Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Gf For 3 Wks, Endoscopy On Wed.
0

5 posts in this topic

I've been Gluten free for three weeks, and I learned that patients must ingest Gluten before an endoscopy.

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,

0

Share this post


Link to post
Share on other sites


Ads by Google:

I would start eationg mucho gluten now just to make sure, your intestines will have probably healed a lot.

0

Share this post


Link to post
Share on other sites
I would start eationg mucho gluten now just to make sure

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.

your intestines will have probably healed a lot.

I doubt that they will have healed THAT much in three weeks.....they will have started to heal, but not a lot.

-celiac3270

0

Share this post


Link to post
Share on other sites

Molly & celiac3270:

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.

HELP!!!!

0

Share this post


Link to post
Share on other sites

Hi Jill,

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!! :angry: 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. :(

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,375
    • Total Posts
      920,572
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,451
    • Most Online
      1,763

    Newest Member
    Chelsealarita
    Joined