Symptoms

[deb]

Hello all,

I have not posted for awhile but have been reading daily. I have a question for those that have been diganosed. Prior to going gluten-free did your symptoms come and go. What I mean is I am having a terrible time.

I have been having a lot of pain. So much so that I can only sleep for 2 to 3 hours at a time, then I go back to bed and it take 30 min. to an hour to go back to sleep only to wake up in pain 2 hours later. I usally have a problem with constipation but for the last 2 weeks I can't make it to 5am before I have to go. Then this weekend we went to Denver to visit relatives and went out to eat brunch. Everyone had to wait for me to leave because I was in the bathroom. The week before we went I had to run to the bathroom at work. Both time just loose stools, but very urgent.

I have noticed that I am also more moody & space out (always have been my husband says lol), and I am extremely tired all afternoon and evening. Then yesterday I was not tired at all. I actually slept from 10pm until 4:30 this morning. I'm still in pain but nearly as servere. Is seems to be like that off & on. I will go for weeks on end feeling horrible and then I will have a day or two with almost no symptoms. The intestinal problems are different than I have had before.

I have not gone gluten-free yet as I am to have a colonoscopy the 24th. I was hoping to talk to the GI about it. The only blood test my GP ran was the Endomysial Abs, S (IGA). I have a copy of the results and The only thing it says is "negative" no values. Everything I read here says to have the other blood test, & people post values on their results. Any way I am rambling , probably that brain function thing.

Has anyone had this problem and do the symptoms just get worse? Do you just keep getting more and different symptoms? Oh forgot to say I had another tooth break last night at supper. I have had terrible teeth problems my whole life. I have had 3 teeth break in the last year and half. It is getting very frustrating. Please let me know what you all think.

[GEF]

Hello deb,

I'm not diagnosed yet, but I thought I'd ask... has your doctor ruled out IBD (Inflamatory Bowel Disease)? There are so many things that can cause symptoms like you're having and it really is important to have them ruled out. I certainly wouldn't rule out celiac... there are a series of tests that should have been run and you should request the entire profile. Glad you're getting a colonoscopy done... it's not that bad.. I had one done last month. Good luck with everything and I hope you get your answers soon

Gretchen

[celiac3270]

Sure, it can come and go......

I'm 13 and going into eighth grade...anyway, my symptoms have been strongly present since 1st grade, but 5th grade was a pretty bad year. Then, in 6th grade I was fine....only sick maybe once all year....it was amazing. It turns out that celiac disease symptoms often subside around the start of adolesence. People actually used to think that you grew out of it since symptoms would go often go away temporarily. Seventh grade was the worst time I ever had with symptoms.....and therefore, with the help of 2 doctors, I was finally diagnosed with celiac disease.

Now, when I went to a nutritionist, Anne Lee (works with famous celiac doc., Dr. Greene), she said that often symptoms get worse before they get better. After about six months, I still get sick and lately my symptoms have been worse. Additionally, I might have some other issue. Before finding celiac disease, we ran allergy tests (none), I know my thyroid is fine, strongly doubt a lactose/dairy/casein intolerance, and my new doc. (really helpful) thinks that it might be that my system has a hard time digesting fats/starches........he didn't know this when he mentioned it, but it turns out that my diet is nearly ALL fats and starches......starchy breakfast, starchy lunch, and dinner consists of starches, meats, vegetables.....snacks are often starchy or fatty. I think he's going to give me some enzyme to help digest them and he might have to tweak my diet to limit starches and instead have meats or veggies. Sorry to get too deep into my personal problems, but this is just an example of a hidden problem.

Before going gluten-free, symptoms could come and go depending on gluten intake. It used to be that whenever I'd go out for pizza, I'd get sick that night...now I understand why (pizza is MAJOR gluten). Straying from evidence and theories, I just wanted to let you know that this happened to me....sometimes I'd have great weeks, sometimes weeks where I was constantly sick.......whatever the reason, I had the same experience.

-celiac3270

[deb]

Hey Gretchen,

Actually I have a diagnosis of IBS so far. I don

[Dwight Senne]

Deb,

Ditto to what celiac3270 said - the symptoms do come and go. The only way to know if you have other problems is to go on the diet. Even then, it may take a few months until you really start feeling better on a regular basis.

You didn't mention if you have had an endoscopy with biopsies taken of the small intestine??? If not, and if you are suspecting Celiac, I urge you to urge your gastroenterologist to schedule an endoscopy at the same time they are doing the colonoscopy. I had both done on the same day and it was a piece of cake. The biopsy is still the only absolute method for diagnosing Celiac Disease.

One other thing that doctors often overlook is bacterial overgrowth. There is a simple breath test for this and if it comes back positive, you go on anti-biotics for a week or two. After my Celiac diagnosis, I did fine on the diet for about 2 months, and then right back to some of the same problems. My doctor had me do the breath test, and sure enough! I took the anti-biotics and now I'm fine.

[deb]

Hey Dewey,

No I have not had an endoscopy biopsy. Since my GI thinks I have IBS he did not even suggest one. The polyps showed up after I had a BE and my GI had me do the BE because he said it would reproduce my pain and prove that I have the IBS. Well It was uncomfortable to say the least but in on way did it reproduce any of my symptoms. I just wish I could find a doctor that would say "I don't know what is wrong with you but we will keep trying to find out".

