Hi Guys,
Hope you are all doing well? As for me, still on a roller coaster but not as bad as it was although pain still a big problem! However, I have had some time to research and think and consider and I am increasingly coming round to the idea of going GF! However, I want my Consultant on side so I am trying out things while "finishing off" the stores I have in - the reason being if, when I see him on 16 July, he wants to do tests which require me having gluten in my system, then there still will be! That probably sounds odd but I also need to plan food, find out where to get stuff etc and (as I am sure you probably all have experienced!) it is daunting! My biggest fear ironically is going to be eating when I visit my parents - part of the reason why I need to be able to educate Mum in what I can eat and can't - she is 79! She is also the generation who say "that wasn't invented in my day!" meaning people didn't get ill like this etc. However, that said she knows I haven't been well and has been really quite supportive. But if I say I am going GF she will view it as a fad and not take it seriously - the "a little will do you no harm" attitude. But if I report that my Consultant thinks I should go GF ... LOL! Don't get me wrong - I love her to bits but she is controlling and even though I am 50 now she still can control!!
Anyway, D-Day - or GF day starts fully on 22 July! The reasons are complicated and involve really good friends, one of whom stayed all night in A&E with me! - and her husband is a chef and is planning a very special dinner on 21 July with a friend who is leaving and moving to Thailand! I haven't the heart to spoil the sumptuous menu planned.
But since discovering this site, forum and wonderful people and being able to read, research and take heart from all of you I am ready to commit to this!
So my questions - well one really - have any of you done a gradual ease into GF? If so what sort of meals did you have and did you notice any benefits while in the switch over stage or did you have to wait until you went totally GF? (OK so that was 4 questions!
Congratulations on making that decision!! You will be so glad you did!!
I did not transition slowly, so I cannot answer your question. I was convinced that the only way I was going to feel better was to go GF, and I wanted to feel better ASAP. But I know there are a lot of people who have done a gradual transition, and someone will be able to answer you from their experience.
However--to answer your last question, I doubt there are any benefits until going completely GF and being there for some time (different for everybody) because even a little gluten will keep the antibodies roiled up.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
I'm glad you made the decision to go GF - I've been GF since November and while I wasn't sure it was working for the first couple of months, I'm so thankful now that I stuck with it anyway.
I don't know anyone who went GF gradually, though with as many members as we have here, I'm sure there are some who have. I did gradually phase out other items, though - GF in November, DF (except for a few things I didn't know had dairy) in December, soy and eggs in February. Gluten is such a nasty one, though, that you're better off just dumping it altogether if you can (you'll probably still be doing it more gradually than you think since we tend to keep discovering new places where it's hiding). The trouble with gluten is that our bodies keep making antibodies against it for a LONG time after we go off it. Some people see a difference right away when they go GF, but for many of us, the process is more gradual. I had been off it for 4-5 months before I saw any difference at all. Now at almost 7 months I can tell I am healing, and I can also tell when I get something that does have gluten in it (the results are pretty dramatic - I go from soft-serve or pencil poop to WD within about 12 hours). It would seem from the evidence I'm collecting both here and from other sources that full healing from gluten damage takes anywhere from 1-2 years.
With that said, the 1-2 years is going to go by, whether you go GF or not - you can be another year worse, or you can be on the road to healing. Choosing to go GF is the first step in taking charge of your own healing. Congratulations and best wishes! :)
No, not gradually. Got my LC diagnosis on a Friday afternoon, found the PP soon after, and by Monday, I was GF. (I did not ask my doctor's permission. I trusted the people here who were in the same boat and weren't trying to sell me a thing.)
DISCLAIMER: I am not a doctor and don't play one on TV.
I was so sick and miserable that, once I found this forum and read the posts, I went gluten free from one day to the next. Or thought I did. It took me about 3 weeks to go on a rampage through my kitchen and purge it of all the products I had that contained any trace of gluten. Then I went on a chicken soup and rice diet, while waiting for my enterolab results. When they came back I discovered I am sensitive to both chicken and rice, so it was time for a rethink, and a new purge. All the chicken stock I had carefully made, all the beautiful chicken I had stockpiled, and the lovely rice went to neighbors. A year later my friends still have some of the products I made.
I also found I am sensitive to corn, rice, almonds, dairy, eggs, soy and then discovered I can't tolerate any poultry, so all that went too.
Then I discovered that my kitchen equipment might be harboring gluten so I got rid of a lot of that too. It was a VERY expensive period.
