Gf After 3 Years And Still Not "better"

[SJN1279]

I'm nick and this is my first post to this message board. I was diagnosed with Celiac Disease over 3 years ago. After years of people thinking I was faking and pure intestinal torture, i adopted the diet and finally began feeling relief. Granted, I do make an occasional mistake(I was taking Maalox up to this year!) but overall I am much better than I originally was.

My current progress is that I have roughly 3 days wear I feel excellent and 3 days were a feel not so good. All I consume are Gluten-free foods and I was just wondering is it "normal" to never feel perfect?

I have some brief questions, if that is okay?

1. What symptoms did you have with Celiac? I had numerous symptoms (sexual, strep, fatique) that weren't clearly defined under any celiac-symptom guide.

2. I consume rice crackers that say they are gluten free on the package, but also say they may contain wheat due to cross contination in little print. Should I stay away? I also consume Gorilla Munch cereal and that says it may contain traces of peanuts and I have been tasting peanuts my last four boxes

3. Has anyone hear ever gone to see Dr. Peter Green in NY? I saw him a few months ago(as a belated second opinion)and I thought he was really unprofessional. At first he said that I didn't have Celiac Disease without looking at any tests. He also prescribed an anti-depressant just because he thought it was all in my head. However once he the test came back that I had low cholestorol, he now wants to put me through the full testing procedure. I heard he was one of the best in the field, does anyone have any experience with him? He hasn't returned my calls for two weeks, but I think testing may be a good idea right about now..

Sorry about ranting

I look forward to talking to all on here.....sorry for any mispellings, I'm bad at checking my work

Nick

[frenchiemama]

Have you been tested for any other food allergies or intolerances? That would be the first place I would look.

[jknnej]

Nick,

I know how you feel about never feeling perfect. I never do, either. I have a friend or two that do not have Celiac that are like me also. We must have something else going on with our bodies.

I would stay away from those crackers..better safe than sorry.

My symptoms before going gluten-free were bloating, diarrhea, cramping. Now that is gone but I have other problems such as voice loss, nausea, anxiety, etc. that I never had before going on the gluten-free diet.

I live in Arizona so I can't say I've been to a dr. in New York. But if he was not a good doctor, I wouldn't go there no matter who recommended him. Part of being a good doctor is listening b/c most of the time you have done more research on the condition than they have!

Good doctors are rare; I have only come across a few in my life and out of all of the docs I've been seeing lately, I only like my GI doctor.

Good luck and I hope you get better!

[SJN1279]

I have been tested for other intolerances, but not for a while. My main symptoms are gas, bloating and constipation. I appreciate the quick responses. Maybe I should stay away from those crackers.....need to find a new snack

[KaitiUSA]

Hey Nick

Dr Green is supposed to be an excellent celiac doctor. He is considered one of the best. However, I did not see him personally but I have went to other doctors who thought it was in my head and I switched doctors a few times. If you did not like him though, then find a different doctor.

How were you originally diagnosed?

If you had blood tests to diagnose you have you had a followup to see if the #'s came down?

If you had a biopsy have you had a followup done to see if the damage healed?

Have you changed products such as shampoos and things like that which can get into your mouth very easily? If your girlfriend eats gluten does she kiss you directly after? Things like this can contaminate you...so you have to be really careful.

Testing for food intolerances again may be something to consider. What did the tests show last time you had it done?

What I did for a while was keep a food journal and then mark when I would feel bad and I tried to pinpoint what was making me feel bad. Even if you feel bad a few days later you can look back on the foods you have ate over the past few days and maybe make a correlation.

Since you are still having symptoms the best thing to do is stay away from those crackers and see if that marks some improvement.

There are over 200 symptoms with celiac so it is very broad and some people don't get any symptoms at all. For me I had nausea, anxiety, weight loss, fatigue-those symptoms had to be the main ones. I did have other symptoms but they were minor compared to these.

After gluten free the symptoms improved by month 3 and went away almost completely by month 8. However, when I am glutened, alot of these symptoms come on strong for about 2 weeks.

