in Celiac.

Be very careful of Dr.s that are NOT well versed in the ins and outs of Celiac recommending anything other than referring to a specialist.

Who you need to be discussing this with is your Gastroenterologist. Not  your chiropractor.

Amen!
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#14 Carriefaith

 
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Posted 03 June 2005 - 04:31 AM

I was diagnosed 2 years ago by bloodwork (2 out of 3 sera tests were positive) and a follow-up biopsy showing partial villous atrophy.


From those results I would say that you indeed have celiac disease. That is 3 postive results out of 4.

I've been 2 years on a strict gluten-free diet (felt great at first, major improvement!) but currently I have symptoms (diarrhea, fatigue, joint/bone pain, migraines...). I eat only at my home, foods that are labeled "gluten free" and I do not eat dairy at all.


I recently had a biopsy (1 month ago) and it showed blunting of the villi, though as I said the celiac panel bloodwork was "normal".


This could mean a few things:

-maybe there is enough gluten slipping into your diet to cause villi damage but not enough to raise the antibodies in the blood. Maybe your food is contaminated? I would verify all your products with the companies or from others who have verified. A while back, I thought I was 100% gluten free and still wasn't getting better, however, I was eating gluten free humpty dumpty chips that were contaminated on the production lines. Once I stopped eating those I starting seeing major improvements! Also check things like suncreen, make-up, shampoo, conditionar, styling products ie. anything that goes near your face!

-I hate to say this, but in VERY rare cases the villi in some celiacs cannot heal. This is called refractory celiac disease. However, I think these is more of a chance that you are getting hidden gluten or unknown contamination.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#15 Guest_Eloisa_*

 
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Posted 03 June 2005 - 07:15 PM

Does anyone have a list of things MSG is in? I have migraines and would like to attempt to stay away from it....
what is it listed as on labels?

Monosodium Glutamate. Its in some spices like Accent and in lots of chinese foods.
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