A year later I am still struggling, but I am definitely not nearly as sick as I was then. I am absorbing nutrients, as evidenced by a horrible weight gain, which I am fighting now. All the weight I lost is back, and I don't need it.
Still, I would not go back to a year ago for anything in the world, because even though I am still not well, I am definitely better than I was, so healing IS taking place.
I have never regretted going gluten free. Until I discovered I am sensitive to just about everything else I didn't find that hard. There is plenty to eat without gluten. It really isn't the hard part, or at least that's IMO!
And the support you get here is worth it's weight in gold!
I also did not go gf gradually. In fact my approach was exactly the opposite, take out everything that might be causing a problem all at once, so I went gf/df/sf/ef immediately. Then when I had the enterolab tests done and found that I was intolerant to all 4 it was no biggy, just confirmation of what I already suspected. Since then, with the help of the enterolab tests, I have eliminated more foods. Although I am not 100% well I am so much better than before.
There may be psychological and/or practical reasons for your going gf gradually, but in terms of physical effects, from everything I have learned here and elsewhere, you will not be helping yourself until you eliminate gluten entirely. I actually didn't find it daunting at all, but I stick mostly to fresh meats (no additives, nothing injected) and produce.
Good luck with this. I hope you can find a way to prioritize your own health rather than the needs of others in your life, including your doctor. It seems you are moving in that direction.
I'm still trying to eat gluten/soy free and I've been at this for two years. It's not easy and I screw up all the time. How gradual is that?! I suspect I'll never be perfect at it but I have made great strides. I can testify that my cupboards only contain safe food items. I make a concoction in my crock pot every weekend: chicken, pork, or beef, carrots, squash, & potatoes. I freeze this 'glop' in containers and it becomes my work lunch for the week. One would think I'd be sick of it but no, not really. Your target date of July 22nd will give you time to gather more knowledge and food supplies. Good luck to you!
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
[The trouble with gluten is that our bodies keep making antibodies against it for a LONG time after we go off it. Some people see a difference right away when they go GF, but for many of us, the process is more gradual.
Deanna[/quote]
If I understand you right does that mean that if I were to go GF today - given that I don't see my Consultant until 16 July - there would still be sufficient gluten in my system if he wanted to test?
Anne wrote:If I understand you right does that mean that if I were to go GF today - given that I don't see my Consultant until 16 July - there would still be sufficient gluten in my system if he wanted to test?
Maybe, but I wouldn't count on it, because the classic celiac blood tests have very poor sensitivity. The symptoms have to be just about maxed out and the damage to the small intestine has to be major, before the blood tests will show a positive result. Roughly 4 to 8 weeks after beginning the GF diet (depending on how high the antibody levels were to begin with), blood levels of anti-gliadin antibodies for most celiacs will have declined sufficiently that the blood tests will not show a consistently reliable result. False negative test results are very common. False positive results are very rare.
By comparison, the stool tests offered by EnteroLab are so sensitive that they can still reliably detect anti-gliadin antibodies for at least a year after the GF diet was adopted. If the antibody levels are high to begin with, the EnteroLab tests can still detect anti-gliadin antibodies in stool samples up to two years after the GF diet was adopted.
IMO, the celiac blood tests are so insensitive as to be virtually worthless. They will only detect fully-developed celiac disease. That means that most patients have to be sick for many years before they can get an official diagnosis. The average length of time between the onset of symptoms and a positive celiac diagnosis is over 9 years in the U. S. I doubt that the diagnostic time is much shorter in most of Europe.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
I don't have ready access to Enterolab and (seriously) how would I send a sample via mail when sending stuff to my niece and nephew from Northern Ireland to Connecticut and New York takes at least a week (pooh!!!). I am taking the article "Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone" plus a couple of UK BMJ articles which endorse the gluten sensitivity - I am still looking to see if anyone here has done what Dr Fine has done ref the stool tests - definitely my preferred option.
Someone commented on my hesitancy to adopt a GF and DF etc diet - I guess I am still strongly influenced by my upbringing which was eat it - if you vomit then you don't have to eat it! My first presentation was probably when I was 10! Put down to nerves because I was doing entrance exams to a private school! (Successful!) But I have eaten gluten in its various forms plus dairy all my life!
