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Member Since 04 Feb 2010
Offline Last Active Oct 18 2014 05:13 PM

#720868 Undiagnosed For So Long…What Can I Expect?

Posted by on 04 August 2011 - 05:56 PM

I went 11 years undiagnosed & like you, felt like several years are just blurs (my twenties for me.) It DOES get better. You'll have a lot of up and downs, but as long as you're trending up overall, you're doing things right.

It does take time. I was one of the 3 days into the diet people, but that was followed by lots of downs, too. I would say the bulk of my healing was done by 6 months, a few more issues cropped up around 9 months or so, and it was a year+ before I really felt consistently good.

It's a learning curve. Keep reading. Be sure you're on top of your vitamin and mineral levels. The first few months are the hardest, because that's when you're figuring out your body's specific reactions & sorting through fact and fiction for celiac & trying to figure out what you can eat. My advice is to get a handful of foods you know are safe and build from there.

If you ever feel like you can't eat anything--like you're reacting after every meal--then you've likely been glutened in the days previous. This one took me months to realize, but I react after every meal, regardless of content, after I've been glutened (for several days.)

You might start reacting more strongly to gluten at first. Don't let this discourage you. It's your body getting stronger & your immune system more capable. I noticed that after a year, my reactions markedly decreased & now they're much lower than they were before I was gluten free, but that adjustment period can be hard. Good luck!
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#720595 Snack Bars

Posted by on 03 August 2011 - 03:19 PM

Sounds wonderful...I'll try them sometime.
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#720534 Enterolab Results Are Back. I Have Some ?s

Posted by on 03 August 2011 - 11:07 AM

Don't change your diet gradually! That may actually increase your misery, as your body starts reacting more strongly to smaller amounts of aggravating foods. Don't worry about soy or casein. Do cut out gluten and eggs (you may be able to reintroduce eggs in 6 months or so). Otherwise, try to get a healthy selection of food (you probably don't want to go overboard on any particular area) and let your body heal.

I had equal parts physical and psychological problems, and psychologically I've certainly evened out. It took a while, but I got there.
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#720532 Another Whiskey Question

Posted by on 03 August 2011 - 11:00 AM

According to a celiac who toured the JD distillery, the sour mash has gluten. http://answers.yahoo...07210758AAjvb1O (scroll down to the first other answer)

I'm one of the celiacs who can't have any alcohol distilled from gluten containing grains, but if you're drinking other bourbons then that's probably not your problem. I'd skip the sour mash and go back to something else.
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#717348 Argghh !. Why Is It So Hard To Find Out What's Happening ?!.

Posted by on 19 July 2011 - 06:16 AM

Are you sure the chicken is wheat-free? Some meat processing companies use wheat as filler to plump up meat, including chicken.
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#717345 Got Glutened... Prolonged Symptoms?

Posted by on 19 July 2011 - 06:08 AM

That is typical for me. Depending on the severity of the glutening, I have symptoms lasting up to a week or so. The minimum is about 3 days.

But since that's not typical for you, a few things could be happening. Your body might be adjusting to gluten differently now. My responses changed quite a bit over the first year. Also, as you heal, you might notice the effects more and stuff you would have brushed off before might be things you notice now.

You might be continuing to eat something with gluten in it, especially something with low-level cross contamination. You should check anything you introduced in the last week or so.

And of course, if diarrhea is your main symptoms, it could just be a bug and not celiac related.
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#698895 A Diet Without Grains?

Posted by on 12 May 2011 - 10:34 AM

Spelt is a type of wheat, so you'd definitely react to that. You might also be reacting to cross-contamination during harvesting. A lot of the grains on the market are at risk of being contaminated, so you may just need to switch brands. If you're early in the diet, you might simply be having problems digesting grains, which should pass as you heal.
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#692267 Apparently Not Celiac But Still Worried.

Posted by on 14 April 2011 - 03:33 PM

GFMama answered very well. I concur on the gallbladder. Here are a few other things, though.

A lot of people feel worse when they start gluten free. The body will go through withdrawal. Also, people start reacting to smaller amounts of gluten, so foods that were fine before might not be after a few weeks. Additionally, your villi are damaged, which limits your ability to consume large amounts of any one food, such as dairy.

3 weeks is no time at all. It may have seemed like a long time, but a true gluten-free test would last at least 6 months. Saying that you should respond in three weeks is unheard of. It takes months just to get the diet down so that you're not making mistakes, and any one mistake can lead to symptoms up to a week.

