Symptoms Unlike All Of Yours

[jamjam]

Three years ago, while at school, I would once or twice a week eat food, and then immediately (within 20 minutes) have to run to the washroom and suffer through a rather serious bout of diahrea. After that my stomach might hurt for half an hour or so, but I would usually have no other symptoms and feel fine. I was a varsity athlete and would even compete or practice a few hours after these.

After telling my dear mother about it, she told me to track what I was eating. I did, and gluten seemed to be the obvious link, so I mostly cut it out of my diet. I say mostly because I continued to eat rye bread and beer, and things that contained small amount of wheat like soy sauce with sushi and things like that. I'd be symptom free, then, like so many others, decide after a few weeks that I could try gluten again. I was almost always ok with one gluten thing, but soon enough it would catch up to me.

I've since become more vigilante, having done research into the possible long term effects of gluten. But as I read more and more of these forums, it seems like my symptoms are drastically different from everyone elses. Other people experience headaches, muscle fatigue, achy joints, all of these thing. I don't get any of that. I only have a reaction 1 out of every 10 or 20 times I eat gluten, but it's an immediate, aggressive, and short term reaction.

What prompted me to write this was someone on here mentioning that this quick of a reaction couldn't be a typical gluten allergy, but more of an anaphylatic reaction (though gluten allergy could still exist below it).

I am concerned about two things -

1) I am doing long term damage to myself - even though I am symptom free - by ingesting the tiny amounts of gluten that I consume regularly.

2) That I am making huge sacrifices when I don't actually have a gluten allergy. for the most part I find I eat healthier when I avoid gluten, so I don't mind that, but I also spend a lot more money that I don't have as a recent university graduate. I've also never had a reaction to certain things, like beer, which I drink probably three time a week (not binging all the time). I'd feel silly giving that up unnessecarily.

Please help. Advice, comments, questions - it's all welcome.

[JessicaHall]

this is a tough one ... while your keeping your food journal, do you know "exactly" makes you have that kind of reaction (diarrhea). Once you find out I would just stay away from that one thing or things that make you have to use the restroom as fast as you do. I think you need to really pin-point what is making you use the restroom instead of taking Gluten out of your diet. Because Gluten is in so many things and it seems like you really don't have a reaction that many times. I understand what your going through. Any time I eat I must be home by a bathroom. I'm an athlete as well and its frustrating for me to be somewhere and have to use the restroom like that. I'm still very embarrassed. I hope this helps. Good Luck!

[zkat]

If you want hard answers, then you will need to go through either an elimination diet or testing. For years I tracked my food to see what was bothering - pizza, spaghetti, some BBQ and sandwhiches. If I had my guess, it would have been tomatoes. Nope - it was wheat.

My uncle is diagnosed with biopsy and blood test. His reaciton is quick and swift. He will throw up within the hour of eating gluten and then will have diarhea until it passes. My reactions are more delayed - usually by 24 hours.

Most of the reactions you listed - Headache, muscle fatigue, joint aches etc are more of a long term reaction and are a direct result of vitamin and mineral defieciencies caused by years of damage. Chances are, if you are celiac and continue to eat gluten you will have the same reactions in time.

Some people need the testing to convince themselves, others do not. Only you can decide which one is you.

[misslexi]

Have you tried being tested for allergies?

I cut gluten out of my diet and react rather violently when i accidentally ingest it. No matter what form its in.

If you only react sometimes, maybe its something different but in the same things as gluten.

[mushroom]

I have never had headaches or any neuro problems. I developed muscle weakness and joint pain later but that was because I had developed psoriatic arthritis (and the skin problems and itching that goes with it).

For me, the kind of reaction you are talking about came from lactose; half an hour after frozen yogurt or ice cream I would be in the toilet. We are all different. My gluten reaction was always extreme bloating and gas, enough to make me pass out. So you can't base your reaction on that of others. Each individual has their own unique set of symptoms which is what confoozles the heck out of doctors.

