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Newly Diagnosed, Questions
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19 posts in this topic

Hello everyone,

 

Glad to have found the forum.

 

I am 27 years old and have been having stomache pain since April 2014. I was diagnosed with Celiac from blood test on July 3rd, 2014.  I realize I might still need to get a intestinal biopsy but my doctor said first that I needed to go completely gluten-free and take probiotics... (florastor)

 

So the very first week going gluten-free was like heaven. 2 days after going gluten-free I felt great. Stomach felt normal, etc... But after that first week my symptoms seem to come back full force and even worse. It is now July 22 and I am having very few good days. From reading other posts on here I realize this probably isn't a long enough time to determine anything if my gut is healing (I think I am one of the lucky ones because I never had stomach pain or any digestive issues prior to April 2014. I am hoping that means my gut isn't too badly damaged).

Did anyone else have a period of "amazing" right after going gluten-free and then it actually get worse?

 

The Big D and stomach pain are my two biggest things I am dealing with right now.

 

Does sugar/soda effect anyone else? I am really trying to determine what causes me to feel bad, but then again maybe it is too soon and I will just have good and bad days.

I have cut out soda for right now which is very hard since I work late into the night. But maybe that isn't the problem.

 

I have been eating some gluten-free products and a lot salads... I have been 100% gluten-free since July 4th. I am trying to go completely organic but baby steps.

 

I am starting a food journal to try and see if I can determine what causes worse days.

 

Any other advice?

 

Thanks everyone.

Edited by Brian Jackson
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Read the newbie thread and learn about cross contamination.  I wouldn't go out to eat to much until you do some research about the places to go in your area that other people trust. Don't go out to eat on a busy night and think you aren't going to get cc'd.  Try to call ahead and talk to a manager first too.  I just don't go out to eat except for my friend's place.  He takes good care of me.

 

Is seems the first year is the hardest for feeling better, there are ups and downs.  Don't be too hard on yourself, it's difficult at first and mistakes happen.  With food it seems like too much of one thing is always too much.  I have problems if I eat too much sugar, or too many foods that are hard to digest.  Salads are a big one for me.  I also stay away from a lot of processed foods.  There is just too much healing that needs to go on.

 

Make sure you get your thyroid tested and tested for deficiencies.  They seem rather common from malabsorption issues.  Get good follow up care, it makes a difference.   

 

Gluten hides in everything, make ups, lip gloss, shampoos, tooth paste, check every thing that goes in your mouth. If you have a significant other make sure they are brushing their teeth really well if they are eating gluten, my boyfriend has glutened me kissing before.

 

Good Luck. Have any questions ask away, people are awesome on here.

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I'm psychic - let me guess your next question. What, who or where is this "Newbie Thread"? :)

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/#entry913144

Ok.....maybe not psychic .... Probably psychotic?.... Possibly just seen this before? Anyway... welcome to the club!

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Sorry Karen, I would have posted the link but for some reason I can't quote or post links on here.  Been really driving me nuts lol

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Hello everyone,

 

Glad to have found the forum.

 

I am 27 years old and have been having stomache pain since April 2014. I was diagnosed with Celiac from blood test on July 3rd, 2014.  I realize I might still need to get a intestinal biopsy but my doctor said first that I needed to go completely gluten-free and take probiotics... (florastor)

 

So the very first week going gluten-free was like heaven. 2 days after going gluten-free I felt great. Stomach felt normal, etc... But after that first week my symptoms seem to come back full force and even worse. It is now July 22 and I am having very few good days. From reading other posts on here I realize this probably isn't a long enough time to determine anything if my gut is healing (I think I am one of the lucky ones because I never had stomach pain or any digestive issues prior to April 2014. I am hoping that means my gut isn't too badly damaged).

Did anyone else have a period of "amazing" right after going gluten-free and then it actually get worse?

 

The Big D and stomach pain are my two biggest things I am dealing with right now.

