Gf For 3 Wks, Endoscopy On Wed.
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Posted 01 August 2004 - 09:22 PM
Will I test negative? My GI hasn't told me to start eating Gluten--this test was scheduled last month, and I really want Celiac's to be the answer to what I'm going through--I have Gliadin antibodies!!!
Thanks for listening,
Posted 02 August 2004 - 07:44 AM
Posted 02 August 2004 - 01:58 PM
I concur.........you're lucky not to have been gluten-free for a longer period of time. Lyndsey (on the board) was gluten-free for......something like 3 months before finding out she needed a biopsy. If you continue eating gluten-free, you might test negative for celiac disease, even if you really have it. Three weeks isn't long enough for your gluten levels to go down a lot, but every week gluten-free makes a difference, so start eating gluten to be safe.
I would start eationg mucho gluten now just to make sure
I doubt that they will have healed THAT much in three weeks.....they will have started to heal, but not a lot.
your intestines will have probably healed a lot.
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Posted 02 August 2004 - 07:43 PM
I see what you mean ...I was thinking that I couldn't erase five months of damage in three weeks...or is that possible?
What really boggles my mind is why my doctor wouldn't tell me...he says that I don't need to eat any Gluten...it isn't a matter of who's right/wrong, but more along the lines of exactly how sick I want to make myself in the next 48 hours and yet still make the results count. I need some finality in my life.
Posted 02 August 2004 - 08:31 PM
If your results are negative, please do not rule out Celiac.
I can't really tell you what is going on in your intestines, but I can tell you what I've read, and my own personal experience.
First I've read that the lining of the intestines starts to heal after three days. This does not mean that it will heal "completely" in that short of time, or that symtoms will go away after three days.
I've also read that it takes anywhere from 3 weeks to 5 years (extreme ends of the spectrum obviously) to eat enough gluten after being gluten free, for the damage to be consistent with Celiac. Obviously this shows that everyone is different. You may have a lot of damage and it may still show after three weeks, or you may have had minor damage in the first place and it could have healed to the point of not being recognisable as "damage consistent with Celiac Disease". The severity of symptoms is not based on the amount of damage in the intestines. Some people have little damage, and horrible symptoms, and others have severe damage and NO symptoms!
Now, my personal experience is this:
I had been on an extremely low carb diet for two months (in early 2001) and had not eaten hardly any bread products (but had probably consumed gluten in some form). I had lost weight, but felt very sick most of the time. So that diet ended. Felt better for a time, then very sick after consuming a normal gluten filled diet. Just kept getting sicker.
Went from doctor to doctor (as I had for most of my life) and everyone kept saying it was IBS.
In late 2001, I started the Eat Right 4 Your Type blood type diet and since I am blood type A, it was a wheat free/dairy free diet. In a few days after following the diet meticulously, I felt great. Better than I had in all of my life! For the first two weeks I was (unintentionally) gluten free. I had never heard of gluten before, so this meant nothing to me then. I then got myself some spelt flour (NOT gluten-free!) and made some bread. This was an exceptable alternative on the diet, but the way I felt after eating the bread was unbearable! I wanted to die, I was in so much pain. I thought I had done something wrong when I made the bread, so I started researching wheat-free bread making and came across some cookbooks by Bette Hagman. In reading the introduction she was talking about Celiac disease, and in reading of her symptoms I got chills. Many of her symptoms were like my IBS symptoms that I had had for 29 years! So I started researching Celiac/gluten intolerance. I started seeking a diagnosis. I went back on gluten, since that was what was recommmended in the articles I was reading. After a year, and many tests for everything BUT Celiac Disease, which even included an endoscopic exam (he never took a single biopsy) I gave up on the doctors and went gluten free again.
After a few days I had relief of symptoms, but after a few weeks I felt I really did have this and if I wanted my children tested, then I would have to have a diagnosis. I went back on gluten again and after a few months back on gluten I went to a new doctor. I had managed to have my Primary Care Physician order the blood tests, but they came back negative. So the new doctor had the negative tests in hand when I got there and she refused to test me for Celiac unless I was anemic. I was borderline, as I had been most of my life, but she still refused to test me. I wanted an endoscopy with biopsies. She wanted to treat me for IBS and recommended a high fiber diet (consuming wheat bran daily!). I got mad and ordered the Enterolab tests. I had been getting the run-around for two years and needed answers.
I got my results from Enterolab and went gluten and dairy free that day (Nov. 10th, 2003) Two weeks later I went back to the doctor with my results and she refused to accept them, but agreed to do the exam! Well I had only been gluten-free for two weeks that time, so I went back on gluten for two months. I seriously overloaded on gluten, eating more in a day that I normally would have in a week! Two months later I had the biopsy and it was negative. Now I knew gluten was my problem and I was so sick those two months, and I even started to get the DH rash that is caused from Celiac Disease. I was so happy to get off gluten again. But still that doctor refuses to see that I have the disease.
So from my experience, three weeks off gluten might be enough to heal your intestines enough to mess up the results, even if you do go back on gluten before the test. Two days is not going to be long enough to show damage. It is hard to say how much damage I had before going gluten-free, but during the first endoscopy (without biopsy) in 2002 the pictures did show inflamation at the first part of my intestine and further down it was very slick. I was asked afterwards if I used a lot of laxatives! I was going to the doctor for chronic diarrhea and stomach pain, and they thought I was using laxatives!! I still don't know what it would have shown then if they had taken biopsies then, I had just assumed they would and I was very angry when I found out afterwards that they didn't. Maybe it would have showed damage then.
I can't tell you not to have the biopsy done while being gluten-free, but in my opinion it is pointless to do it. It just sets you up for the very high chance of having a false negative.
Mariann, gluten intolerant and mother of 3 gluten intolerant children
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