A Few Questions

[onamission]

I haven't been dx'd with anything yet. I've had mysterious symptoms the past 8 years or so. Just recently they took a turn for the intestinal, so I'm back looking at the celiac angle. I'm trying to notice some sort of pattern/connection with my symptoms and what I eat. No conclusions yet. But here is my first question: Is it possible - or likely to have simply (?) a wheat allergy, but okay with the gluten? (so it would be okay to eat all other grains except wheat)

I've been reading some of the posts here and notice that many do not have a positive blood test, though they have responded well to gluten-free diets. What's the point of the tests, if so many are negative (probably a false negative?)? I know one reason for a test is that it would be more likely for some to do the diet. I believe I'd fall into that category. But if I were to get the test and it came back as a false negative...then I'd be fooled into thinking it's okay to eat gluten. I guess I'm a little confused on that. It's such a huge change, that I KNOW I'd have to have a doctor tell me...if you don't eliminate it from your diet, you will get very, very sick. That's the only way I could stick to it. I know me. I'm stubborn like that.

Also, if celiac is the small intestine's inability to digest gluten, why don't all people have symptoms when they are young? I notice many (including me) didn't show any symptoms until sometime in their adult life. I don't understand this.

I notice one of the symptoms of celiac disease is weight loss, yet some of the celiacs I know are overweight. Anyone have an explanation? Of course, that's NEVER one of the symptoms I ever show!

Thanks for your time!

[darlindeb25]

onamission cute name---anyways--i didnt lose weight until i went gluten-free--i truly believe there are as many heavy celiacs, as underweight--we are all different--a person like me that was heavy before going gluten-free--the weight is just another way our body reacts to not being nourished properly--once i went gluten-free, the weight started coming off---i had diarrhea all the time--some people never do--there isnt a standard symptom for celiac--some of us have many symptoms, some dont have any---i was diagnosed with everything except celiacs and after going gluten-free--i dont ever need a diagnosis--i know what my problem is and i will be gluten-free forever deb

[onamission]

Yea, I guess it all doesn't have to make sense to me. Were you "officially" diagnosed, or self diagnosed? If self, how did you decide it was gluten intolerance versus wheat intolerance?

Thanks!

By the way...you'd think the possibility of my losing weight if I went gluten-free would be enough to try it. Sigh. Guess I'm just THAT stubborn. But it is something to look forward to.

[lovegrov]

Blood tests aren't always useless. I was in the hospital essentially dying of malnutrition when my tests came back VERY positive. Without the blood tests I might have died of a mystery disease.

As I understand it, somebody with a wheat allergy might or might not be able to eat rye or barley. Some people with a wheat allergy can also eat something like spelt, which is a low-gluten type of wheat. People with celiac can't eat them because even if there's no obvious reaction, you're doing damage every time.

richard

[dbuhl79]

I have to agree with Richard on this. Blood tests can be very useful. Its just things can be missed its a fact. They are not 100% accurate, in catching it all. But they do catch a lot of significant things.

Mine personally came back negative, and my GI specialist made no effort to follow-up with me after that. Fully knowing I could have chrons, colitis, IBS anything else. All I can say is that I'm not in pain and spending 80% of my day in a bathroom since I stopped eating gluten. May it be just wheat or something else I can't tolerate, I don't care, I feel like a whole person again.

So good luck with your decision. Its different for each one of us..

[onamission]

Thanks for your responses. I guess I was trying to avoid cutting out so much if it wasn't necessary. But I don't know which is harder...to cut out any and all wheat, or to cut out gluten - which would include wheat, barley, rye and possibly oats, in addition to any of the added ingredients in foods. But either way, I probably won't be able to stick with giving anything up for long term unless I have some kind of test telling me something. We'll see. I guess if I get sick enough, I'll try anything, eh?

Thanks again for the responses.

[darlindeb25]

none of us can tell you what to do--we can only tell you what our experiences are and as for me--i dont need a doctors diagnosis--someday if money permits, i would like to have enterolab tests done, but if not--doesnt matter--i know i am at the very least gluten intolerant and possibly celiac--my sister is celiac and we have had the very same symptoms forever and now my father has been put on a gluten free diet as well--i know gluten is my problem--wheat makes me very ill--diarrhea and all--barley seems easier on me, but i believe is still doing damage inside--i will never go back to gluten-- deb

[cynicaltomorrow]

I've been gluten-free for 6 months (after being diagnosed as gluten intolerant), and now, I can't even imagine going back to a gluteny diet. Most of the junk that people eat has gluten in it, and I think that just makes you feel even better when you go gluten-free. I feel healthier now. I'm actually eating vegetables! I've even lost about 15 lbs. Of course, you have to add in the cheese I'm not eating. After going gluten-free, I noticed that dairy gives me problems, too. I really don't mind all that much now. Unless there's a yummy slice of pizza in front of me. Then, I must control myself.

