Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Frustrating...
0

9 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:
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!
0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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. :ph34r:

0

Share this post


Link to post
Share on other sites

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% ?

0

Share this post


Link to post
Share on other sites




Rachel - What about the other 5% ?

<{POST_SNAPBACK}>

:lol::lol: 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. :blink:

Thanks for pointing that out Mom. :ph34r:

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,665
    • Total Posts
      921,655
  • Topics

  • Posts

    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,663
    • Most Online
      3,093

    Newest Member
    Steph0903
    Joined