Back On Gluten

[jknnej]

I can't wait until March 15. I have to eat my old normal diet until then. My endoscopy was to be Feb 1 but since I've been gluten-free I have to eat "regular" again until the test. What a bummer. I am miserable at the thought of feeling bad for the next 6 weeks, but the doc says so, so I will:(

Any tips on how to control the tummy aches?

[celiac3270]

This is what helps me--

If you have nausea, peppermints help (I use Altoids, but any gluten-free ones will do). For stomach pains/aches, I find that a heating pad helps soooo much--and the curled up, fetal position I always naturally take when I have celiac-related stomach aches. Of course, wear loose pants, etc.

[MySuicidalTurtle]

That is awful. I don't think I could do it. . .even for the test.

[KaitiUSA]

Try taking enzymes when you eat....ginger tea and peppermints are good. Probiotics are good as well. I hope all goes well and hope you can feel good again soon good luck!

[jknnej]

Thanks. I will keep posting on this as a way to vent my problems of the next 6 weeks! I really appreciate your support.

I had Mac n cheese tonight..it didn't even taste good to me to eat real pasta again, oddly enough. So far it's three hours later and no stomach ache but my hands turned red and I have a slight headache.

Oh boy, six weeks and counting!! I couldn't do it without you guys!!!!

Jennifer

[mela14]

i don't think i could do it......i just get so sick from eating it i would be in bed the entire time feeling like i swallowed poison.

i would keep ckeing with them to see if there are any cancellations or any way that they can take you sooner.

good luck to you!

[Guest Leidenschaft]

Hi Mel, likely Jennifer's date got bumped because she has been gluten-free and they need her to eat gluten for a certain amount of time to create a "normal" environment to test.

Jennifer, since you've got to have gluten, could you please have the following items for me... Angel Food Cake, best served with strawberries and whip cream, Yorkshire Pudding, and a cold Canadian Beer! ?

Thanks in advance! By the way, I'm not being insensitive here, just trying to make a little light on a tough situation! Hang in there!

[whimsygirl]

Hi, also a newby, and just in case you're not a very big peppermint person, I thought I'de let you know the cinnamon Altoid gum was great for me. As soon as something made me nauseous I'd have to have one. I had soooo many containers of it just to not run out it looked like I was an addict or something. And I have to say my mind misses a lot of the "old" foods and if I try to eat them they don't taste good to me either. I think our minds are harder to retrain than our stomachs.

Anyway good luck,

Whimsygirl

[celiac3270]

Hi, also a newby, and just in case you're not a very big peppermint person, I thought I'de let you know the cinnamon Altoid gum was great for me. As soon as something made me nauseous I'd have to have one. I had soooo many containers of it just to not run out it looked like I was an addict or something. And I have to say my mind misses a lot of the "old" foods and if I try to eat them they don't taste good to me either. I think our minds are harder to retrain than our stomachs.

Anyway good luck,

Whimsygirl

Wow...are you sure that Altoid gum is gluten-free? Have you called the company? Cause I thought that maybe 4-7 months ago, there was a post about gum. Someone asked if it was gluten-free and someone else said it wasn't. If my memory is incorrect, I apologize for scaring you, but I just wanted to alert you to that in case you were accidentally consuming gluten.

[Guest Viola]

Hello Jennifer; that really is a tough one. I can't imagine going back on gluten foods, although my mind keeps saying that I would love to have fresh crusty rolls with soup and good old apple pie. My stomach ties itself in knots if I actually think about eating them. Come to think of it, after all these years I'm not sure I remember how they taste anymore.

I think the problem with some gums is that some of them are made with 'oat gum' I do believe that there are gluten free ones out there. I'm not a gum person so don't really know for sure. A word of caution for some of you who are. If you have acid reflux disease as well as Celiac. The gum chewing will make the acid worse.

[jknnej]

Hi all,

Thanks for your great comments! They are helping me! I confess, today I have not yet had gluten. I couldn't do it AGAIN after last night. But it's OK...since my test is not until March 15 I have a little leway (sp?). The doc said when I get to two to three weeks before I have to be really serious and eat it all day. I'm going to start that probably like mid feb. Now i'm trying to slowly wean myself back. I'll probably eat graham crackers or an English muffin for a snack tonight.

Tammy, I will have your strawberry shortcake with whip cream. Not the beer, though. I'll have my hubby drink that for you; he loves beer...lol.

