6 Months After Diagnosis - Blood Test Show Celiac Levels Are Down Significantly But Still Not In Normal Range

[i-miss-cookie-dough]

once it gets into that normal range,

THEN will i feel better?

ugh.

dr. just said to keep at it

and come back in in 3 months

to check the levesl again.

just feel very frustrated.

i mean, if i my blood test levels

are now just 3 pts from the normal range,

should i FEEL BETTER?

or maybe this IS my "feeling better."

though i dont feel any different

from when i was eating gluten : (

thoughts?

[happygirl]

If you are still positive, your body hasn't healed yet. So you probably aren't fully absorbing vitamins, minerals, nutrients, etc.

It takes a long time for some people to heal. Hang in there.

[i-miss-cookie-dough]

If you are still positive, your body hasn't healed yet. So you probably aren't fully absorbing vitamins, minerals, nutrients, etc.

It takes a long time for some people to heal. Hang in there.

thanks so much, happy g!

i still have hope.

so, do you think that

some body's continue

to be symptomatic

until all

celiac positive-ness is gone?

do you really think that

i could feel better after

i am negative?

(and when the test DOES come back

negative, i still have the disease, right?)

confusing.

but trying to hang in.

and just hope that once i heal,

i will FEEEEL different : )

[kbtoyssni]

It sounds like it's just taking you a long time to heal. Which must be really hard, but hang in there. Maybe some gluten in sneaking into your diet and you don't realize it. Have you checked all pet food, personal care products, any housemates' personal care products, do housemates eat gluten? Did you replace all wooden spoons, the toaster? I'm sure you've heard this all before, but I wanted to say it again just in case.

And, yes, when your tests finally do come back negative, it just means you've healed. You still have the disease, and you still have to stay gluten-free.

[flourgirl]

Hate to tell you, but yes, you will always have Celiac Disease. You can never eat gluten. I'm still healing, too. Had my diagnosis last Nov. I am getting better, but it seems a slow process. I know that you will feel better too. Eventually you won't quite remember the details of how sick you were....only that you were sick. Hopefully that will be enough to keep you from feeling too tempted to eat the things that you know you can't have. After a while, we'll forget what that stuff tasted like...won't we? Wish you good luck in your diet and with your healing. Hang in there!

[i-miss-cookie-dough]

thanks so much for the feedback.

and you know, maybe i am NOT

as careful with some things -

wooden spoons, toasters, etc.

as i should be...

or not as insistant in restaurants as i should be.

and when i make food that other

ppl have cooked - i never know how

careful THEY were.

you know?

AND, i DO eat a lot of

stuff from the prepared

food sections of traders or whole foods.

and who knows!

that stuff could be contaminated too?

do you think that small amounts

could be keeping me feeling this way?

so run down and stuff?

[MELINE]

I feel nausea too. 4 months gluten-free with some accidents lately, but nausea is still there. 1 - 2 hours after eating. Horrible. I am having my biopsy on friday so I will see what is going on and I will ask my doctor about the questions you posted.

Kisses

[happygirl]

thanks so much for the feedback.

and you know, maybe i am NOT

as careful with some things -

wooden spoons, toasters, etc.

as i should be...

or not as insistant in restaurants as i should be.

and when i make food that other

ppl have cooked - i never know how

careful THEY were.

you know?

AND, i DO eat a lot of

stuff from the prepared

food sections of traders or whole foods.

and who knows!

that stuff could be contaminated too?

do you think that small amounts

could be keeping me feeling this way?

so run down and stuff?

Yes, yes, yes, yes. Not all people are extremely sensitive, but some are. Tiny amounts of gluten affect some way more than others.

I am extremely sensitive to gluten. I've been glutened in all those instances (eating out, other ppls foods, prepared foods, etc). I'd cut down and go 100% gluten free and see how you do. Good luck.

[i-miss-cookie-dough]

Yes, yes, yes, yes. Not all people are extremely sensitive, but some are. Tiny amounts of gluten affect some way more than others.

I am extremely sensitive to gluten. I've been glutened in all those instances (eating out, other ppls foods, prepared foods, etc). I'd cut down and go 100% gluten free and see how you do. Good luck.

verrrrrrrrrry interesting.

b/c i dont ever get like "GI issues"

so i never thought i was that sensitive.

b/c i never really have like these

sudden dramatic physical reactions!

but maybe the fact that i am

in a pretty constant state

of nausea and fatigue - is just

MY body's way of being sensitive.

can't wait to read that celiac book you recommend.

looks super interesting!

thanks again, happy!

