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Still Sick

NateJ

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NateJ Contributor
NateJ
Posted

Today is gluten free day #14 and i'm getting worse. I cut it out completely 2 weeks ago and had some good days and bad, but yesterday and today have been terrible. I started back to work yesterday after 3 weeks off and my symptoms are not improving at all. Still have 'D', constant stomach pain. tender to touch and the pressure bloating feeling every day. I tried keeping a food journal and writing down my symptoms but i can't figure out

whats causing it. basically all food is making me sick. I don't think i can wait much longer for these stupid scopes that i have a feeling aren't going to show anything. My wife wants me to go the hospital, but i know they are just going to lay me in a bed and not do anything.

end of rant

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txplowgirl Enthusiast
txplowgirl
Posted

Hi Nate, If you plan on getting tests i'm sorry to say you have to be on gluten full time for the tests to have a chance being positive.

2 weeks you are still in the beginning stages of healing. Sounds like you are still suffering withdrawals. Maybe you should go to the dr's to rule out other problems.

Have you eliminated dairy and soy? Are you eating just a whole foods diet? For some in the begining some people can't handle gluten free processed foods. A lot of us have problem with oats due to cross contamination.

Are you still using your cooking pans, toaster, wooden spoons, and collander? Again, cross contamination. Also, shampoos, lotions?

I hope you start to feel better but I think you need to go to the dr and have other tests run. I don't want to scare you but you could have something very life threatening. Please get yourself checked.

Sending prayers your way.

Txplowgirl

salexander421 Enthusiast
salexander421
Posted

What prompted you to go gluten free? Have you been diagnosed celiac/gluten intolerant or are you just trying to see if gluten is what's causing the problem?

If gluten is what's causing your symptoms I would say you're probably getting some gluten somewhere, either hidden or cross contamination. It's my experience that as you take gluten out and your body tries to heal you become more sensitive to even small amounts of gluten.

If you can tell us what you typically eat maybe we can help you find the source of where the gluten is coming from. And, like previous poster said, I would try at least cutting out dairy for a little while and maybe even soy. A lot of times people with gluten intolerance can handle dairy after they have healed completely. Also, any condiments that have been previously used with gluten products I would throw out (or give away to family members :P) and replace them, even a small crumb left behind in the mayonnaise jar can trigger a reaction.

Some people will also have to eliminate all grains in the beginning until they heal but I would take it one step at a time. Hope this helps!

NateJ Contributor
NateJ
Posted
  • Author

I had a scope done on Dec 28 and for whatever reason the GI told me they didn't find anything and said it was probably IBS. But she also told me IBS would never get worse. I've always had stomach problems since i was a kid, but since I got the flu last fall I've never recovered. I've been getting progressivley worse to the point of not leaving my house for fear of accidents. I have sharp pains in my stomach that are starting to reach into my back now.

I went to see a new GI 2 weeks ago and took my scope results with me. He said there was some 'marker' that shows Celiac, but didn't want to diagnose me because he did not run the test himself. So with my other symptoms he wants to run two new scopes on the 30th, but meanwhile my stomach is killing me. It feels like something eating away at my insides. Constant pain. The only thing that gives me any relief is not eating at all. But I know thats not an option.

My diet over the last 2 weeks has been no gluten, minimal dairy if any. I switch to Lactaid milk, no cheese,no bread, or any gluten and no oats. I can say there has been little to no difference in my symptoms. And yesterday was a nightmare. I ate grilled chicken for dinner the night before and had a LaraBar for breakfast with Ensure and was on the toilet and having really bad pains. So I have not eaten since yesterday morning. nothing but water and feel slightly better. But I know I'll have to eat at some point......

shopgirl Contributor
shopgirl
Posted

Larabars can be tough to digest for anyone

salexander421 Enthusiast
salexander421
Posted

Is the new GI doing a scope to look for celiac? If so you would want to be still consuming gluten for an accurate result. Have you had any bloodwork for celiac, if so was it positive?

Going gluten free in the beginning, it is best if you stick to a whole foods diet. Meats, fresh fruits and vegetables, rice, dairy (if you can tolerate). There's a pretty big learning curve to eating gluten free, it can take a little while to realize all the places gluten can hide. I would even stay away from seasonings at first and just use sea salt and pepper for things. Gluten can be in cooking spray so I would use regular olive oil to coat pots and pans. Be super bland in the beginning and just know that as you learn more about the way of eating your food choices will become broader over time. You may even want to ditch the chicken for a little while and go for something easier to digest, lamb is one of the easiest to digest meats.

Hope this is helping!

salexander421 Enthusiast
salexander421
Posted

Oh yeah, my girls couldn't tolerate Lactaid either. For some people it's actually the milk protein that you have problems with so just cutting out the lactose doesn't help. There's some really good milk alternatives out there. Almond milk, hemp milk, coconut milk. We use blue diamond almond milk and really like it, it has the best taste to me :)

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zus888 Contributor
zus888
Posted

Yeah, I'd steer clear of the milk products and go with easy to digest foods for a while: apple sauce, ripe bananas, rice, etc.