[cdford]

My endocrinologist had the best advice...tell the gastro doctor to go jump. If your blood work was clear cut and you get better going gluten-free only to have symptoms when you eat gluten, the only reason the endocrinologist could think of to put me through it again was stubborness or money. He kept shaking his head and muttering something about that hippocratic oath they had taken. I won't repeat it here since it made me blush. I wish now that I had taken his advice and refused. It took months to get over that three weeks.

Interestingly, I found that the stuff I expected to taste so good felt funny in my mouth and didn't taste right any more. The white flour stuff like pizza dough just coated my mouth and felt yucky. It had the strangest consistency. Between that and the consequences of eating it, it just was not worth it.

Wishing I had had the guts to refuse to deliberately harm myself...

[tarnalberry]

Good luck making it through this time. I hope it passes as quickly as possible!

BTW - the cinnamon altoids is gluten-free, but the peppermint is not. the company will clearly list gluten containing ingredients on the packaging, and the peppermint flavor uses wheat starch that the cinnamon ones don't.

[celiac3270]

The gum, you mean, right? you're not referring to the actual mints.

[jknnej]

Well, the thing is this: only ONE of the three blood tests came back positive. My doctor said that means I only have a 50% chance of having it. He said if all my blood tests came back abnormal that would mean I have a 97% chance...but right now it's only 50/50.

He said he realizes that I can eat gluten-free if I like it and that's not a problem but he said, "Do you really want to always worry about cross contamination when you eat/travel to the point that someone who actually has the disease has to worry if you might not even have it? I realized he is probalby right. It is a HUGE pain to eat out/travel. You can order gluten-free food but there's no guarantee. If I don' t have celiac disease I can eat out /travel without worrying. If I accidentally gluten myself, I might not feel well, but it won't damage me if I don't have celiac disease.

That's my main concern; what do you think? I will eat gluten-free no matter what the diagnosis, but if I accidentally gluten myself I wouldn't have to worry if I don't have celiac disease. plus, this is the rest of my life we're talking about. If one day I really want to cheat and I DO have celiac disease, I won't do it. If I don't, I may cheat once in a while. But I agree; foods don't taste the same. That regular pasta I had the other night was gross to me and I used to love it. So I may not cheat anyhow.

Help! So confused....

Maybe it's better to be sick for a couple of weeks and be sure for the rest of my life......

[celiac3270]

It's completely about personal opinion. I think many would rather suffer for a few weeks and know for sure. Also, if you test negative for celiac and still have problems with gluten, you might be prompted to have other tests done that would result in problems with wheat, rye, and barley.

I think that because it's so life-altering and since you've already started eating gluten, I'd just finish it out so you know for sure, but I'm not qualified to make that decision for you. It should be based entirely on how you feel. I, personally, just wouldn't want to doubt the diagnosis throughout my life.

[Rikki Tikki]

I can only say from my own experience, but I think I would eat what the doctor said and go ahead and have the test. That way you will know for sure if you have it or not.

I remember about ten years before I was actually diagnosed with celiac disease a doctor had run a blood test and said well, the blood work shows a rare disease called celiac, but I'm sure you don't have it. He didn't check further and if he had maybe I wouldn't of suffered all those years. Maybe it wouldn't of damaged my body so much.

Just my thoughts, I would eat, and have "a big juicy cheeseburger with a bun for me," and then have the test. It's only a couple of weeks and then you will know. Try to hang in there, it will get better!

[KaitiUSA]

I would get the test done to see if you have it for sure. If you have it you then know you absolutely can't have certain things. If you don't have it then you may still want to stay away from it if they make you feel bad.. but if you have something then it doesn't matter as much as it would with Celiac. The big thing is you don't want something literally tearing your intestine to pieces. Just try to control the nausea and tummy aches as much as possible. Hang in there and good luck:)

[whimsygirl]

You mean you have had three tests and only ONE came back positive?! Okay, someone give me some thoughts here on this because I just got my first test result back today for the antibodies and it said they were nondetectible. I'm really frustrated about that because since I have been going gluten-free I have been starting to feel better. I realize this is only one test but I have a real problem thinking I sound like a hypocondriac. (like I won't go to the Dr. til I'm REALLY sick) And I'm not getting much support with this being the idea of what is wrong with me. My family thinks it's very odd to just SUDDENLY have such an extreme food allergy. Even though I've told them that it happens all the time. I keep having to remind them what I can't eat and they seem to just look at me like I'm really taking this a bit far.... you know to not have a Dr. said yes this is what it is.

