Is A Week Long Enough?

[ohsotired]

I have many of the classic symptoms that I've read about here (bloating, lower intestinal cramping, irritability, anxiety, depression.......a very long list). I started a gluten-free 'trial' diet three days ago to see if not eating gluten would make me feel better.......and so far so good.

Cramping & bloating has decreased substantially, my brain doesn't feel quite so foggy today, and I'm actually in a decent mood.

I didn't expect to feel this much better in this short amount of time!

My plan was to try this and see how that went, and then to gluten myself again and see what happens so that I can go to a doctor's office armed with this information.

I'm wondering if a week is a long enough trial for the gluten-free diet?

I mean, I know everyone is different, but I'm not sure I want to be on it much longer than that before taking on my mini glute challenge, because I fear my reactions will be that much worse.

I'm also aware that a positive response to the gluten-free diet is a positive diagnosis in some people's eyes, so why would I gluten myself if the diet seems to be working? I have a teenage daughter that deserves to know if it's celiac disease, as well as several other family members that have long suffered with digestive issues.....so I guess I'm making myself the guinea pig.

Thanks in advance!

[Ursa Major]

Apparently, three days is enough for you to realize that gluten is a problem for you! Because you are already seeing positive changes.

If you are on the diet for longer than a week, any testing you will have may turn up false negatives. You may have worse reactions to gluten even after a week.

I understand why you would want to have the official diagnosis. I almost wished I would have done the testing before going gluten-free for my kid's sake, too.

But I was incredibly ill by the time I figured it out and was afraid of dying if I ate gluten for another day, never mind several more weeks or months for testing. I guess I didn't really have much choice. I am glad you do.

Keep in mind that celiac disease testing is not all that reliable and yields many false negatives even with people who have celiac disease. So, after all testing is done, it would be advisable to go back to the gluten-free diet no matter the test results.

[ohsotired]

I was certainly surprised that after only three days I'm feeling positive changes.

I don't *want* to gluten myself again, but for the sake of possibly getting a positive diagnosis, I think I can put myself through it for a while longer. I've felt pretty bad for the last six years or so, but I know that there are others here who have had a way worse time than I.

I have to confess that I do have another reason for wanting a positive diagnosis with testing........my husband doesn't believe any of this.

He actually said to me just a little while ago "You're just going to have to eat gluten again at some point, I mean a little bit won't hurt you."

And he actually rolled his eyes at me when I said "It will if this is Celiac Disease."

Do you really think that a week of gluten free would be long enough to render blood tests false negative? What about an endoscopy?

(Granted, I'm not scheduled for any of these things yet.....) EnteroLabs testing doesn't matter if you're gluten-free or not, correct?

I had definitely planned to go back to gluten-free once all testing was done.

[Katsby]

  ohsotired said:

I was certainly surprised that after only three days I'm feeling positive changes.

I don't *want* to gluten myself again, but for the sake of possibly getting a positive diagnosis, I think I can put myself through it for a while longer. I've felt pretty bad for the last six years or so, but I know that there are others here who have had a way worse time than I.

I have to confess that I do have another reason for wanting a positive diagnosis with testing........my husband doesn't believe any of this.

He actually said to me just a little while ago "You're just going to have to eat gluten again at some point, I mean a little bit won't hurt you."

And he actually rolled his eyes at me when I said "It will if this is Celiac Disease."

Do you really think that a week of gluten free would be long enough to render blood tests false negative? What about an endoscopy?

(Granted, I'm not scheduled for any of these things yet.....) EnteroLabs testing doesn't matter if you're gluten-free or not, correct?

I had definitely planned to go back to gluten-free once all testing was done.

I tried out the gluten-free diet just like you then back to gluten, but I got so sick that I turned right around and went back off of gluten thinking that if I had enough damage then it would still show two weeks later at my endoscopy. Plus I was so sick I could barely go to work. Well all of my biopsies were negative except one that was iffy in their eyes. I have responded well since day 2 of the gluten-free diet so yes it can make you feel better that fast. Just be careful going off of gluten too long if you want those positive test results.

[Ursa Major]

No, one week shouldn't matter, especially since you will start gluten again afterwards. Just make sure you have eaten gluten again for at least a week before doing the blood test. Your villi can't heal that quickly, and it shouldn't effect a biopsy at all.

Enterolab testing will be accurate up to a year after starting the gluten-free diet, so that venue will be open to you for quite a while. The problem with Enterolab is, that most doctor won't recognize the validity of their testing yet. I don't know if your husband would believe in their results or not.

[ohsotired]

Katsby, even your 'iffy' biopsy wasn't sufficient? Wow. I am guessing you didn't stay quiet about the fact that on a gluten-free diet you felt much better? And I'm guessing the doctor's didn't listen?

Ursa Major - I don't know if my dh would believe the Enterolab results or not, as they don't specifically say 'celiac disease' correct?

But at least it would be something....

Based on what Katsby said, I'm tempted to start glutening again tomorrow, and call for a dr appt asap. I'm sure it will be at least a week before they can get me in anyway......*sigh* This sure isn't easy, is it?

[Katsby]

  ohsotired said:

Katsby, even your 'iffy' biopsy wasn't sufficient? Wow. I am guessing you didn't stay quiet about the fact that on a gluten-free diet you felt much better? And I'm guessing the doctor's didn't listen?

Ursa Major - I don't know if my dh would believe the Enterolab results or not, as they don't specifically say 'celiac disease' correct?

But at least it would be something....

Based on what Katsby said, I'm tempted to start glutening again tomorrow, and call for a dr appt asap. I'm sure it will be at least a week before they can get me in anyway......*sigh* This sure isn't easy, is it?

Well I'm no expert and these folks know a lot more than I do. I've only started this whole gluten free thing for a month now. I doubt my villi were very damaged honestly since they couldn't find much though I had mucosal changes to my duodenum. The Dr. even told me it was possible they caught it at the beginning or maybe that I am just gluten intolerant. The problem I had mostly was not knowing for sure. So I was just suggesting to definitely eat gluten at least a week or two before your tests to have that solidly in your mind that nothing affected your tests.

[elonwy]

Hopefully he'll get over himself once you have a diagnosis. I knew what I had as soon as I read about it, but stayed on gluten to get the blood test, which was positive, and then stayed on it the two weeks waiting for my biopsy. I used it as a "last hurrah" to gluten. I ate everything I though I would miss, and was deathly sick the whole time. I went off gluten the day after the biopsy and haven't looked back. I understand needing to get a real diagnosis to convince people. Good luck, and I hope you feel better soon.

[ohsotired]

elonwy,

I don't know that it's so much that he needs to 'get over himself' but I think he doesn't understand that celiac disease is REAL, and that my whining and complaining for the last six years may actually have a cause.

I haven't shared much of my research with him, as he thinks I'm a 'self diagnoser'.

Seeing that he has ADD and had to lay it all out for me when he was diagnosed (I just didn't understand, and he actually had to diagram out for me how his brain functioned!) I would think that if I presented him with a positive diagnosis, and a bunch of printouts from various sources that he would get it. But I can't just tell him, yep I have it without a doc saying so.

He's just funny like that, I guess. *shrug*

I think I'm going to stay gluten free through tomorrow, call the dr's office for an appointment and then make a decision on when to start the glutening. I feel pretty good right now, and I'm a little scared to put that junk back in my body.