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Blood Test Negative But Off 2/3 Weeks Prior

wow89

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wow89 Rookie
wow89
Posted

So my blood tests came back negative, everything checks out except cortisol was like a wee bit high. My B12 was actually a little high as I have been supplementing it with sublingual. However went gluten free and felt AWESOME! So just decided that was it. However, last night I felt a bit "glutened" today the same. Trying to figure out where I got it, if it all... if not I need to have adrenal glands checked I guess. Yesterday I had soup (that i made with beef broth swanson's in abox not organic or low sodium but didn't say contains wheat, and tomato paste.) a wendy's chili and baked potato & sweet tea, roast (with beef broth) carrots, green beans apple sauce (mott's cinnamon, not the natural or organic, mini M&M's and some cranberries...also have a cold and have been using puff's plus with lotion. Any ideas where the gluten came in? I'm missing an ingredient I think or else it is inded NOT celiac.

On my blood test my TTG was like +2 and weak positive was 4.

My next question is should I gluten up for a months and take the test again?

And last question: anyone ever read about adrenal fatigue (drs may not recognize it as it could be BS)? They say gluten bothers you but it's not celiac. Just wondering Open Original Shared Link

Thanks for your help!

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wow89 Rookie
wow89
Posted
  • Author

Oh - i also ate some hagan daz vanilla ice cream with hershey's choclate syrup and smucker strawberry squeeze jelly, some kool aid, eggs and sausage...

a lot of these things have natural flavors... ????

thanks again for the help

shopgirl Contributor
shopgirl
Posted

You ate all those things

ravenwoodglass Mentor
ravenwoodglass
Posted

It is possible that the chili was CC'd. I used to work for a place that made chili and it wasn't unusual to catch someone dipping a cracker into it. Gross I know and strictly against the rules but some people think rules are for everyone but them.

You mention looking for 'wheat' on labels be sure you are looking for barley and malt on them also.

The advice to go with more whole foods is a good one and keep in mind that gluten reactions can be delayed so sometimes it will be something you ate a couple days ago that got you.

If you felt great and all your symptoms resolved on the diet you should stick with it. If you do want to challenge and test then you would need to eat gluten daily for about 2 to 3 months for the best chance of an accurate test. Even then you could have a false negative.

wow89 Rookie
wow89
Posted
  • Author

Lol! :D Okay I now see the error of my ways... ;) I have two little ones and it's hard ya know... but I'm new to it all. (I do eat a lot - I have mini meals) I did, I felt really really good for a bout a week/half (even during my period sorry tmi) but now that it's over I felt last night glutened and this a.m. but feel a bit better this p.m.

So I shouldn't bother with another blood test just go with how I feel, which is what i think I will do. I just hate that i dont' have a gastrodoctor or any doctor to tell me what to eat or what to do or anything... I bought gluten-free diet book, but that's the only books I have and then I read I coudlhave other autoimmune things or vitamin defecincies... I'm sorry I just hate not knowing what to do... I guess just eat better and call it good huh?

Did anyone ever hear of that adrenal fatigue thing????

Sorry I'm just at a loss... :(

shopgirl Contributor
shopgirl
Posted

Lol! :D Okay I now see the error of my ways... ;) I have two little ones and it's hard ya know... but I'm new to it all. (I do eat a lot - I have mini meals) I did, I felt really really good for a bout a week/half (even during my period sorry tmi) but now that it's over I felt last night glutened and this a.m. but feel a bit better this p.m.

Aw, I wasn't trying to make you feel bad. :) There's nothing wrong with a lot mini meals throughout the day. But I think you'll find things will go a lot more smoothly if you try to keep your food as simple as possible. You don't have to eat like a monk but remember that Celiacs have to heal from intestinal damage and you're really doing your body a big favor if the foods your intestines have to process while they're healing, are simple, whole ones and not more difficult things.

A lot of us have to learn the hard way that we need to keep it as simple as possible in the early going.

ravenwoodglass Mentor
ravenwoodglass
Posted

Lol! :D Okay I now see the error of my ways... ;) I have two little ones and it's hard ya know... but I'm new to it all. (I do eat a lot - I have mini meals) I did, I felt really really good for a bout a week/half (even during my period sorry tmi) but now that it's over I felt last night glutened and this a.m. but feel a bit better this p.m.

So I shouldn't bother with another blood test just go with how I feel, which is what i think I will do. I just hate that i dont' have a gastrodoctor or any doctor to tell me what to eat or what to do or anything... I bought gluten-free diet book, but that's the only books I have and then I read I coudlhave other autoimmune things or vitamin defecincies... I'm sorry I just hate not knowing what to do... I guess just eat better and call it good huh?

Did anyone ever hear of that adrenal fatigue thing????

Sorry I'm just at a loss... :(

Yea just go with a less processed diet for a bit. You can learn a lot right here. Do check out the recipe sections as a lot of folks have some real good ones.