[pixiegirl]

I've been gluten-free now for oh.... about 6 weeks and even after this short time, I would not go back to eating gluten, I feel so much better. I don't have a real diagnoses either, my original doctor hinted that it was in my head or IBS. I just changed doctors because of his attitude and my new doctor is sending me to a GI specialist and when I told her my blood tests were negative but that I'm feeling wonderful on a gluten-free diet, she said, well then its plain to see there is some sort of gluten sensitivity going on. I did my EnteroLab test last week and she is very anxious to see the results.

One thing that really surprises me... and I know we all have to make our own decisions in life... but that people will have symptoms and not try gluten-free. To me that is unreal, I don't mean to offend anyone but its just gluten its not.... well its just food for a couple of weeks.

My mom has all the symptoms that I have and she too has had them for years. I've asked her many times why she doesn't go gluten-free for a few weeks... she tells me she can't "live without bread". Ok I know thats her decision but its just so silly to me, because she can live without it! I made her some gluten-free bread and spice cake and she was not interested, its not sourdough she said... I agree, its not. So instead every single day I have to listen to her complain about her digestive problems, I deserve combat pay I swear!!

Oh well vent is over but I have always been very interested in a healthy life and its hard for me to understand that people would put their health at serious risk for a piece of bread. I don't even need a diagnoses... I know gluten doesn't do well with me.

Susan

[onamission]

Pixie,

I know what you mean. Why WOULDN'T someone try something - anything to feel better. And changing your diet - it seems so simple. It doesn't cost any extra money either.

But in my "defense" - or should I say, to further explain my hesitancy - I've tried SOOO MANY different things that haven't worked. You start to get cynical after a while. And I've wasted so much time. And money. Oh the money. And, while I do love my bread, I can give it up. And I have in the past. But if only it were that easy. From what I read, gluten is in EVERYTHING. Well, almost. If it were just giving up bread...no problem.

I also have the personality that I need to know why for everything. It drives my friends nuts. About a year ago I was in a car accident and broke a few bones. Every once in a while, I get an excruciating pain that almost literally knocks me to my knees. But I can deal with it. Because it makes sense. I know why it hurts. I can deal with anything if I have the reason.

So that's part of my hesitation. I will more than likely try gluten free. I do want to have some hidden allergies tested in the new year, when benefits kick in again. That may be all I need. But no matter what that says, I think I will at least give gluten-free a shot. By the way...on average, how long does it take before you notice any changes?

Thanks again!

[darlindeb25]

everyone is different---some of us notice immediate change--some take longer to notice and we all have setbacks that make us feel like, "is it all worth it?" and it is worth it---it could take 1 year or 2 years or 5 years for you to heal, but it's worth it--i have been gluten-free for over 3 yrs now and i still make mistakes but, i will never go back to gluten never, ever, i am that sure that gluten messed with me for my whole life--sometimes i feel like i need an adult with me in the grocery store to read ingredients though---deb

[Teeny]

Onamission -

It took me 15 years and 4 doctors to finally find out what was making me so ill, and yet, I still struggle everyday with NOT eating gluten (to me it was the only food group!). However, knowing the the long term affects that the disease can have (and even the symptoms experienced now) is enough to help me say no.

Like everyone else on the boards, I had different symptoms. For me, there are a lot of the bowel issues present, weight GAIN (of course ) and multiple absorption issues. The worst being severe anemia and having had multiple blood transfusions and iron infusions to keep me going and help sustain my pregnancies.

The other thing that I wanted to mention is that my son is also a celiac and has been gluten free for 4 years. When we first put him on the diet, however, he had at that point self-limited his diet to gluten containing foods. This caused a very serious onset of withdrawl symptoms when they were removed. I spoke with our doc (who is awesome) and he said that there are Celiacs that do actually form an addiction to the very thing that makes them ill. He said that they act like an opiate would. Luckily the reaction only lasted for the first couple of months and now that his diet has been straightened out he is infinately better.

The important thing is to keep looking for your answer, don't give up, and if you have to, switch doc's until you find one that will listen.

[Deby]

onamission

I agree with your thinking. If you know your personality, and I assume you do, then get a diagnosis.

I have twin sons, both with celiac. Michael was diagnosed first at age 3. He was part of a study here in Denver that is looking for causes of celiac disease. He got enrolled because he showed a high genetic predisposition. Michael's twin, David was still testing negative to having the antibody. At that time I was told that David had a 98% chance of developing celiac disease some time in his lifetime (this is because the boys are identical twins sharing the same invironmental factors) Now whether that percentage is right or not, I don't know, but I knew in my heart that David would get celiac too. But I also knew his personalty. David would go off the diet without a doctors test to wave in his face. I could just envision his teen years, what a nightmare.

So I waited 3 years to get David a positive diagnosis. We had 2 different antibody tests which finally went positive when David was 5. His first biopsy was negative. I had to wait a year for another biopsy. All the time he showed symptoms, terrible gas, so bad that in school he could always be counted on to let loose. Good thing boys can do that sort of thing in kindergarten.

At his second biopsy he came back barely positive. The GI doc only agreed to call it celiac because of Michael's diagnosis.

I myself was not positive on the antibody. I never had a biopsy. I wouldn't go back to gluten for anything. Of course I felt like I was dying. I don't read that level of trouble in your posts. But maybe you don't want to wait until it gets that bad.