Liz

[Matthew]

Liz
I am glad to hear that you are going to try the Paleao diet even if you have to adapt it as many of us have. I am as enthusiastic as I am in that it legitimizes so much of what I found out about my digestion in the first year working with my MC symptoms by managing my diet. I did not find this site until I was into it for over a year but in that time , with twenty twenty hindsight , I feel that my most important step I made was eliminating all grains. I had become painfully aware in the first few months of being GF that even non gluten grains were contributing to my symptoms and found plenty of evidence on the internet that grains were a contributing factor in many GI symptoms. It still took 8 to 10 months for it to really make much difference but unity, coherence and emphasis paid off. I have read here and elsewhere that many people have had the same experience but it took even longer. Once that grains were out of the way I discovered other things that were a problem but to this day I feel that grains in general were masking the other problems that I never would have dreamed I had

I am well aware that your circumstances are far, far different than mine and what finally worked for me may or may not work for you. I only can hope that something someone says here might lead you into finding what will work for you .

To your continued recovery.

Matthew

[Liz]

Thanks Mathew. I think you can only try things. I f they don't work then, well you try something else but at least you have to give it a go. I will have to do a fair bit of adjusting of the diet but I expect we all have to do that to fit in with our personal situation. Even though we all have a similar problem we are all individuals and react in different ways.

It is lucky that I do have the experience of the people like yourself, Shirley, Karen and Joanna to draw on.


Liz

[moremuscle]

Hi Liz,

I was glad to see Mathew approaching the issue of the grains with you since that has been on my mind ever since I read your last thread in this room. You mentioned your doctor thought white bread was OK for you and it broke my heart to read that because as you are well aware many of us with MC are intolerant of precisely gluten - white bread would have gluten

It seems you have dealt with roaring MC symptoms for a long long time and you are a veteran MCer so to speak; I realize I am a novice and a "punk" next to you and if you don't listen to what I write I understand you very well. It will not break our friendship if you decide to keep eating gluten.

It is always difficult to start a diet like this when you have such a close relationship with your doctor because many times the doctor indicates and prescribes things that contradict the diet and vice versa.

All of the above being said I doubt any adaptation of the Paleo diet that does not exclude as a minimum gluten/dairy is not going to have the desired effect of getting closer to being symptom free.

I hope my post has not discouraged you - I mean to encourage you with all my heart

Love,
Karen

[tex]

Liz,

I, too, don't want to discourage you from trying anything that you think will help you, but I have to agree with Karen. I believe that almost all of us, who are multiply intolerant, and who have had such great success with diet alone, have to avoid ALL sources of gluten, and ALL dairy products, at the very least.

I'd like to point out also, that it took me over a year, before my gut healed enough that I could be sure that I was on the right track, by cutting out gluten. It was difficult to tell if I was making progress, because I kept getting sick from other foods, such as dairy products, corn, fruits and vegges, etc.

I think that in our chat, Monday night, I may possibly have mislead you, when I said that I was not a celiac. I didn't mean to imply that I'm not gluten sensitive, I just meant that I don't meet the classic medical definition of a celiac. In fact, I am highly gluten sensitive, and after I avoided it for over a year, then I was able to locate my other intolerances.

I've been totally avoiding gluten for a little over 3 years now, and a few months ago, when I had a stool sample analyzed at enterolabs, they made the observation, that it was apparent that I was gluten sensitive, based solely on the residial damage to my gut. IOW, 3 years after discontinuing all ingestion of gluten, my gut is still not completely healed, from the damage that the gluten had caused.

Love,
Wayne

[starfire]

Hi Liz,

Don't know that I can add much to what has already been said since I really don't know without a doubt that I have any intolerances at all, and my D is controlled by Asacol at this point.

However, since adopting the Paleo diet, ergo..giving up grain, dairy, sugar & legumes, I have felt a lot better physically. I can't tell that my MC is any worse (since I am on Asacol) even though I have been eating lots more fruit and I eat a lot of "stir fry type" meals with the veggies barely cooked. The last is a choice of mine. I just prefer them that way.

As I said, what I say doesn't carry a lot of weight since I'm still on Asacol, but I do know that I feel better and a little more energetic to boot.

I wish you the best and I surely hope you can work out what's best for you.

Love, Shirley

[Liz]

Hell Karen,Wayne,Shirley

I do intend to give it a go. What I meant was that I would have to work out just what I can have because I react badly to so many of the things that are OK on the paleo diet. I am find that I am becoming sensitive to more and more things each day. What I am doing is sitting down with the list of allowed foods and crossing off the no no's for me. That will give me an idea of how to design my own diet.

I am a bit of a list maker and planner so I don't just jump into things. After all I am a Virgo If I do it this way I reckon it will have a better chance of success because I will be eliminating things that may cause me to go off the wagon,so to speak.

Thank you all for your help and advice. It is comforting to have someone to turn to when you need it.

love

Liz

[Jean]

Liz,

I want to say that I too would like to encourage you to stay away from gluten. I wanted to say something when I saw white bread on your list. You can usually tell in a month if gluten is a problem for you. As to all of the other things on your list, you may be pleasantly surprised to find that you can eat them again. Especially fruits and veggies. What went right through me when my MC was bad is completely tolerable now. It took going gluten free (later dairy, soy, corn and rice) to give me back many foods.

Hope that encourages you. We'll always love you, no matter what you choose to eat, so don't do anything you don't want.

Love, Jean

PS My kids say that I attribute EVERYTHING to gluten intolerance!

[Liz]

Hi Jean

I used to always have grain or wholemeal bread, that is why the doc suggested white. Excess fibre seems to be the main problem. I will go down the gluten free road again to see what happens. My daughter is also urging me to. She is celiac, only recently diagnosed and is sure that it is genetic. As I said you can only give things a try. My husband is going to go along with me but not until we come back from our short holiday week after next.

Love

Liz

[tex]

Hi Liz,

Enterolab, and a few other labs, I believe, offer DNA tests to determine if you have the genes that predispose you to celiac disease, and/or non-celiac, gluten sensitivity. It requires simply rubbing a cotton swab on the inside of your cheeks, and sending the swabs to their lab, in Dallas, Texas, USA.

I found out that I have both genes.

Love,
Wayne

[Matthew]

Liz
If your daughter has celiac disease genetically speaking it would mean that she inherited it from you, your husband or a combination of the two of you. Even one of the genes can make you highly reactive to gluten. Since she must have the gene or genes for Celiac disease it is a good chance that she might have gotten them from you . IMHO it would be a good idea to get the genetic testing done. Then you would really know what the next step would be.

Matthew

[Polly]

Hi Liz,

Just wanted to say how much I admire your determination to give it a try (no gluten) and to cheer you on, too.

I have found that I feel best if I eat no grains at all. And it took me 8 and 1/2 months for the D to stop once I went GF. Hang in there, you can do it!!!

Love,

Polly

[Liz]

Thanks People

There is a lab in Melbourne that Susie sent her specimens to, Probably the same as in Dallas, Wayne. I did try the GF years ago but it did not seem to make any differenvce. Maybe I did not give it long enough. Susie wants me to see her dietition and I think it may be a good idea.

Love to all

Liz