How Frustrating...

[lorka150]

To make a long story short:

I felt very sick for a long time. Had lots of the symptoms. Investigated celiac. Figured it might be an answer. Had the bloodtests. Prior to bloodtesting I maybe ate one wheaty grain a day (was never a huge grain eater). Made an effort to have a big bowl of cereal that morning.

Only got back EMA (or whatever that one is... The one that is either positive or negative). It was negative. The others have yet to come back - it's been about 6 weeks.

I went gluten free about two days after the bloodtest. Sick of feeling sick. Since then, I have felt better. Some things went away: bloating, extreme fatigue, this and that. Some things still occur (lots of pooping, fatigue occasionally after eating).

After a few weeks, saw another two doctors, both of which said if I am feeling better then it sure looks like I am celiac (I had/have so many of the symptoms).

There has been episodes where I think I've gotten glutened.

I've been really careful - switched all my products and such.

Anyway...

I'm frustrated. Even when I am really careful, once in awhile I feel like I was 'slightly' glutened. Like when I eat something, I get dizzy and tired - but not extremely dizzy and tired like when I am more positive that I ingested gluten.

So it's been about 6 weeks. Overall, I feel better, but some days I still get this and that. It makes me doubt this whole thing. I don't know what I should do. I am afraid to do a self-test, and think that it might be too soon.

Either way, any ideas? Thoughts?

Going on a high gluten diet is sort of out of the question because a lot of the foods bother me so much, that I can't physically do it - I have never ate more than one grain serving a day, maximum. So I don't know.

Also, are there different levels of glutening? I mean, say my shampoo had it (even though I know it's gluten-free), would that cause less of a glutening than, say, eating a product that was cross contaminated?

Also, when you get 'glutened', could you feel REALLY bad for about two days, it let up maybe for one, and then maybe return with a trigger to your digestive system? IE, a few days ago, I had a brutal reaction, felt like garbage for two days, and today I felt great til after dinner (and I know it was gluten-free), and I got dizzy and fatigued for about an hour... Then felt fine again.

Oh my.

[Carriefaith]

Prior to bloodtesting I maybe ate one wheaty grain a day (was never a huge grain eater).

That may have not been enough wheat to result in a positive blood test; therefore, the test result may have been a false negative. If you feel a lot better on the diet, then I think that your doctors are right, you could have celiac. If you don't, then you would most likely have an intolerance or a sensitivity to wheat/gluten based on the positive dietary response.

So it's been about 6 weeks. Overall, I feel better, but some days I still get this and that. It makes me doubt this whole thing. I don't know what I should do. I am afraid to do a self-test, and think that it might be too soon.

Be patient I know it's hard because I have been there myself wondering why I'm not getting better. It may have month or even up to a year to feel 100% better on the diet. If your intestines are damaged they need lots of time to heal, depending on the extent of the damge.

Also, are there different levels of glutening? I mean, say my shampoo had it (even though I know it's gluten-free), would that cause less of a glutening than, say, eating a product that was cross contaminated?

Guten in cosmetics and gluten cross contamination can cause bad reactions and possible intestinal damage. Basically anything that goes near your mouth has to be free of gluten in order to prevent a reaction.

Also, when you get 'glutened', could you feel REALLY bad for about two days, it let up maybe for one, and then maybe return with a trigger to your digestive system?

For me it seems to depend on the amount of gluten I have. My reactions can last for 2-3 days or for over 2 weeks!

[lorka150]

Thanks for your reply. I feel a lot better now having read that. It's quite hard at the beginning. I have to keep remembering all the symptoms that have disappeared, other than the ones that are still there.

[Rachel--24]

It's quite hard at the beginning. I have to keep remembering all the symptoms that have disappeared, other than the ones that are still there.

<{POST_SNAPBACK}>

So true. I find I have to remind myself of that as well. Even though 90% of my symptoms are gone after less than a month sometimes I find myself dwelling over that other 5%. I can totally function now and I have my brain back but yet I'm like "Why is my face still puffy?" It makes me feel ungrateful for all the good things...shame on me.

[cheryl50]

Even though 90% of my symptoms are gone after less than a month sometimes I find myself dwelling over that other 5%.

Rachel - What about the other 5% ?

[Rachel--24]

Rachel - What about the other 5% ?

<{POST_SNAPBACK}>

It took me a minute to figure that out!

Maybe the other missing 5% is brainfog...which I *thought* was gone but apparently isn't.

Thanks for pointing that out Mom.

[Guest nini]

I know it's frustrating...

I'm over 2 years into this gluten-free thing, and while I'm feeling tons better than before dx... I'm still not 100%... and I've found that even walking near the bakery in the grocery store or the flour aisle will make me nauseas and give me instant brain fog. I even get upper respiratory symptoms when that happens (coughing, congestion)...

I will never ever willingly consume gluten again, I do feel so much better than I did before AND I've lost over 80 pounds in the past 2 years!

[connole1056]

You could be allergic to wheat, and not have celiac disease. Did you get a regular wheat allergy test? If you feel better on a gluten-free diet, and do not mind being on it, then it might be best to stay on the diet without a clear diagnosis. Many people eat gluten-free without it. It certainly won't hurt you to be gluten-free. The only problem I can think of now is your symptoms might be from something else that you need to have diagnosed. I would hate to have you suffering from an undiagnosed illness or disease.

It is not unusual to take a year to feel better. And who is really 100% healthy 100% of the time anyway? Everyone gets sick sometimes, right? Personally, I cannot remember the last time I really felt 100% healthy. It has to be 6 years at least, thanks to lupus. I figure 65% as areally really good day. I truly do not know what 100% is anymore. Probably wouldn't even know it if I saw it!! But as for you, perhaps you simply need to be gluten-free longer to feel really great. I do not know how old you are, but I do know that many times the longer a person is NOT diagnosed, the longer it can take the body to heal. And since you did not eat that many grains daily beforehand and still felt sick, then you could be extremely sensitive to gluten. Do you know if the rest of your diet was gluten-free-like, were you getting any hidden gluten in your diet? I ask because your intestine may have been damaged to a higher degree than you think if you were ingesting hidden gluten. Therefore, you could need alot of time to heal your intestine.

One frustrating thing is that reactions to gluten are not necessarily immediate. Sometimes they can take up to two days so it can be very difficult to determine the source of contamination. Maybe you are getting some cross-contamination here and there and are not able to pinpoint it. Does anyone else prepare your meals? Just thinking you might be getting a bit of gluten when someone else cooks for you, even when the food is gluten-free the cook might be using contaminated utensils, etc. I really hope you feel better soon.

[lorka150]

Thanks for your thoughts. I am 22 years old. I am almost positive everything is 100% gluten free, but I guess there is always that chance. I know I am not allergic to wheat (due to a scratch test).

I have been gluten free only for about 4 weeks, and casein free for about 2. I think I am just being impatient.