Help!

[cami]

Dear all,

After 11 yrs with periods of IBS, hives, iron deficiency and a number of other syptoms (like fatigue, bruising really easily ant bleeding spontaniously from my gums) I now belive my probems are gluten-related. And I really need som help from you guys, since the doctors don't seem to be very experienced with these issues...

I first started suspecting gluten a few months ago when, after consuming A LOT of pasta for a period, my symptoms got realy bad... I then removed all gluten from my diet for about 8 weeks. Increadilbly - after only two days I started to feel much better and did fine throughout this period.

A week ago I reintroduced gluten into my diet. At first I didn't notice anything (for about 3-4 days) and assumed it was all in my mind... But then the bloating and pain returned in a mjor way.

My questions to you:

- I tested negative for celiac disease a year ago (don't know what test they did...). Can I still be gluten intolerant?

- Is it normal after a gluten-free period to have a "delayed" reaction when re-introducing gluten - or does this indicate that I'm not really gluten sensitive.

- Over the years, my symptoms have varied a lot. Sometimes I've been just fine, and sometimes I've been really, really sick. is this normal with gluten intolerance???

Finally - what do you make of this? Would you stay off gluten if you were me even if the test came back negative. And should I see another doc??

Please help, I just don't know where to turn for reliable info on this.

Cami

[nettiebeads]

Hi Cami. I would think that your body is telling you that it doesn't like gluten. You could keep a food journal with dates, what you ate, and any and all or no reactions. Maybe if you did that for 3 to 4 weeks and took it to a dr., he might have some recommendations. Or you could "self-diagnose" as another poster or two have done and go gluten-free anyhow, just because your body feels better. And by the way, you have already tested positive for gluten problems - you did the diet challenge. That's how I was dx'd by my dr. My curren gp admits that the tests aren't realiable or as sensitive as the medical community would like them to be. There is something going on with your body, listen to it!

Annette

[RiceGuy]

I tested negative for celiac disease a year ago (don't know what test they did...). Can I still be gluten intolerant?

In a word, yes. There are different kinds of tests, but none are yet as accurate as simply changing your diet and seeing what happens.

Is it normal after a gluten-free period to have a "delayed" reaction when re-introducing gluten - or does this indicate that I'm not really gluten sensitive.

A delayed reaction is very common.

Over the years, my symptoms have varied a lot. Sometimes I've been just fine, and sometimes I've been really, really sick. is this normal with gluten intolerance???

Also quite common.

Finally - what do you make of this? Would you stay off gluten if you were me even if the test came back negative. And should I see another doc??

I would definitely stay away from gluten forever. I never bothered with any "official" testing, since the diet is the answer anyway. It is quite likely the tests would come back negative, but you couldn't get me to eat gluten again even at gun-point. Why would I want to suffer, no matter what the actual reason is? There's that old joke about a guy who goes to his doctor and says "It hurts when I do this", and the doc says "Then don't do that".

Please help, I just don't know where to turn for reliable info on this.

You have come to the right place IMHO. I've learned more here than I ever imagined I'd find anywhere so quickly, if ever. And yes, doctors are often clueless about Celiac, as with many health issues.

[cami]

Thanks for replying!!

I'm wondering - if you are gluten sensetive despite negative tests, does that mean that you don't have celiac disease (and that you can consume small amounts of gluten)??? Ie - is it another condision or a milder form of celiac disese??

/Cami

[RiceGuy]

Thanks for replying!!

I'm wondering - if you are gluten sensetive despite negative tests, does that mean that you don't have celiac disease (and that you can consume small amounts of gluten)??? Ie - is it another condision or a milder form of celiac disese??

/Cami

The tests are often too inaccurate to know. However, an auto-immune response does not depend on the amount consumed, which is why a total gluten-free diet is essential.

It may be that you don't yet have the intestinal damage, or not enough to show up in tests. If so, consider yourself very fortunate, and know that you may have spared yourself some mighty debilitating problems.

There are tests which some suggest as more accurate than most, but still it is not as good as the diet test. Ask yourself how much you want to suffer - either with or without damage.

Many whom face the prospect of "giving up wheat" ask these types of questions. It can seem difficult, but try to keep in mind that the gluten often has a grip on you much like an addiction. Many report going through withdrawal symptoms. This will pass, plus you will find yourself surrounded by a whole new range of foods you never knew existed. The best part is the improvement in health. Once you begin enjoying that, you won't want the wheat.

Besides, you won't miss anything really. Tinkyada pasta is as good if not better than the wheat stuff. Also there's everything from banana bread to pizza to lasagna, either home made or from the many companies specializing in gluten-free foods.

[traveljunkie]

Cami- your story kind of sounds like mine! I have had problems throughout my life similar to yours. After taking antibiotics, I became really sick, and soon discovered I'm intolerant to gluten. I tested positive for "dietary gluten sensitivity" with no damage to the intestines. Even though, I can ingest gluten in small amounts with no known reaction, I could be starting to damage the villa in my small intestines, so why take the chance? I will remain gluten free for life, after reading books and doing lots of research on the web about the subject of wheat. A good book for you to read is "Dangerous grains." It really helped me to stay with the diet, and I have my family on the diet as well! I feel great and for the first time in my life, Im starting to have normal bm and no itchy rashes. My brain fog is lifting, and my nose doesn't feel stuffed all the time!

I think your on the right track to better health by sticking to the gluten free diet. Do you really want to take the chance of causing damage to yourself that could lead to even more serious diseases? My advice would be, yes, stay with the gluten-free diet!

Charlene

[cami]

Thanks for your advice! I really appreciate it.

A weird thing is that I LOST weight when I stopped eating gluten... (I wasn't overweight to start with). Arn't you supposed to loose weight with celiac disease?

One final question - do I need to see the doc again (I've never had the biopsy) or should I just stay off gluten.

Ciao Cami

[cami]

Ohh, by the way. I forgot to write that I've had really strange thyroid problems in the past as well (overfunction of the thyroid gland)... which they were never able to diagnose. I've since recovered from that, but it makes me wonder... there is a connection between tyroid problems and celiac disease, isn't there?

/Cami

[traveljunkie]

Hi Cami,

I have had what the drs called borderline thyroid problems. I never treated it with drugs but the problem went away. I'm not overweight either, always had 5 to 10 lbs I'd like to lose but found extremely difficult to do. When I got sick from gluten, I lost the weight but while remaining on gluten-free diet, I have maintained my weight. I find it easier to lose a few lbs now than before going gluten free. I just have to stay away from the yummy gluten-free snacks! There full of sugar, but soooooooooooooooo good!

[Rachel--24]

Arn't you supposed to loose weight with celiac disease?

Not necessarily. Lots of Celiac are actually overweight before diagnosis.

[VegasCeliacBuckeye]

I lost 20-30 pounds after I was diagnosed.

It is possible to be gluten intolerant and not have celiac disease -- some of us think it is actually more common than celiac disease, but not diagnosed...

Two-cents...