Wouldn't that be refreshing.

So you had better & worse problems after going gluten-free? How did you get the dr's to do both colonoscopy and endoscopy? Thanks for the info. Deb

[judy04]

Hi Deb,

Sorry you are having so much pain. In the beginning I kept a journal

which included everyting I ate, every day. By starting out very carefully

by eating very simple meals I could pinpoint which foods were bothering

me or causing pain. My pain was really severe and the bloating as well.

Through a process of elimination I removed dairy, eggs, soy, and tomatoes

from my diet. After 7 long months I became PAIN FREE. I now can tolerate

egg whites, small amounts of soy and tomatoes. Funny thing I can tolerate

cheddar cheese but not milk. I think the journal would help you a lot..

In this way you may find why your pain comes and goes.

[Guest ~wAvE WeT sAnD~]

Deb,

My worst symptoms (nausea and vomiting) have gone, but the rest (fatigue, "brain fogginess") come and go. Since I've only been gluten-free for four weeks, I guess I've have yet to see the "for best results" portion of the program.

I hope you feel better

Good Luck,

[Dwight Senne]

Hi Deb,

Yes, the symptoms came and went before I started the diet. After going on the diet, within a couple of weeks I started feeling better. About a month or two into the diet, I took a turn for the worse. My doctor gave me the breath test for bacterial overgrowth, and sure enough, I had it! 10 days of anti-biotics later, and I was back to normal. That was about a year ago - have been doing great ever since!

Fortunately, my family doctor had the wisdom to refer me to an excellent gastroenterologist, and he had the wisdom to suggest the endoscopy and colonoscopy! Imagine that - a doctor who is thorough!!! If he suspected Celiac prior to ordering the scopes, he never said it. It was only after the endoscopy that he mentioned it to me. He noticed some inflamation consistent with Celiac and so he took biopsies - which I flunked! He then ordered the Celiac panel blood tests (I know, most people get that first!) - which I flunked! Congratulations, Dewey! You have Celiac disease!

The key here is to not be afraid to see another doctor if you are not satisfied with your current one. There truly are some excellent doctors out there. I think we just tend to think all of them should be excellent and when we find one or two that isn't, I suppose it's easy to discredit the entire lot! Keep searching!

[celiac3270]

Judy,

Really glad to hear that it took seven months and then you were better. From what I had read, it seemed to me that symptoms either left really quickly (0-3 months) or else took at least a year. I'm glad to hear that somebody felt better after 7 months; I hope I do! My new doc. gives me a lot of hope, too.......he seems to be really knowledgable.......thanks.

-celiac3270

[GEF]

I'm in the pre-diet stage and thinking back at the onset of my symptoms, I can honestly say that there has been an "evolution" so-to-speak going on and even points where I was symptom-free (but not for long). First was the diahrrea... pretty much all the time.. .and fatigue... for which I thought was lactose intolerance. A few years later, "d" happened even when I had no lactose, then came the gas and bloating and now I get urgency, cramping, bloating and absolute fatigue all the time now. Some days I feel like I've eaten a pound of sugar's worth of energy, then some days I can barely make it out of bed. I try to think back to what I might have eaten to make me feel so good and energetic, but I just can't pin-point it. It brings me some comfort to know that the symptoms of celiac disease aren't textbook, they're different for everyone and different depending how your sick your body is. Then, we get a breakthrough and that little antibody sticks it's head out and is caught... finally busted!!!

[stargirl]

We live with ourselves every day, we know when we are sick. Our bodies talk to us when we consume gluten. If the diet makes you feel better I don't understand why it is so important to have a doctor make a diagnosis. So many doctors are unfarmiliar with the disease and won't even consider it. I have been gluten free for 8 months and I am feeling a lot better. I still have some of the "phantom" symptoms where I get sick and I'm positive I haven't consumed gluten. It's nice to hear everybody else isn't a 100% better either.

[paulstefano]

YES, YES, YES symptoms can come and go. Read my recent post entitled Ulcerative Colitis vs. Gluten Sensitivity in this section.

Try the Gluten free diet, even for a few weeks. It's easier than you think. Places like Whole Foods carry everything you could imagine made from Gluten Free ingredients. If you feel better, than you know you can help yourself with a gluten-free diet. If not, no harm done, you've just joined the millions of Americans who have tried to diet.

[deb]

Thanks to everone that replyed.

I did an experiment yesterday with food. I ate gluten-free for breakfast & lunch. Had no problems until 1 1/2 hours after eating a peice of cake. The stomach pain started, bloating and gas. I am convienced I have Celiac.

I go to Denver to have my colonoscopy on Tuesday to get those polyps taken care of, so after that I am going to start going gluten-free. I probably will go mostly gluten-free now but I can get some gluten-free foods in Denver, as I live in a very small rural area and it is hard to get things here. I also think I will do the Enterolab testing. I guess it is just human nature to have proof. Plus I would like for my kids to be tested.

Thanks,

Deb

[paulstefano]

There are lots of mail order services available that will send you gluten free foods.