A biopsy trumps bloodwork every time.

IBS is not a diagnosis, and any doctor describing it as such isn't any good. It's like going to the doctor and saying your head hurts, and him diagnosing you as having a headache. That's nice & all, but you need to know what's causing the symptoms in the first place.

You need to go back gluten free, check everything you're eating to find out if it was cross-contaminated in factory, learn the labeling laws, check all your meds, supplements, and hygiene products, and stay that way for at least 6 months, to see if you improve. And chuck this new doctor!
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#690717 Can't Lose Weight!

Posted by on 08 April 2011 - 01:10 PM

Whoa...whoa, whoa, whoa. You don't need to be losing any weight. 103 at 5'3" isn't healthy--it's underweight. 115 is a very nice, slim number. 120 is normal. 16% body fat is something any athlete would be proud of and it is far below normal numbers.

You weren't fit at 103--you were seriously sick (from celiac.) Only 9 months after diagnosis, you need to be focused on being healthy and fit and getting readjusted to what normal is for you, body wise.
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#688138 Ibs Diagnosis But I Think It's Celiac

Posted by on 30 March 2011 - 11:39 AM

He can't rule it out completely until the biopsies are back. At any rate, you should give the gluten free diet a try. You're done with testing, so there's no reason not to. Try it for 6 months or so and see how you feel.
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#685602 Dna Test Negative

Posted by on 21 March 2011 - 07:06 PM

What did you come back as? There are a couple of people on the forum who also don't have the classic genes but do have celiac.
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#685170 Thinking Of Going Vegetarian

Posted by on 20 March 2011 - 09:34 AM

I've been veggie 14 years and gluten free 1 and 1/2. I haven't had a problem with it, nor have I felt the need to add meat back to make things easier or anything like that.

My fam has always been super supportive, both about me being veggie and gluten free (I'm the only one for both.) I don't ask them to fix anything special, but sometimes they do anyway. Generally, I just make my own meals, or I have what they're having minus the parts I can't eat. If I were you, I'd eat anything your dad cooks that you can (so as not to hurt his feelings) and then substitute other things if necessary.

Are you dairy free for good or just while you're healing? If it's just while you're healing, you might want to add small amounts back into your diet to see what you can tolerate. Personally, I'd have a very difficult time going dairy free as well, on top of the vegetarian and gluten-free restrictions.
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#682198 Tidal Wave Of Intolerance The Aftermath?

Posted by on 10 March 2011 - 10:26 AM

I felt this way after I'd been glutened, early on in the healing process. It took me a while to realize I react to everything (just the mere act of eating) in the days after I've been glutened. Basically, I was irritating the digestive tract which was already pretty irritated from the accidental gluten.

It also happened if I was getting low levels of cross-contamination repeatedly--I felt like I reacted to everything, really it was just that my intestines were constantly, mildly irritated, and any substance crossing through them made them more irritated.

In the end, I was only ever intolerant to onions, but at times when healing, it felt like I was intolerant of everything. So my advice is go through your gluten-free diet and recheck everything, especially for cross-contamination. When you start feeling like you can't eat anything, retrace your steps for a few days and see if there was a triggering point when you might have gotten some gluten.
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#681176 Antibodies Still High

Posted by on 07 March 2011 - 01:31 PM

It could be.

The first thing to check is cross-contamination in factory (assuming you already know all the labeling laws). I'd go through everything that's processed (and even things like trail mix) and check online or call the company to make sure they're gluten free and made on gluten-free lines.

Also check your vitamins, prescriptions, and herbal supplements. Nothing is automatically safe--meats can have wheat added to them, drinks like tea and instant coffee occasionally have gluten, etc. You really have to check everything.

You also might want to chuck gluten-free stuff that falls under the 20 ppm but is made on shared lines. The 20 ppm might be too high for you.

You might also react to distilled alcohols that were made from grains (like wheat vodka.) This isn't common, but it does happen.

Recheck everything you're eating outside the house, your cross contamination precautions inside the house, and then, yes, things like toiletries and pet food.

Good luck!
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#671097 Positive Blood And Negative Biopsy

Posted by on 27 January 2011 - 03:23 PM

A positive blood test is enough to diagnose celiac. Your doctor should have taken 5-6 biopsies, as intestinal damage can be patchy. It's also possible that he messed up with the biopsies or that your celiac isn't severe enough yet to cause substantial intestinal damage.

Regardless of why the biopsy was negative, staying gluten free is a must!
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