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gluten-free Not Working?

donnal

By donnal
in Coping with Celiac Disease

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donnal Apprentice
donnal
Posted

I've been, as far as I know, gluten-free for 2 1/2 wks--not very long--and I've had some good days but also some days like before. I've been labeled, of course, IBS but with constipation. Blood-tested negative for celiac (I know from this site that isn't reliable all the time). I'm 55 and have had gut problems most of my life. From a stressful time several years ago it seems to have gotten worse---very early satiety, upper abd pain and bloating, tenderness at times, etc. OK. Well, since being gluten-free there have been some returns of that so, my question is, how do I know that it's cc gluten (a possiblitiy since I'm an empty-nester and it's hubby and me and he's not gluten-free!) rather than that gluten isn't my problem and quit the lifestyle? Do I just need to stay the course a bit longer and try to be circumspect about cc? It's not an easy way to eat, as you all know, so it would be easier, cooking-wise, to not be gluten-free but the abd problem "ain't so fun" either!! I'm willing to learn a new way to eat if it would relieve my misery!! Thanks for any help.

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spunky Contributor
spunky
Posted

It's hard to know, especially at only 2 1/2 weeks gluten free.

In my own experience, I saw CHANGES (not sure I'd call them improvement, but changes from my ordinary pattern of symptoms I'd had for years up to that time) in my symptoms after the first two weeks of 100% gluten free.

Back in 2000, I went what I thought was gluten free and saw no difference and then just added the gluten back... but I was doing stuff I didn't know was wrong at the time, like going ahead with soy sauce that has wheat, figuring that small amoutn wouldn't hurt, and I was having a pizza delivered once a month or so, just as a relief from all the gluten free attempts. So... I learned from that that, unfortunately, gluten free has to be 100%.

But then as I said, in 2006, when I tried gluten free 100%, I saw only changes, disruption in my pattern of usual symptoms by 2 weeks. By the end of 3 months, I was gassier than ever, and had an entirely new, different set of symptoms, but the worst of my major symptoms before was gradually seeming to become less and less, although still there on and off.

You might want to look for just changes or disruption in how your symptoms happen at this point. If nothing whatsoever is changing all, then maybe you should try to see if something else could be causing the symptoms. If there are at least some notable changes, then it might be a good idea to try to persevere a while longer.

Ursa Major Collaborator
Ursa Major
Posted

Most people need to eliminate dairy as well for at least the first few months in order to heal. And many here can't tolerate soy, either.

Corn and eggs are other likely culprits. So, what I am saying is, that other intolerances could be hindering your progress on the gluten-free diet.

Lisa16 Collaborator
Lisa16
Posted

Hi Donnal!

I have a couple of thoughts--

Why did you decide to try going gluten-free? As an elimination experiment to see if that was your problem? If that is the case, there are four big food allergy items, and after that there is a list of about ten common secondary ones to try. It does sounds like a food allergy to me.

The big four are wheat (gluten), corn, soy and dairy (casein).

I would try eliminating one at a time, and then systematically eliminating the next one. So you are off to a good start. I would try dairy next, as Ursa suggests, and after that the soy and save the corn for last.

Once you eliminate the culprit(s), it might still take a few weeks for you to notice-- everybody is different. In my case I felt better almost immediately and was "normal" in about 6 days after being sick for over 20 years. It was like a miracle.

Antoher thing you might try is to do the labwork to see what it is. there is a company called entrolab that people on the forum like quite a bit and they can test you for the dairy, as well as the gluten.

Ursa Major Collaborator
Ursa Major
Posted

I think a better suggestion would be to do a true elimination diet. Meaning cutting out all the most likely culprits at the same time, and then, after at least a week, trying them one at a time, a few days apart.

Because otherwise, if it is more than one item, it will be much more difficult to figure it out.

I would have never been able to figure out all my intolerances if I would have taken them out of my diet one at a time!

RockHammer Rookie
RockHammer
Posted
I think a better suggestion would be to do a true elimination diet. Meaning cutting out all the most likely culprits at the same time, and then, after at least a week, trying them one at a time, a few days apart.

Because otherwise, if it is more than one item, it will be much more difficult to figure it out.

I would have never been able to figure out all my intolerances if I would have taken them out of my diet one at a time!

I agree with Ursa Major. I was diagnosed at the age of 56. By that time I had been misdiagnosed and untreated for so long, the damage to the GI was major. Two week will not do the job. At a year totally Glluton Free, I am making progress, but still have a long way to go before I can think even about going back to work, or finding a new job. I was fired with celiac disease by the State of Florida last year.

Believe me, it is a long process.

RH

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