Crazy update. And good news (gluten related).

Well... I'm almost ashamed to post it, but here it goes.
I've been reading about people sharing that avoiding gluten somewhat helps them, not every one, but a good number. And I usually think "ok, it works for them, but bread is so basic that it cannot be".

Then, after taking Humira and having some good bloodwork results (but still with some D and some cholesteramine to control it, and occasional symptoms) my doc said "let's stop all meds and see what comes up". I have to confess that I was very afraid. Real fear.

But... Now I have YOU. And, besides my doc never mentioned gluten, you did. And I thought it was time to give it a try, considering I was going med free, and still had some symptoms (light ones, I must admit).

And I went gluten lite (still NOT gluten free). No more bread or pasta or etc. And, for the first time in 18 years, I'm med free AND D free in the same time. Note that after 4 months in Humira, I improved, but was not D free. Maybe a day, here and there. Now I have a D day, here and there, usually when I slip in a party or meeting.

It has been two months and a half after the last Humira shot, and ten days ago I had D and small pain, after a pizza party ( a last test!). After that, I ate cheese with no issues, so there is seemingly no lactose fault (in my case).

Ok. One's has to know what work fou you, and I didn't want to believe that I was in the gluten side of that war... But I surrendered, and now I'm learning to live gluten free and D free.

(after 3 surgeries, I'm not naive... I really surprised)

Daniel

I actually find going gluten light helpful too. It's hard to say for sure though. I've had biopsies and I don't have celiac, but I think for *some* ppl with CD overkill of wheat does bother them. Everything in moderation.

That's the spirit.
I felt I had to make some tests before announcing this radical change in my diet. It was interesting starting to feel better but still not sure about the merit.

Now I'm announcing the gluten free with more assurance, but still hoping that this healing status lasts.

Daniel

Congratulations to you!

Have you experimented to see if the problem is definitely gluten, or if it's wheat?

Yes, it seems that I can do gluten and not wheat. At least, I can do oats without many problems. One of these days I'll do another experiment to see if I'm better without gluten entirely.

But wheat sensitivity is pretty well known. If you look at survival literature, for instance, you'll see warnings about relying too much on wheat products, as many people can have a sensitivity to wheat without really being aware of it, until they start eating more of it than usual.

I think, myself, that might be half our problem. When we're sick, we're thrown onto more refined products than usual, and that can mean more wheat etc... and, bingo! more problems.

Just a little theory sparked in a half-asleep brain - don't fuss too much if it doesn't make much sense .

Ivy.

Oh, yes. And it's amazing how we can keep on doing the same thing without realising it's doing us harm, especially if medical professionals have told us to follow that particular diet.

It was my mother who noticed I couldn't cope with dairy anymore: me, I was just carrying on with my normal diet, oblivious, because d was normal for me, and I wasn't noticing the pattern.

Djin, I'm on fodmaps too, just like Kiwi. That's one reason I asked if you're sensitive to wheat or gluten... because if you're sensitive to wheat and not things like oats, then it's possible that things like onions and fructose are affecting you too, and you could benefit from being on fodmaps like the two of us.

Ivy (still half asleep)

Interesting, Kaz!

Well, no, I don't necessarily recommend the diet, but I do recommend experimenting with other food groups to see if your problem is wheat-specific, or gluten-specific, or grain-specific, or has something to do with sugars (fructose etc), which *might* mean that fodmaps may help you.

Sometimes it's easy to fall for the first solution we find, without noticing the bigger pattern that hides behind it.

Me, I went for more than a decade thinking that milk was my only problem, only to find that my problem was larger.

Ivy.

For me, it wasn't the wheat in the bread, but the yeast. If I eat anything with yeast, or a hidden form thereof, I get cramps and D. It is hidden in a lot of food products so I have to read all labels carefully.

I can't stop find it amusing, in a weird way. I had ham sandwich, felt bad and put the fault in the ham. The same with cheese, butter, egg, whatever. Never tried to blame the bread. Just followed this standard like a little lamb.

It was every food's falt, but not the bread's that was ingested with it. Now, when I think about it, I feel somewhat stupid for not been able to see the pattern.

Just for information, I'm not symptom free, considering the three surgeries and the small passage in the attachment site (terminal ileum, as most). To same my ileo cecal valve, they had to use a very narrow part of my ileum. So, I still have some pain (!!!) here and there. But that's the subject for another thread.