Don't worry about eating a lot. There is nothing wrong with mini-meals and many of us are constantly hungrey at first. It is almost like the body is going 'nutrients finally give me more more more' that effect will level off.

Just grab something you know is safe and enjoy.

Your regular doctor can check your nutrient levels. Most will if you ask. It isn't going to hurt to take a good for sure gluten-free mega vitamin. Just be aware that you need to read all the ingredients as some will say gluten free and still have wheat and barley grass. You don't want those. If you are over tired try taking a Stess level B and C and a sublingual B12. That may help.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Lol! :D Okay I now see the error of my ways... ;) I have two little ones and it's hard ya know... but I'm new to it all. (I do eat a lot - I have mini meals) I did, I felt really really good for a bout a week/half (even during my period sorry tmi) but now that it's over I felt last night glutened and this a.m. but feel a bit better this p.m.

So I shouldn't bother with another blood test just go with how I feel, which is what i think I will do. I just hate that i dont' have a gastrodoctor or any doctor to tell me what to eat or what to do or anything... I bought gluten-free diet book, but that's the only books I have and then I read I coudlhave other autoimmune things or vitamin defecincies... I'm sorry I just hate not knowing what to do... I guess just eat better and call it good huh?

Did anyone ever hear of that adrenal fatigue thing????

Sorry I'm just at a loss... :(

Yea just go with a less processed diet for a bit. You can learn a lot right here. Do check out the recipe sections as a lot of folks have some real good ones.

Don't worry about eating a lot. There is nothing wrong with mini-meals and many of us are constantly hungrey at first. It is almost like the body is going 'nutrients finally give me more more more' that effect will level off.

Just grab something you know is safe and enjoy.

Your regular doctor can check your nutrient levels. Most will if you ask. It isn't going to hurt to take a good for sure gluten-free mega vitamin. Just be aware that you need to read all the ingredients as some will say gluten free and still have wheat and barley grass. You don't want those. If you are over tired try taking a Stess level B and C and a sublingual B12. That may help.

wow89 Rookie
wow89
Posted
  • Author

Thanks for the help - should I worry that I have no diagnosis? Will this cause issues later on? I've been reading about thyroid and seem to have some of those symtoms but tests came back okay too. Just so frustrated! Today I feel better (not like I've just been glutened)

So what is the challenge? Off for 3 months and then eat it?

Do I need a gastro docotr for this?

I just can't seem to get medical help as blood tests are always "fine" which is good but still...

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the help - should I worry that I have no diagnosis? Will this cause issues later on? I've been reading about thyroid and seem to have some of those symtoms but tests came back okay too. Just so frustrated! Today I feel better (not like I've just been glutened)

So what is the challenge? Off for 3 months and then eat it?

Do I need a gastro docotr for this?

I just can't seem to get medical help as blood tests are always "fine" which is good but still...

One challenge is when you have been gluten free or gluten light and you want testing done. In that challenge you have to eat gluten for 2 to 3 months to redamage yourself to get the best chance for an accurate test. There is still a risk of a false negative. People do this if they have been gluten free or gluten light and want a doctor's diagnosis.

Another form of challenge is to avoid gluten until you have been feeling better for a couple weeks and then eat it daily, 3 times a day, for a week or until symptoms return.

Whether you need a formal diagnosis or not is a decision only you can make. Some are able to stay strict with the diet when their body makes it clear that it doesn't want gluten but others may need an official diagnosis.

Some doctors will be willing to do vitamin and mineral level tests and possibly tests for bone density without an official diagnosis.

The only real treatment for celiac or gluten intolerance is the diet so many are comfortable being 'self diagnosed'.

wow89 Rookie
wow89
Posted
  • Author

Awesome info, thank you! I still have a little tingling in my feet,and a bit of palpitation am taking a stress complex and didn't know that folate increases B 12 level readings so that may explain why my test was high when it was previously low. I ate some gluten (my roast was shot up with a solutionI think was the culprit) and I was in the bathroom several times as well as jittery nervous etc... I feel tons better without the gluten. I just wondered if I needed a dr for more guidance, but it sounds like they dont' know what they are doing anyway so I might as well just go with it. :)

So my symptoms were/are:

jittery

palpitations

anxious/anxiety

diarhea with no sense/prediction of when it was gonna happen (oh for about 11 years)

stomach pain/cramping

diagnosed w reflux and put on nexium for years - still had D - D got better when I started probiotic and natural digestive enzyme/acid controller

pain under rib/below ribs

when i ate bread my heartrate accelerated

tired/short of breath with slight exertion

I have three times in my life that I (can remember where) I was BAD sick vomit, d, virus type that when I 'recovered from bed', i still had all these symptoms.

