|
|
...if it's not helping you? You're probably cutting out alot of foods that can be very helpful with IBS! I did an exclusion diet to check for gluten intolerance and all it did was make me very bored with the complex diet and more gassy b/c I was struggling to eat enough SF! So I don't eat GF and do alot better.
I agree with what Mike said...there are others things possible, but if you've had the biopsies done (I have) and they were all negative, then why put yoursef through the difficulties of GF?  Sorry I just don't get that reasoning at all.
Print
Remind Me
Notify Moderator
|
|
|
Celiac is an IBD where gluten triggers inflammation, gluten intolerance can be just a food intolerance.
The best way to check for gluten intolerance when you've all the tests for celiac (and the microscopic thingy Mike mentioned) is to do an exclusion diet. Cut it out COMPLETELY (that is very important) for at least a month, monitor your symptoms and then eat it again and monitor your symptoms. If you ARE gluten intolerant, cutting it out will make you feel better (even if it's just persistent bloating or headaches that goes away, not all your symptoms) and if you're not it won't help your symptoms. Remember that you have to keep everything else that affects your IBS the same as much as possible to not complicate the results. An exclusion diet is pretty foolproof and any alternative doctor worth his fees will always do one as well as a skin/blood test for intolerances as the tests aren't always reliable.
Do NOT eat GF if you don't need to. If you DO need to, then that's cool and it's definitely possible but it does make your life harder and more expensive, as well as cutting out alot of foods that are very helpful in controlling IBS.
Print
Remind Me
Notify Moderator
|
|
|
Print
Remind Me
Notify Moderator
|
|
|
Unfortunatly there isn't any "real" known treatment yet they don't even really know what causes it yet. For me the majority of the symptoms were cleared up by eating gluten free, but for others diet alone doesn't seem to help. There are a couple of medications, but I found one didn't work for me and has actually made some sicker and the other I haven't tried since I read the symptoms and they sound worse than what I have already.
Since it is rare and relatively new not a lot of research has been done. There was a post that I wrote on Lymphocytic/Microscopic Colitis that has a link to a site that has some more people who know more or who have been dealing with this disease a lot longer than myself.
In fact according to the statistics it's normally associated with 50+ year old women, I'm a 36 year old male. So I'm guessing there a lot more out there who don't know anything about this as well.
Print
Remind Me
Notify Moderator
|
|
|
You're very welcome. I'm learning something new every day about it. And at times I feel I know more about it than the Drs do, and unfortunatly it seems to be that way. My regular Dr hasn't even heard of it. 
I hope that this info helps someone else out there who may be suffering from this disease.
Thanks,
Mike
Print
Remind Me
Notify Moderator
|
I eat GF...
#166689 - 04/03/05 08:01 PM
|
|
|
|
|
Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
|
|
|
...because I tested highly positive for gluten antibodies on the blood tests twice. So obviously the blood work is telling me my body doesn't like gluten.
Gluten intolerance is not black and white. Even if the biopsy comes back negative, I was told that that isn't a green light to go and eat gluten. I'm afraid I may be doing harm to my body in the long run, if I eat gluten now.
Also, in addition to the gluten intolerance test being positive, I do have IBS. So I am figuring that my current problems are due to my IBS, as are Mary's and Ruchie's.
I honestly hate having to eat gluten free, and often wonder why I go through the expense, restrictions, and difficulties of trying to maintain both a GF and IBS diet. It is extremely difficult and usually makes social events impossible. And I still have major pain, cramps, gas, bloat, constipation while going through all the difficulties. It doesn't seem fair. I often, often feel like giving up and eating gluten again. But I have talked this over with people whom I trust, admire and respect and the advice given to me is to stay GF. So, for now, that's what I will do.
Who knows, one day I may say the heck with it, I'm not feeling better, so gluten must not be the problem. I would be interested in what others who are GF on this board think about all this. Any comments would be welcomed and appreciated!
That's were I'm at now Linz. I'm really up in the air, but at as of today, I'm still in the mind set that I need to be GF probably forever. If I'm wrong, it will be a lot of extra stress, restrictions, and cost for nothing though. UGH! 
--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
Print
Remind Me
Notify Moderator
|
|
|
Could you all give me your opinions on whether you think I should remain eating GF since I am still struggling with all these horrid symptoms. My story is in the post above this one. How I had the blood work come back highly postive on two of the test IGG and IGA, that I had done twice. But I had a negative biopsy and negative scores on the one blood test that is most specific for celiac disease.
But my symptoms have not improved since being on this GF diet for almost 1 1/2 years now. Except now I have chronic C instead of chronic D.
Linz asked why I continue to eat GF if I don't feel better. Which is something I ask myself. What do you guys think?
Do you guys feel better eating GF or do you still have pain, cramps, gas, constipation, bloat. I know Mary must eat GF because she is definately celiac. But do you guys I need to? I am in a quandry.
