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Hope That You Don't Mind One More Question

dolly

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dolly Apprentice
dolly
Posted

Hello, You all have been so wonderful answering my questions.

So, here is my situation now. Tomorrow my friend has scheduled for me to get the blood tests done. Then on Monday I am scheduled to see a doctor about the whole issue.

I am really excited to get the blood work done tomorrow because the minute they are done I am never eating gluten again. Today has been physically terrible due to the reintroduction of gluten.

Here is my question.....

I only stopped gluten for 3 days. At the end of that 3 days I felt so much better. But, is that too short of a time span to actually feel better from being off of gluten? Could I just be imagining this?? Or is the improvement in health that immediate at times???

I am asking this because I am waiting for a doctor to hit me with the "it is all in your head" explanation. So, I thought I would ask you all ahead of time how it worked for you.

Thanks again!!!!!

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Centa Newbie
Centa
Posted

Hello, Dolly

If it helps you get some quick context before that appointment in a couple days, yes, I had a reaction that quick. But not all my symptoms improved that quick. I got a pretty dramatic clearing of my mental acuity...I had been very foggy, couldn't concentrate. And it very definitely began to clear by the second day of no gluten, late in the afternoon. But it took a month to see any improvement in sleep. It took two or more for other symptoms to begin to clear.

People react to taking gluten out of the system differently. I hope more people write, since you're gathering info before you get in to see the doc on Monday.

Sounds like you had an unquestionable reaction to gluten.

FranW. Newbie
FranW.
Posted

Hi. I found that I started feeling better within 3 days. I have many, many severe allergies as well as lupus! Going off gluten made a tremendous difference! My PCP as well as my allergist both said, celiac as if they had expected it! ;) No tests, just positive response to diet. My rheumatologist said having multiple auto-immunes is not uncommon. Now, after about 6 months, I started having symptoms, again, so we began looking for another culprit. Turns out it's soy.

BTW, it took about 8 different doctors before I was officially diagnosed lupus. I heard "it's all in your head", "stress", "raising kids", "getting older", you name it. :huh: Finally had enough symptoms at the same time as positive bloodwork, as well as a great trio of doctors!

You know yourself better than anyone - just stick to your guns!

Take care,

Fran :)

dolly Apprentice
dolly
Posted
  • Author

Centra and FranW,

thanks so much for the feedback. My instincts tell me that I have found a huge source of my issues but I just really needed a reality check.

I wrote down which symptoms lightened each day I was off of the gluten. I will take that with me to the doctors. The biggest concrete example I have to give is that I lost 5lbs in 3 days. I have been uncontrollably gaining weight in the last year. To actually lose weight completely indicates that something good is going on.

Anyway, thanks so much for taking the time to share your stories with me. It has really helped to validate me!!!

hathor Contributor
hathor
Posted

Before you go in to get your results, you might look at some of the articles on this site about the accuracy of the testing. False positives are rarely a problem. So given your positive response to the diet and positive blood tests, don't let him talk you into eating gluten again so you can have a biopsy.

False negatives are a problem, though. I believe the rate is 29%, but check that (this may be for one particular test, not the entire battery). You can also have symptoms for years while gluten intolerant and while damage is being done BEFORE the antibodies shown up in your blood. So don't let him foist off that "all in your head" idea.

If you have a negative but want a test result for some reason, you can always go with Enterolab. Their testing is supposed to be more sensitive and to show a response before the antibodies have had the time to build up in one's blood. You also don't have to be consuming gluten for accuracy. Your doctor may or may not accept the results, but it doesn't make any difference really. What is important is feeling better.

One benefit to Enterolab is that you can also have testing done for some other intolerances. Many, many folks react to things in addition to gluten. Dairy is a very common problem, as is soy. They don't get completely better until they find and deal with all their intolerances.

To answer your question, I immediately felt better, but not completely better. Actually, the first few weeks ended up being somewhat rocky. I think sometimes it takes a while for the gluten to work its way out of one's system and for one's gut to function the way it should. I'm still not 100% and I've been gluten-free since the beginning of the year. But I've had some accidental glutenings and recently discovered I wasn't properly following a dietary yeast-free diet.

Anyway, I went to Enterolab because I had a skeptical husband and I did have that rocky sort of start to being gluten-free. I wanted some confirmation that I was doing the right thing, and my dietary response was a bit ambiguous at that point. I'm glad I did because I found a couple intolerances I hadn't even anticipated.

dolly Apprentice
dolly
Posted
  • Author
Before you go in to get your results, you might look at some of the articles on this site about the accuracy of the testing. False positives are rarely a problem. So given your positive response to the diet and positive blood tests, don't let him talk you into eating gluten again so you can have a biopsy.

False negatives are a problem, though. I believe the rate is 29%, but check that (this may be for one particular test, not the entire battery). You can also have symptoms for years while gluten intolerant and while damage is being done BEFORE the antibodies shown up in your blood. So don't let him foist off that "all in your head" idea.

If you have a negative but want a test result for some reason, you can always go with Enterolab. Their testing is supposed to be more sensitive and to show a response before the antibodies have had the time to build up in one's blood. You also don't have to be consuming gluten for accuracy. Your doctor may or may not accept the results, but it doesn't make any difference really. What is important is feeling better.

One benefit to Enterolab is that you can also have testing done for some other intolerances. Many, many folks react to things in addition to gluten. Dairy is a very common problem, as is soy. They don't get completely better until they find and deal with all their intolerances.

To answer your question, I immediately felt better, but not completely better. Actually, the first few weeks ended up being somewhat rocky. I think sometimes it takes a while for the gluten to work its way out of one's system and for one's gut to function the way it should. I'm still not 100% and I've been gluten-free since the beginning of the year. But I've had some accidental glutenings and recently discovered I wasn't properly following a dietary yeast-free diet.

Anyway, I went to Enterolab because I had a skeptical husband and I did have that rocky sort of start to being gluten-free. I wanted some confirmation that I was doing the right thing, and my dietary response was a bit ambiguous at that point. I'm glad I did because I found a couple intolerances I hadn't even anticipated.

Hathor, thanks for taking the time to respond.

I got the blood work done today and now I am absolutely finished wth gluten. I hear you about the biopsy. I refuse to get that done. It is enough for me to know that I can't handle gluten due to my experience of going off of it and doing so well. I don't care about the diagonoses. If I get one that is great. But, it is enough for me to know that gluten makes me ill.

Thanks for everything!!!!!!!!

Centa Newbie
Centa
Posted
You can also have symptoms for years while gluten intolerant and while damage is being done BEFORE the antibodies shown up in your blood. So don't let him foist off that "all in your head" idea.

Absolutely.

... it is enough for me to know that gluten makes me ill.

Absolutely, again. Dolly, I think that journal you're keeping is a great idea.

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