[Lanie940]

If you truly are Celiac, then continuing to eat gluten is not good for you and you will not be able to heal what has happened in your sm intestine. I had off and on symptoms of IBS for many months. The first GI Dr. wrote me off as having IBS. I was having frequent bouts of diarrhea, I'd loose a few pounds every time and not re-gain it back. Then I'd be normal for awhile. Other symptoms of Celiac which neither my first GI Dr.could put 2 and 2 together and realize he should have tested me for Celiac was horrible farts(embarressing!)Stools that floated and were difficult to flush. I told him AND my Primary care physician, neither concluded it was possibly Celiac. I continued to loose weight. From November 08-Feb of 09 I lost 20 lbs.From Feb09-Aug 09 I lost another 20 lbs.Then I lost another 25lbs, total of 65lbs. My new GI Dr. said IBS will cause you to loose some weight during the diarrhea phases, but you should't loose as much as I was loosing so quickly. I never had headaches after eating gluten.

What brought my Celiac to a head was after my hernia surgery, I got a UTI from being catherized in the hosp. I was put on CIPRO. It gave me diarrhea, I was going several times a day even taking Imodium. The week before T-giving My surgeon who had done my hernia surgery had put me on Flagyl for the diarrhea, the thought at the time I might have C-Diff. He then wanted me in for a sigmoidoscopy. I was neg for C-DIFf. With going so much I got dehydrated, was in the hosp for 6 days. It was then they ran more tests, another colonoscopy, an EGD and sm bowel series, it was then the new GI Dr. who diagnosed the Celiac. Have to say, I didn't know whether to cry of just be glad they finally knew what was going on with me and how to manage it!

[RiceGuy]

I've read that statistically, about 30% of Celiac individuals have no outward symptoms. So it isn't such a good idea to judge whether gluten bothers you based on noticeable reactions. Also, many on this board have reported that they don't always have a reaction.

Additionally, keep in mind that even if you are gluten intolerant, but don't have Celiac Disease, you may develop it at any time. There seems to be a fine line between the two, and constantly antagonizing the immune system seems like a good way to push it over the threshold.

I hope you don't have Celiac or gluten intolerance, but neither is something to fool around with. Get the proper testing if that's what you need to make a commitment, but keep in mind that the best tests have a high degree of false negatives. The best test is still the gluten-free diet, and it sure looks like you've gotten an answer there. However, to pursue testing, you'd have to be consuming gluten every day for at least six weeks to give the best chances of an accurate result, which again is not particularly high.

[jamjam]

Thanks for all the replies, this board is great.

I've talked with my doctor about it before and her faith in the tests wasn't all that high, so she really recommended that since I was already basically on a gluten free diet that I just stick to it. I think my next move is to get to a dietician and go through some testing and see if I can pinpoint something beyond gluten that is bothering me. As I said, at this point its merely an inconvience, and I'd rather deal with that than risk running serious long term health problems.

The one consistent gluten containing item that has never bothered me is beer, is there any reason for that to happen? I know that when some alcohol beverages are distilled the gluten is supposed to be removed, but beer isn't distilled, correct? It should definitely have gluten in it. Yet I drink it fairly regularly without any kind of problem. Could the alcohol somehow be countering the gluten or my immune reaction to it? That doesn't seem to make a lot of sense, nor have I ever heard of anything like that, but what else could it be?

[mushroom]

Thanks for all the replies, this board is great.

I've talked with my doctor about it before and her faith in the tests wasn't all that high, so she really recommended that since I was already basically on a gluten free diet that I just stick to it. I think my next move is to get to a dietician and go through some testing and see if I can pinpoint something beyond gluten that is bothering me. As I said, at this point its merely an inconvience, and I'd rather deal with that than risk running serious long term health problems.