The expense, restrictions, stress, and inconvience of eating GF is so life altering, so why do I do it if it doesn't seem to be making me feel any better?? I would love to be able to eat gluten again if it were safe and if it didn't make me feel worse. But the postive antibodies are telling me something, are'nt they???
You can read more in my post to Linz below on why I still eat GF. Any advice would be greatly appreciated.
--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
Print
Remind Me
Notify Moderator
|
|
|
Beth, I think the concensus here is that if you've tested positive for gluten antibodies, you have celiac disease. You don't need flattened villi to prove this, as often the flattened villi are a sign of disease progression. So my advice is if you have celiac disease you MUST be GF for life.
Now onto the difficult one. Going GF for 1 1/2 years hasn't brought you any relief. Are you ABSOLUTELY STRICTLY 100% GF and DF? If so, there are other food intolerances and allergens that could be causing your symtoms. Have you thought about fructose malabsorption? Its produces all those symptoms you listed. And there's yeast intolerance. And how about a soy or nut allergy? They can all cause GI symptoms, and only the smallest amounts can keep you with gripping painful symptoms, despite being vigilent with your GF.
Perhaps you should try going fructose free for 2 weeks and see whether this provides any respite. I can send you some info if you like.
I can sympathise soooooooooo much with you Beth. I desperately want to know whats causing my symptoms too, and nothing I do seems to provide me with any respite at the moment. But can I please ask that you don't start eating gluten again, your test results show that you have celiac. Keep up with the GF and see if you can find the other food intolerances that are keeping your symptoms so severe.
I remember back to the days when I was 90 % better in health. It was only because I was GF, DF, yeast free, sugar free, preservative free, IBS safe and I had all my supplements worked out perfectly. It was a miserably boring life, but what I wouldn't give to be back there again. It's make me cry to realise I truly didn't know what I had till it was gone. And now I can't seem to get it back, despite being on the same diet.
So keep up the GF, and try cutting out fructose, thats my thoughts. I'm going GF, DF, soy & nut free (possible allergens for me I've found out) and yeast free at the moment. One day at a time. If all this combination doesn't make me better I'm going to try going fructose free as well. Its a bugger of a life, but I need to do it to find my answers.
Take care sweety. Chin up and keep up your journey. The day you give up is the day you'll never ever get better.
--------------------
~ Live life, don't let life live you ~
Print
Remind Me
Notify Moderator
|
|
|
Beth--stress can DEF cause these probs along with
IBS. Did ANYTHING in your life get better going GF? Are you sure you were 100% GF (I mean evn applesauce has to be GF)
I'll write more soon...feeling pretty down right now, sorry *hugs*
--------------------
Formerly known as Ruchie
Print
Remind Me
Notify Moderator
|
Chrissy
#166714 - 04/03/05 09:30 PM
|
|
|
|
|
Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
|
|
|
A quick response tonight and more tomorrow, as it is late and I need to get to bed. 
Thanks you for taking the time to read my post. I did some editting to it probably after you posted. I do not think I have celiac disease. I had a blood test done to test for the celiac gene, and it came back negative. Also, the third blood test (ttg or em...someting) came back negative twice and that is the test most specific for celiac. So, I am pretty sure I am not celiac. Thus, my quandry. Am I really gluten intolerant, or did I have some false postitives. I don't know if you read my first post about what my first GI said, and the "specialist" but they both said I should eat gluten and not worry about it. My current doc is the one who feels that I am Latent Celiac and suggested the GF diet. He also believes the gene test is not fully reliable.
I just feel so ripped off because you know how difficult all these diets are, and if I truly don't have any relief, then why do I bother? I do believe I am STRICTLY GF and I know I am strictly DF. The relief I have had is going from D like 7 times a day to chronic C, if you can call that relief! But at least I am able to work now.
I don't do soy, except for some Braggs GF soy sauce now and then. I have considered fructose intolerance, but my state has no facility that tests for this. I never tried yeast free, but I usually only eat 1/2 piece of bread a day anyhow.
Are you fructose free now? I do eat fruit 2 times a day. I do love my fruit. And I have some carrots everyday too. Yes, I would like some info if you have it! I don't know how I can give up more food though. This is too much for me, Chrissy. There seems to be nothing left to eat. And I relied on the fruit for help with fiber since I cannot tolerate SFS and if I give my yeast up, there goes any gram of fiber! 
Okay, enough for now. Maybe I will email you. Thanks again for all your support, Chrissy. You are a true friend. I liked the last line of your post. Thank you for that. Oh, it is such a gift not to be in this all alone. Knowing that others are giving all this up in order to find relief makes it a tad easier to watch everyone in my life much down on pizza, ice cream, chocolate candy bars...oh, the list goes on!
--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
Print
Remind Me
Notify Moderator
|
|
Posts