I think this sounds like classic gluten issues form what I've read. I am offically diagnosing myself. if anyone thinks I am right/wrong please advise. ;)

ravenwoodglass Mentor
ravenwoodglass
Posted

Awesome info, thank you! I still have a little tingling in my feet,and a bit of palpitation am taking a stress complex and didn't know that folate increases B 12 level readings so that may explain why my test was high when it was previously low. I ate some gluten (my roast was shot up with a solutionI think was the culprit) and I was in the bathroom several times as well as jittery nervous etc... I feel tons better without the gluten. I just wondered if I needed a dr for more guidance, but it sounds like they dont' know what they are doing anyway so I might as well just go with it. :)

So my symptoms were/are:

jittery

palpitations

anxious/anxiety

diarhea with no sense/prediction of when it was gonna happen (oh for about 11 years)

stomach pain/cramping

diagnosed w reflux and put on nexium for years - still had D - D got better when I started probiotic and natural digestive enzyme/acid controller

pain under rib/below ribs

when i ate bread my heartrate accelerated

tired/short of breath with slight exertion

I have three times in my life that I (can remember where) I was BAD sick vomit, d, virus type that when I 'recovered from bed', i still had all these symptoms.

I think this sounds like classic gluten issues form what I've read. I am offically diagnosing myself. if anyone thinks I am right/wrong please advise. ;)

For what it is worth I think your doing the right thing.

I can especially identify with the D with no sense of when it would happen. That was me for years and I often didn't even have pain with it. It got to the point where I didn't even want to eat if I had to go anywhere for the next couple hours. Eventually I did get to the point where the D was very painful, like pass out on the john painful but that didn't happen until the last 5 years or so before diagnosis.

I do hope things get better for you soon. You may want to avoid or be very careful with dairy and soy at first. They are the most common other intolerances we have. Many of us can add dairy back in after we have fully healed.

wow89 Rookie
wow89
Posted
  • Author

Thank you so much and yes it's worth a lot! -- I think/hope I'm on the right track.

Oh YES --- The reason I've started looking into all this is mainly I have to try and take my kids more palces as they get older and if I'm always running off to the bathroom or cant' go anywhere because of D then well that's no life at all. "I'm sorry momma can't see your ball game because I have the runs.." you know it just doesnt' fly. A lot of my anxiety is what if I have D while I'm out. Like right now in my life I am MEGA stressed but I haven't had D (as of yet knock on wood)... it's the gluten... gotta be.

Thank you for the advice I will avoid those triggers too :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you so much and yes it's worth a lot! -- I think/hope I'm on the right track.

Oh YES --- The reason I've started looking into all this is mainly I have to try and take my kids more palces as they get older and if I'm always running off to the bathroom or cant' go anywhere because of D then well that's no life at all. "I'm sorry momma can't see your ball game because I have the runs.." you know it just doesnt' fly. A lot of my anxiety is what if I have D while I'm out. Like right now in my life I am MEGA stressed but I haven't had D (as of yet knock on wood)... it's the gluten... gotta be.

Thank you for the advice I will avoid those triggers too :)

Yea I so wished I could have been diagnosed when my kids were little it would have made such a difference in their lives. All the picnics moving closer and closer to the bathroom at the park until we had to stop having them at all. Having to stop taking my daughter to her horseback riding lessons and the missed plays and school activities. I even missed my son's HS graduation and cryed for days because of it. I am glad to hear your doing better and I hope it continues.

GFinDC Veteran
GFinDC
Posted

From what I've read here. most GI's tell their patients with celiac to stop eating gluten. That's about it. They don't offer much in the way of guidance or support.

When I went to the celiac center at U of MD in Balitmore they had me meet with a dietician. I'd already been gluten free for 3 months and had found this site so there wasn't much she could tell me.

If you want a GI or other doctor to counsel you on your condition you could research doctors that deal with celiacs. Otherwise most of the docs here are useless.

wow89 Rookie
wow89
Posted
  • Author

Thanks you frothe tip on the doctor, that was really the only reason I wanted a diagnosis so I could get some guidance, but looks like you all are the pros! Thank you all for sharing.

Awww...raven, that makes me so sad, I totally understand how you feel. A virtual hug for you. I'm not that young just waited for tummy to get better and had kids "later in life" Gonna turn 40 soon... sigh ;) Beats the alternative though.

I went on my gluten free shopping today, I got some bread it was pretty nasty, but I ate it anyway. Since all of these things are lower in vitamins and fiber, so you just supplement? How do you get all your fiber in a day?

This whole lifestyle change thing is hard.

ravenwoodglass Mentor
ravenwoodglass
Posted

Some of the breads are better than others. Most are best toasted or microwaved first. Udi's and Grainless Baker are a couple of my favs. Both make a multi-gluten-free-grain varitey. I'm a 'pasty white bread girl' myself though. :D

For fiber I usually go with fruits and veggies. Sweet potatos have a lot of both soluable and insoluable fiber if you like them.

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