[KaitiUSA]

Whimsygirl-Celiac is not an allergy it's an intolerance. If you have it , it has been with you for a while but you may have not realized it. Stressful events or things such as mono etc. can trigger the Celiac . When I was growing up and could eat anything. When I had mono, a few months later I was diagnosed with Celiac. My blood tests came back mixed. I had positives and negatives but they were able to tell it was in fact Celiac. Blood tests can come back negative when you really do in fact have Celiac. So growing up you could have had no symptoms but still could have had the effects of Celiac damaging you if you have it. If you know you feel better on the gluten-free diet stay that way. Do what makes your body feel better. Listen to your body.

I had to switch doctors 3 times until I found a really good doctor who then was able to pinpoint Celiac. Celiac is very underdiagnosed.

If everything you do(biopsies and blood tests) turns out negative you might want to consider allergy testing. You could have an allergy instead of Celiac.

Maybe if you tell your family what the consequences(increased chances of lupus, lymphoma, etc) of not following the gluten-free diet for a Celiac can be they would understand a bit more.

I had 2 blood tests done but my GI doctor also had me get a Prometheus lab test done(the 3rd test). Supposedly they are the only lab that tests for certain Celiac things. The only problem about this was about half was covered by insurance and we had to pay like 600 dollars. It tested for many things associate with celiac. Surprisingly some of the things they tested for turned out negative but the new thing they also test for along with other positive things was able to give me a diagnosis.

Good luck with everything and if I can help you in any way let me know

[judy05]

I had one positive (IGA) and genes were negative for celiac.

My Dr wanted me to go back on gluten, to prove a point,

and I tried but I get too sick. Same thing with dairy. My

intestines weren't damaged and biopsy was NEG but the

neurological symptoms were worse than the GI and I am

not going through that again, not for him, not for anyone.

[cdford]

The only one who can make that decision for you is you. All the rest of us can do is encourage you and share our thoughts.

It sounds as though you are doubting yourself enough to want to be absolutely certain. If you think you will second guess yourself for the next few months or years, go for the challenge. Some of the rest of us react so badly that we just cannot imagine choosing to do that. But you know what? That is our lives, not yours. You think it through and make the very best decision for your life, not ours.

Hopefully you will get a good answer soon and can put all of this worry behind you one way or the other.

[luvs2eat]

My doc said the same thing as yours did, cdford... he told me unequivocally that my blood work showed celiac disease and that I should immediately go gluten-free, which I did. He said that if I didn't see improvement, then, and only then, would he do an endoscopy. I was a gluten-free fanatic... and it still took a year for my system to get happy again.

[jknnej]

Kaiti,

Tell me more about this Prometheus test. Do you have to be eating gluten to test positive? I really don't think I can do this endoscopy. I just can't bear the thought of going back to gluten. Really, only people who've had continuous stomach aches for years like some of us can possibly understand how traumatic it is to eat stuff that makes you sick for 3 whole weeks. And don't even get me started on the recovery time! And all for what? The biospy could still come back negative....oh I just don't think I can do it.

I have been feeling SO much better since I went gluten-free. I have fibromyalgia-like symptoms occurring still, but you know what? They PALE in comparison to the stomach aches I used to have. I can deal with fibro...I don't think I can deal with eating gluten!

I hate to be such a baby but I just can't see how I'm supposted to eat it for 3 whole weeks......

[KaitiUSA]

jknnej-yes I think you have to be on gluten in order for the test to come back positive. My GI doctor is the one who ordered this test. If you go to Prometheuslabs.com and go to products and services...then go to diagnistic tools...the click Celiac disease serology. It will tell you what all it tests for. The lab is located in CA. I was told to keep eating gluten the week I was taking it. They have a # as well it is 888-423-5227.

Along with the celiac disease serology I had other Celiac determining tests done.

My GI doctor said it is a very good lab and are very knowledgable in celiac disease. My GI doctor is also very knowledgable in celiac disease which is a shock because I had 3 previous doctors that knew nothing about it. He told me that this lab is the only one that will test for certain things in celiac disease.

I know what it feels like to be on gluten:( I'm sorry you are going through this more. If I can be of any help let me know. good luck