Sounds to me like you might have ulcerative colitis or crohns. Have you had a colonoscopy?

Jatango Rookie
Jatango
Posted

This may have already been covered, but have you had a bacterial culture done on your stool? As a microbiology technician, it's always the first thing on my mind. Were you on a ton of antibiotics when you had the flu? Have you been tested for clostridium difficile?

Many times it's the gluten, but sometimes it isn't. :)

GFinDC Veteran
GFinDC
Posted

My diet over the last 2 weeks has been no gluten, minimal dairy if any. I switch to Lactaid milk, no cheese,no bread, or any gluten and no oats. I can say there has been little to no difference in my symptoms. And yesterday was a nightmare. I ate grilled chicken for dinner the night before and had a LaraBar for breakfast with Ensure and was on the toilet and having really bad pains. So I have not eaten since yesterday morning. nothing but water and feel slightly better. But I know I'll have to eat at some point......

Hmm, did you grill the chicken on a grill that was used for gluten containing items earlier? Soem people put a piece of aluminum foil on the grill first as a precaution. Not a bad idea.

You only just started this diet. You will learn to do it better as time goes on. One of the best ways to start is stop eating all processed foods for the first couple months. Cook all your food at home from scratch using whole ingredients. Forget the gluten-free cookies and breads and etc. Use limited spices and use single ingredient spices not blends.

If I were you I'd stop all dairy and soy also. You want to simplify your diet so your GI tract has less things to irritate it. Also by simplifying your diet you can more easily tell what is bothering you. If you eat 25 different ingredients in a day there is no easy way to tell which is causing you a problem. If you eat 5 ingredients a day it is much simpler. Simpler is better.

NateJ Contributor
NateJ
Posted
  • Author

well, I probably haven't been as strict as what you all are saying. Its hard starting off cause so many things I love are gluten.

I just got back from the hospital after an overnight stay. apparently my Dr. thought it a good idea to just get admitted to get all the tests done with.

so i had blood tests, which were good for white count, etc.

stool test which hasn't come back yet for bacteria, but no blood was found

and both scopes with multiple random biopsies.

The GI did say that the inside of my stomach was 'red' and inflammed but he didn't see anything

surgically wrong so I guess I just have to wait for the biopsies to come back.

The GI suggested i stay off glutten for now and gave me some new medicines to try to just help with the pain.

Thanks for the info on the Lara Bars. I didn't really think that nuts would be hard to digest, but that makes sense. I was just looking for something to eat that had some protien and would give me some energy.

I guess I really need help from a dietician. It seems every item i come up with has some bad effect or

ends up hurting me.

IrishHeart Veteran
IrishHeart
Posted

Nuts are really difficult for an irritated tract to digest and ENSURE has soy in it---that is a major problem for me. Try to stick to plain foods. So sorry you are in pain, I truly understand. Hope you feel better soon.

NateJ Contributor
NateJ
Posted
  • Author

I thought soy was safe? i would curse but this is a family place.

oh well. while we are on the subject whats everyones opinion of oats? I've heard they are safe

and then read somewhere else they are not......

salexander421 Enthusiast
salexander421
Posted

I thought soy was safe? i would curse but this is a family place.

oh well. while we are on the subject whats everyones opinion of oats? I've heard they are safe

and then read somewhere else they are not......

If you have a gluten intolerance you'll want to only consume certified gluten free oats as most oats are contaminated with gluten. That being said there are many people with gluten sensitivity that can't tolerate even the gluten free ones. I would probably suggest staying away from all oats until you start to heal, then maybe you can try them later on.

IrishHeart Veteran
IrishHeart
Posted

Soy protein is difficult for some people, not all. I only suggested it.It may not be an issue for you.

If you could see a gluten-savvy nutritionist, that might not be a bad idea.

Until your irritated gut heals, you may be sensitive to many things (unfortunately, like the rest of us) BUT in time, you will feel better.

NateJ Contributor
NateJ
Posted
  • Author

thats encouraging. I was relying on the Ensure though to make me gain some weight. Any suggestions on another

health shake? one that doesn't have soy or glutten in it? I have an appt. for a follow up with my GI on April

8th but he said if my biopsy results come back sooner i could call. I guess i'll wait for that then go

make an appt. with a dietician.

ravenwoodglass Mentor
ravenwoodglass
Posted

I thought soy was safe? i would curse but this is a family place.

oh well. while we are on the subject whats everyones opinion of oats? I've heard they are safe

and then read somewhere else they are not......

I would avoid oats for now. After you have healed a bit then go ahead and try the certified gluten free oats, eat them every day for a week and watch for a reaction. Some of us are fine with soy but some of us aren't. In the beginning it is a good idea to avoid soy and dairy as those are a couple of the things most likely to be an issue with us. After you have healed then add them back in one at a time, same as for the oats, and watch for a reaction.

Right now you need to go with whole foods as much as possible. It can take some time to heal and make sure you check all meds and supplements for gluten if you haven't already.

NateJ Contributor
NateJ
Posted
  • Author

thanks for the advice. I will post more once my biopsy results come back. cross your fingers for me!

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