The one consistent gluten containing item that has never bothered me is beer, is there any reason for that to happen? I know that when some alcohol beverages are distilled the gluten is supposed to be removed, but beer isn't distilled, correct? It should definitely have gluten in it. Yet I drink it fairly regularly without any kind of problem. Could the alcohol somehow be countering the gluten or my immune reaction to it? That doesn't seem to make a lot of sense, nor have I ever heard of anything like that, but what else could it be?

Yes, beer is a definite gluten no-no, for the reasons you stated. But this problem is a sneaky one. I didn't wake up to it because I never had problems with bread, believe it or not. I knew pasta was a problem for me, but because I could eat bread without ill effect I didn't think of flour as being a problem.

Good luck with your journey.

[rueyn]

Thanks for all the replies, this board is great.

I've talked with my doctor about it before and her faith in the tests wasn't all that high, so she really recommended that since I was already basically on a gluten free diet that I just stick to it. I think my next move is to get to a dietician and go through some testing and see if I can pinpoint something beyond gluten that is bothering me. As I said, at this point its merely an inconvience, and I'd rather deal with that than risk running serious long term health problems.

The one consistent gluten containing item that has never bothered me is beer, is there any reason for that to happen? I know that when some alcohol beverages are distilled the gluten is supposed to be removed, but beer isn't distilled, correct? It should definitely have gluten in it. Yet I drink it fairly regularly without any kind of problem. Could the alcohol somehow be countering the gluten or my immune reaction to it? That doesn't seem to make a lot of sense, nor have I ever heard of anything like that, but what else could it be?

Just wanted to ask - are you only eating gluten by itself when you're getting sick (i.e. a plain piece of bread), or are you seeing links to things like pizzas, pasta, etc.? The reason I ask is that after going gluten-free I still had problems, and I ended up narrowing it down to dairy products. So if you're eating a pizza and having symptoms, maybe it's not the gluten, but rather the dairy? Lactose intolerance happens like you've described - 30 minutes after eating your stomach goes nuts and gets rid of the dairy in a hurry. After the expunging you feel fine...until you eat dairy again.

Just my 2cents

[CMCM]

The really crazy, insidious thing about celiac disease (and this is probably also true of gluten intolerance without celiac disease) is the nature of its symptoms: they can be all over the map, and can even vary with one person and vary from reaction to reaction. It's not necessarily all the same all the time.

Take myself: I see some similarities with what you have experienced. I spent my ENTIRE life from zero to about 56 thinking I was severely lactose intolerant. And I was, but it wasn't as simple as that. My mom was finally diagnosed with celiac disease when I was about 16, so I knew about that. I knew I had a chance of developing it, but since whatever was going on with me wasn't the same as my severely reactive mom, I dismissed celiac disease as a cause of my own complaints. When I finally began to suspect celiac disease, I went the Enterolab route and learned I had the celiac gene, and the testing revealed antibodies suggestive of celiac disease as well as reactions to casein in dairy products. Since all this came about, I have never been eating enough gluten to get a solid blood test diagnosis, and interestingly, I can't bring myself to eat enough to do that test. That should have told me something, right?

I've struggled with being 100% gluten-free, but my slip-ups have been interesting. One time after a one month bout of gluten gluttony with no huge reactions, literally overnight one day I woke up with hands, fingers and wrists that hurt so bad I could barely hold a glass. That frightened me back into compliance again, and the aches disappeared.....very fast at first, but it took a few months to completely go away. On other occasions, I've felt very sick a few hours after eating.

I've learned in the last 5 years that while I can always "get away" with eating a little gluten here and there, with no immediately identifiable reaction, repeated eating of it will eventually create a health event of some sort. In the end here, I've reached a point (long time coming) that I simply MUST avoid gluten, PERIOD. Even without a medically accepted diagnosis, the writing really is on the wall. And from everything you read out there these days, it is looking more and more like NOBODY benefits from gluten, especially considering the mega-intensity gluten that has evolved over the years.