[Guest nini]

I'm 2 years gluten-free and although I feel A LOT better, and I've gotten off almost ALL of the medications I was on (still waiting to be able to get off Atenolol), I am still having occasional bouts with the big "D" and my joints and muscles hurt and ache all the time. I'm sure I may be accidentally getting "glutened" somewhere, but I'm not sure where. It could be my house since my husband isn't gluten-free and I can't seem to get him to stop leaving crumbs in things. Anyway, I think it is possible that there is still something else going on with me but I really don't want to go through more testing to find out. (just stubborn and stupid I guess!)

[tarnalberry]

Since you are still experiencing problems, yes, I would stay away from items at risk for cross-contamination, like the rice crackers. That does restrict your options, as there aren't that many things produced on gluten-free-dedicated lines, but until you feel better, you need to be conservative.

You mention your primary symptoms being gas and bloating at this point. Have you tried eliminating dairy and/or soy? Are there certain fruits or vegetables that are more likely to cause this than other things you eat? Those two culprits are pretty common causes.

[Guest Viola]

If you have stayed gluten free, any tests you may have now would show a false negative I believe. I think you have to go back on gluten foods for several weeks to get proper test results.

[SJN1279]

I eat Soy yogurt and Soy Cheese Pizza, but am trying to avoid dairy. 3 years ago they said I wasn't lactose intolerant, but who knows. I also eat spinach, carrots and citrucel fiber almost everyday, which may give gas. But without those things, I more than likely won't have a bowel movement.

[tarnalberry]

Unfortunately, avoiding dairy can be just as tricky - if not harder - than avoiding gluten. Are you confident that you have eliminated all sources of lactose and casein? (Medications often have lactose, and many many things have casein in some form or another. In fact, if you're eating soy cheese, it's almost guaranteed that you aren't dairy free, because there are only two, hard-to-find, brands of truely dairy free cheese.) Many doctors don't go past investigating dairy as a lactose problem, but besides having issues with the milk sugar, you could have a problem with the milk protein.

Also, the soy can be a problem as well, and might be something else for you to try eliminating for a few weeks. (I know it sounds like a lot of eliminations, but it's a test.)

[SJN1279]

I know i consume Casein....and I do have milk in certain products. However, wouldn't my blood tests state an allergy to either?

[KaitiUSA]

They would only detect an allergy if there was a true allergy...maybe you are not allergic but are just sensitive to it...did you have an allergy or intolerance test done?

[celiac3270]

Dr. Green is the most knowledgeable in the field. Whether or not he is professional as a physician, I can't tell you.

[SJN1279]

I will have to give Dr. Green another shot. I have nothing to lose except for 10 dollar co-pay and bridge tolls. Maybe he can actually help.

[tarnalberry]

nope, unless you went through York for IgG antibody testing, your blood tests wouldn't have identified a casein intolerance. if you had serum allergy testing, it would probably have revealed an IgE allergy to casein, but the two are different reactions in the body. for me, my reaction to casein is actually quite like my reactions to gluten, but it was hard to identify that until I did an elimination diet, cutting out... the vast majority of foods... and then reintroduced dairy in specific tests twice - two separate occasions during the course of a week. soy can be much the same.

it's unfortunate that doctors don't better recognize non-IgE food problems; it could save a lot of their patients a lot of trouble.

[printmaker81]

Nick,

I don't think you necesarily have to be allergic to dairy and soy for them to be hard on your body. My doctor, who is a celiac himself, told me to stay off any dairy or soy for at least a year so my gut could make a complete recovery, even though my blood results were negative for an allergy. Have you had endoscopy to access the damage? Maybe your gut hasn't had the chance to really heal up properly.

Also, I have had a hard time with Gluten-Free products. Anytime, I have eaten breads or cookies or even gluten-free pastas, my stomach gets upset. I think it's all the processing. Maybe try to stick to things that are naturally gluten-free and not so processed.

I hope you find out something and start to feel better.

Good luck with the doctors, too