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Lynayah

Symptoms: Do They Heighten (after Accidental Ingestion) Once Gluten-free

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Since there were no replies, I moved this post to post-diagnosis. Thank you! Here it is again for reference:

I am currently eating gluten every day in preparation for a Celiac test in August.

Prior to this, I would have days where I would eat gluten and days were I would not. Some days, I thought I wasn't eating gluten but in fact was probably eating hidden gluten - and on those days I would be symptomatic.

Then I studied about true gluten-free eating, and for a two week period I tried to go gluten-free.

During those two weeks, I accidently ate gluten twice, and my body exploded with GI problems.

Then, University of Chicago told me that I needed to eat gluten every day -- a couple slices of bread would do, in preparation for the test.

For the first couple weeks, I was really uncomfortable, but now my heightened sensitivity seems to be less, which I find confusing to say the least!

My questions:

1- If a person is eating gluten every day is it normal for heightened sensitivity (in some people - I understand everyone is different) to subside a bit?

2- Once a person goes gluten-free, are the symptoms worse if gluten is accidentally eaten?

Thank you,

Lyn

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Yes.

A note about teh two slices of bread: when i did the math, I needed at least 6 slices of bread to add up to 0,3 g per kg. Nowadays they even recommend to increase to 0,5 g per kg per day. You will need to do your own math.

If you weigh 50 kg, you will need to eat 25 g of gluten.

To find the gluten, it is about 90% of the protein content of wheat. (and of bread without added milk)

And the duration, at lest 6 weeks, better three months.

I read some abstracts and the time frame is important, they put young celiacs on a gluten challenge and after some weeks all had relapsed, but only some after four weeks I think I remember.

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Yes.

A note about teh two slices of bread: when i did the math, I needed at least 6 slices of bread to add up to 0,3 g per kg. Nowadays they even recommend to increase to 0,5 g per kg per day. You will need to do your own math.

If you weigh 50 kg, you will need to eat 25 g of gluten.

To find the gluten, it is about 90% of the protein content of wheat. (and of bread without added milk)

And the duration, at lest 6 weeks, better three months.

I read some abstracts and the time frame is important, they put young celiacs on a gluten challenge and after some weeks all had relapsed, but only some after four weeks I think I remember.

Thank you so very much for this information.

Oh my gosh. I hope I wasn't given wrong information -- my doctor's nurse told me the gluten I ate each day "didn't have to be much." This information came from the University of Chicago Celiac Center, and I assumed they were completely up on things.

I've been questioning the amount all along and have been very unsure and confused about so very, very, very much. There's such a hodgepodge of information out there. Augh!

I pray what U of C told me is true. I cringe at the idea of having to start all over again forcing myself to eat poison every day. I am feeling more down than I have felt in years, and it doesn't help that I am gaining weight no matter what I do, which is horribly depressing, too.

Worse yet, we are going to Disney in October and I have been PRAYING AND PRAYING that I'd be able to get my diagnosis before then so I could go gluten-free, be comfortable and have a good time.

I am feeling horribly sorry for myself this morning, for which I apologize. I just gotta say it: PREPARATION FOR THE TEST REALLY STINCKS!

Usually my attitude is more positive but I have been through so very many years of this, finally am just -- with hope -- getting to the other side of it, and I just don't know how many more months of making myself sick I can take.

I can handle the other symptoms but the weight gain has been the breaker for me. I've kept over 100 pounds off for almost 17 years and the fear of having to deal with weight gain until I have to get to the other side of this is very difficult.

Okay, now that I've had my pity party, I'll continue with a better attitude . . .

What you say is excellent informaton and very much appreciated. I just pray that I will get an accurate reading and won't have to start all over again.

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Hi, I did read your other note..

The information about 0,3 g per kg I found here in some article at celiac.com, and the part about 0,5g per kg I found in an abstract at www.pubmed.com .

I think one might get apositive biopsy on less gluten, but it is so individual.

When I went on a gluten challenge, I ate 21 or so g of gluten per day, and my weight went down slightly during the time.....I think it was because it was so much gluten that the villi were damaged. I was hungry all the time too.

But the biopsy was too soon, only 5 weeks. I should have asked for a later date. I thought I had eaten enough gluten in the time before but later realized it was way too little, just occasionally.

I did not have a hard time, but my DH skin sensations returned on the challenge (burning sensation) and just after the cchallenge the neurological sensations returned, and I went gluten-free again. Not fun when the feet and arms disappear (I did not know where they were)

a while ago I had some scio treatment (alternative stuff) and before christmas I was glutenend at a restaurant and the scio said my fatty acids were off. later I was glutened again with the same message from the scio.

Now fatty acids have a lot to do with weight.

I would think you will be able to have a normal weight afterwards when you go gluten-free again.

My weight just kept dropping afterwards.

nora

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Hi, I did read your other note..

The information about 0,3 g per kg I found here in some article at celiac.com, and the part about 0,5g per kg I found in an abstract at www.pubmed.com .

I think one might get apositive biopsy on less gluten, but it is so individual.

When I went on a gluten challenge, I ate 21 or so g of gluten per day, and my weight went down slightly during the time.....I think it was because it was so much gluten that the villi were damaged. I was hungry all the time too.

But the biopsy was too soon, only 5 weeks. I should have asked for a later date. I thought I had eaten enough gluten in the time before but later realized it was way too little, just occasionally.

I did not have a hard time, but my DH skin sensations returned on the challenge (burning sensation) and just after the cchallenge the neurological sensations returned, and I went gluten-free again. Not fun when the feet and arms disappear (I did not know where they were)

a while ago I had some scio treatment (alternative stuff) and before christmas I was glutenend at a restaurant and the scio said my fatty acids were off. later I was glutened again with the same message from the scio.

Now fatty acids have a lot to do with weight.

I would think you will be able to have a normal weight afterwards when you go gluten-free again.

My weight just kept dropping afterwards.

nora

Very interesting, thank you. I have left a message for my upcoming doctor to see if I need to be eating more gluten.

What is SCIO?

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scio is something computer-based (alternative). It has databases of well people and sick people and bacteriae and allergies etc, but not everything....it is often quite right on. (but it did not have glutening in its database I think) (it did mention about the same IgG allergies as the IgG food intolerance test said. Ige is the usual allergy reaction, but IgG is more in-between allergy and auto-immune.

I wonder if they say something about how much gluten in a gluten challenge here: http://www.youtube.com/CeliacDiseaseCenter

nora

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