I had a significant conversation with my Mum today. She suggested that the diet (as in weight loss) is why I am not well. I pointed out that I have been eating really healthily for the last 8 months, have lost 34lbs (2.5 stone) and yet this has happened. I have averaged 0.5lb a week weight loss! But I did introduce porridge (oatmeal) since December??? I don't generally do breakfast! She is convinced I have cancer! But I know I haven't because being on Asacol I have blood tests every three months and that would be picked up!
I am an intelligent, educated person. But I do need reinforcement from the medical professionals to validate me! That is just who I am! I want to get well - and after the last 8 years, another month is fairly insignificant. So please don't condemn me for being hesitant because changing my diet will affect all my friends, my social life, my family, everything. It is a big step and yes I am so tired of illness but it is also extremely daunting to take it from where I am now.
Anne
Anne, I certainly understand where you're coming from in coming to terms with gluten. I, along with many here were overwhelmed with the ramifications of giving it up. A big part of my family life revolved around food. I remember posting on here that it was almost similar to going through a grieving process with a death (denial, anger, bargaining, depression, acceptance). Unfortunately, many of us couldn't find the validation we needed from the medical professions and sought other sources. That's how I found this board. My primary doctors are the Mayo Clinic and even they don't "get" a lot of the issues of this disease. All you can do is try things one step at a time. If something you do makes you feel better you will want to continue doing it. Deb
Actually, you do have access to Enterolab. We have members from as far away as Spain and Hong Kong who have successfully sent samples to that lab. When you order a test kit, it will come with shipping instructions. You freeze the sealed package that contains your sample and then send it to the lab by overnight delivery, using FedEx or UPS. There are other labs that offer stool tests, but experience shows that no other lab in the world can provide reliable test results. Those other labs are a waste of money.
I ate gluten for over 50 years also, but I finally got so sick that I didn't have any choice but to give it up. I couldn't work with nausea and D all day and into the night. When I first went to my doctor with my symptoms, I didn't know what was wrong with me, (and neither did he). He diagnosed me with colon cancer and sent me to a GI specialist who agreed with the cancer diagnosis, and then he scheduled me for every test he could think of. None of the tests found any cancer, though, so he declared that there was nothing wrong with me, and sent me home, (still sick as a dog). That's when I realized that if I were ever going to get my life back, I would have to take charge of my own health, and so I did.
Good luck trying to find a doctor who understands this disease, because I couldn't find one.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well one of my concerns was my Mother and she has totally blown me away today. Apparently my parents have one friend who is Caeliac and another who is gluten intolerant and had very similar symptoms to me. Mum and Dad are going to a meeting tomorrow and are going to have a chat with their friends to find out more! Mum said I absolutely have to talk to the consultant about this and she said if you need to do this to get well then do it! You could have knocked me over with a feather - I was amazed! This was over lunch during which I had to visit the loo 4 times, such is my day today - very explosive!! I have an appointment with my GP tomorrow and am going to discuss this with her as well. But for the first time I am beginning to view this change in diet as a positive rather than a negative! The one question that still remains and I am confused about is if I go GF now will it impact on any tests I may need in 3 weeks time or so? Some people imply that gluten remains in your system a long time which suggests I could start this now - but others have suggested that they had to carry on eating it until they had had tests! Any pointers? And thanks everyone - I am probably a pain in the proverbial but I guess you have all gone through this!
Anne
Sorry Tex - I just read your earlier post which answered this so I guess I do need to keep going until I see the consultant! Depending on the outcome (which I hope will be supportive as one of the first questions he asked me when I first went to him was "had I been tested for Caeliac?"!) If he doesn't agree, then I will tell him that I intend to get tested through Enterolab!
Anne, keep in mind that many (if not most) of us here tested negatively for celiac. As Tex has mentioned, the damage usually has gotten very extensive before the standard testing (hopefully) picks it up. For me it was pretty easy to test myself. I quit all gluten for a month, then ate a big bowl of Japanese soba noodles. I got violently ill. This was while I was awaiting my Enterolab results. I haven't purposely eaten gluten since. Deb
My biggest fear ironically is going to be eating when I visit my parents - part of the reason why I need to be able to educate Mum in what I can eat and can't - she is 79! She is also the generation who say "that wasn't invented in my day!" meaning people didn't get ill like this etc. However, that said she knows I haven't been well and has been really quite supportive. But if I say I am going GF she will view it as a fad and not take it seriously - the "a little will do you no harm" attitude. But if I report that my Consultant thinks I should go GF ... 
LOL! Don't get me wrong - I love her to bits but she is controlling and even though I am 50 now she still can control!!
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