 

Does sugar/soda effect anyone else? I am really trying to determine what causes me to feel bad, but then again maybe it is too soon and I will just have good and bad days.

I have cut out soda for right now which is very hard since I work late into the night. But maybe that isn't the problem.

 

I have been eating some gluten-free products and a lot salads... I have been 100% gluten-free since July 4th. I am trying to go completely organic but baby steps.

 

I am starting a food journal to try and see if I can determine what causes worse days.

 

Any other advice?

 

Thanks everyone.

Oh..wait...if you are still testing ( endoscopy) you need to continue to eat gluten. Would be horrible to be gluten-free for 3 months, get an endoscopy and have a lot of healed areas that they biopsy and tell you " no celiac"!

http://www.cureceliacdisease.org/archives/faq/i-self-diagnosed-and-started-a-gluten-free-diet-do-i-have-to-eat-gluten-prior-to-getting-screened-for-celiac-disease

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Hello everyone,

 

Glad to have found the forum.

 

I am 27 years old and have been having stomache pain since April 2014. I was diagnosed with Celiac from blood test on July 3rd, 2014.  I realize I might still need to get a intestinal biopsy but my doctor said first that I needed to go completely gluten-free and take probiotics... (florastor)

 

So the very first week going gluten-free was like heaven. 2 days after going gluten-free I felt great. Stomach felt normal, etc... But after that first week my symptoms seem to come back full force and even worse. It is now July 22 and I am having very few good days. From reading other posts on here I realize this probably isn't a long enough time to determine anything if my gut is healing (I think I am one of the lucky ones because I never had stomach pain or any digestive issues prior to April 2014. I am hoping that means my gut isn't too badly damaged).

Did anyone else have a period of "amazing" right after going gluten-free and then it actually get worse?

 

The Big D and stomach pain are my two biggest things I am dealing with right now.

 

Does sugar/soda effect anyone else? I am really trying to determine what causes me to feel bad, but then again maybe it is too soon and I will just have good and bad days.

I have cut out soda for right now which is very hard since I work late into the night. But maybe that isn't the problem.

 

I have been eating some gluten-free products and a lot salads... I have been 100% gluten-free since July 4th. I am trying to go completely organic but baby steps.

 

I am starting a food journal to try and see if I can determine what causes worse days.

 

Any other advice?

 

Thanks everyone.

I am surprised your doctor told you to go gluten free before your biopsy...my doctor told me the exact opposite. He said the disease needed to be active for accurate results. Good luck!

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OP, if you think that you're going to want to get an endoscopy done, I would schedule one ASAP.

 

After you've been on the gluten free diet for awhile, it usually takes a gluten challenge in order to get accurate results and that's generally the last thing that a newly dx'ed person would want to do, especially if they are improving on the gluten-free diet. 

 

ETA: Looks like kareng and I posted at the same time.

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I am glad you guys caught that, this brain fog is killing me!

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Sorry Karen, I would have posted the link but for some reason I can't quote or post links on here.  Been really driving me nuts lol

Doesn't seem to work in Internet Explorer. I have been told, by high school,and college computer science people that IE is going away & not updating home users?. I try to use safari ( iPad) or Google Chrome when dealing with the forum.

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Thank you, I will try that.

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OP, if you think that you're going to want to get an endoscopy done, I would schedule one ASAP.

 

After you've been on the gluten free diet for awhile, it usually takes a gluten challenge in order to get accurate results and that's generally the last thing that a newly dx'ed person would want to do, especially if they are improving on the gluten-free diet. 

 

ETA: Looks like kareng and I posted at the same time.

  

I am glad you guys caught that, this brain fog is killing me!

1...2..3... jinx! We are all talking at once! :)

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I am surprised your doctor told you to go gluten free before your biopsy...my doctor told me the exact opposite. He said the disease needed to be active for accurate results. Good luck!

Good doctor!

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Thanks everyone. So does everyone recommend I get a biopsy? I realize it is kind of late now. The doctor said from the results of the blood test that it was "very positive" (whatever that means) for celiac and didn't need one. I am going gluten-free now no matter what... I have done enough reading to know how much healthier it is and even my parents have started eating gluten-free after hearing about the trouble I have been having.

 

And that one week of amazing that I had, I felt like a whole new person... I think a big problem I have is I am not eating enough fresh fruits/veggies. I need to work harder on that.

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Also, some people have mentioned withdrawal symptoms after going gluten-free... I am wondering maybe that is part of why I felt really good and then got worse?

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It is up to you whether or not to get a biopsy.

 

Some people on here have done them a month or two after going gluten free and got positives--after all the damage doesn't heal overnight. But definitely the sooner the better!

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The "gold standard" for an official diagnosis is positive blood work and a positive biopsy.  It seems to be the consensus here that positive blood work is Celiac hands down and maybe your doctor feels the same. There are others that won't give you the time of day if you are not "biopsy positive"  Is he a GI Celiac specialist?  I guess if soda were giving me stomach pains, I would consider the endoscope for both the biopsy and just to make sure you don't have a hiatal hernia or ulcers but it would also depend on what your insurance is like because they are spendy.

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You said you eat salads? I know I love raw veggies but they are very hard to digest, also the dressings you are using might have a gluteny ingredient. and cross contamination.. is someone picking crutons off that salad?

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Hello everyone,

 

Glad to have found the forum.

 

I am 27 years old and have been having stomache pain since April 2014. I was diagnosed with Celiac from blood test on July 3rd, 2014.  I realize I might still need to get a intestinal biopsy but my doctor said first that I needed to go completely gluten-free and take probiotics... (florastor)

 

So the very first week going gluten-free was like heaven. 2 days after going gluten-free I felt great. Stomach felt normal, etc... But after that first week my symptoms seem to come back full force and even worse. It is now July 22 and I am having very few good days. From reading other posts on here I realize this probably isn't a long enough time to determine anything if my gut is healing (I think I am one of the lucky ones because I never had stomach pain or any digestive issues prior to April 2014. I am hoping that means my gut isn't too badly damaged).

Did anyone else have a period of "amazing" right after going gluten-free and then it actually get worse?

 

The Big D and stomach pain are my two biggest things I am dealing with right now.

 

Does sugar/soda effect anyone else? I am really trying to determine what causes me to feel bad, but then again maybe it is too soon and I will just have good and bad days.

I have cut out soda for right now which is very hard since I work late into the night. But maybe that isn't the problem.

 

I have been eating some gluten-free products and a lot salads... I have been 100% gluten-free since July 4th. I am trying to go completely organic but baby steps.

 

I am starting a food journal to try and see if I can determine what causes worse days.

 

Any other advice?

 

Thanks everyone.

I did have a time that I felt like things were getting better. April was great! Since then I've had lots of issues though. I do keep a food journal to try to pin point what bothers my system. Also, I still can't do raw veggies without issues and I'm 6 months in.
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Thanks everyone for taking the time to comment, I do appreciate it. I don't think I am going to get a biopsy because of price right now... due to the fact that the doctor said I tested postiive for celiac with the blood test and that I can tell it is food that is affecting me.

 

I had a good day today!! No Big D for the first time in probably a week and as I type this I am completely pain free in the stomache :)

 

So you know what I'm gonna do? I'm literally gonna eat the same thing every day for a while lol. I want to make sure I am healing for a while before trying alternative things.

 

I guess it must be different for everyone but today all I ate was fresh chicken, salad, cucumbers, tomatoes, strawberries, blueberries, 2 gluten-free protein bars, a turkey sandwich with canyone bakehouse gluten-free bread + cheese, maynoise, etc....

I also didn't have any soda or any sugar drinks.... I drank straight water all day. And actually I feel pretty energetic still.

 

Cross your fingers for me. Will see how it goes over the next couple days. Probably will wait a week until I try putting anything else into my mouth :)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
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