[happygirl]

Keep in mind that the "typical" GI symptoms that we think of are now actually thought to be in the minority. Doctors now think that atypical presentations are probably in the majority of patients.

"Reports from Scotland, England, Canada, and the United States have also shown that almost 50% of patients with newly diagnosed celiac disease do not present with gastrointestinal symptoms." Open Original Shared Link

[MDRB]

It is so confusing post diagnosis isn't it?

When I was diagnosed I cut out all processed food unless it was labeled as gluten free or I had called the company to check with them.

I also took a long time to heal. Meanwhile you are non absorbing the vitamins you need to feel healthy and energetic.

If you want to speed up recovery stay 100% gluten free (obviously), but also try a gluten free multivitamin and a gluten free echinacea tablet. Echinacea boosts your immune system and will help you recover quickly and the multivitamins will hopefully help you feel a bit better while you recover.

Good luck, its hard at first but eating gluten free will become second nature and you will feel better. Don't get disheartened.

Ps: I miss cookie dough too

[i-miss-cookie-dough]

you guys are gluten free rockstars!

thank you so much for your feedback!

going to

a. get on the vitamins.

b. try and lay off the prepared food and cook????? : )

c. keep my chin up and know that health is a comin!!

[oceangirl]

Hi,

It's taken 2 SOLID YEARS gluten -free (And I NEVER eat out, eat prepared food or eat ANYTHING I or my Michael has not cooked for me! Oh, my sister now, too, because she gets it!) for me to get my tTG level in the normal range- 2 YEARS!!!!!

Hang in there and, not to be too harsh, but it seems like you might need to clean up some of the variables to feel better. Don't eat out, eat prepared food or others' cooking for awhile.

Just my thought. Hope you feel well soon!

lisa

[CJS]

I'm confused - a gastroenterologist told me that unless I was eating gluten for 4-6 weeks at every meal the blood test would not be conclusive. What blood test can be run?

Candy

[kbtoyssni]

I'm confused - a gastroenterologist told me that unless I was eating gluten for 4-6 weeks at every meal the blood test would not be conclusive. What blood test can be run?

Candy

Your GI is correct (he's a keeper!) But if you have tested positive, you can then repeat the test every six months or so to see your levels go down. And some people's levels will stay high enough to test positive for a while - this usually means gluten in sneaking in somewhere and you aren't 100% gluten-free. Or I guess if you were very sick, they might stay high for a while.

[AliB]

Back as far as the end of the 1800's doctors realised that Celiacs had a problem with carbohydrates. Whilst some can cope with carbs others can't. If you have dropped gluten and are finding after some time that you are still not well, or as some find, they have an initial recovery then start to go back downhill, your problem may actually be due to more than gluten.

I had been getting a lot of problems for some years that I didn't realise could be Celiac or GI and it wasn't until my digestion finally collapsed in January that I figured out what was going on. I stopped gluten and dairy but was still having problems with other non gluten foods. That is when I realised that it was carbs that were the problem, not just gluten.

I immediately dropped not just the gluten, dairy, but virtually all carbs and particularly sugars which are a big antagonist and am currently following the SCD/Paleo type diet, eating just protein and fats and getting my carbs just from fresh fruits and veggies and a little honey and nuts. With that simple diet and some good supplements my gut is really starting to heal and even just after a couple months I am beginning to get some energy and can even tolerate a few foods I couldn't just a month or so ago.

Part of the problem is that when we have to go gluten-free we often try and compensate for the missed gluten foods by consuming a lot of different carbohydrates which we then also become intolerant to. By doing it this way, I have cut straight to the chase - no it's not easy but you get used to it - and have given my gut a real good starting boost. The less rubbish I eat, the happier my body is and the quicker it is healing. Sometimes, only dropping gluten is just not enough to help recovery. The more we bombard our bodies with foods it cannot cope with the longer it will take to heal.

[Gwen B]

verrrrrrrrrry interesting.

b/c i dont ever get like "GI issues"

so i never thought i was that sensitive.

b/c i never really have like these

sudden dramatic physical reactions!

but maybe the fact that i am

in a pretty constant state

of nausea and fatigue - is just

MY body's way of being sensitive.

can't wait to read that celiac book you recommend.

looks super interesting!

----------------------------------------------------------------------------------------------------

Amazing! I was just about to post a very similar question when I found your thread and find it soo interesting. I have also been on this gluten-free rollercoaster for about 4 1/2 months and getting tired of being tired all the time and getting mild reactions to stuff I cannot trace.

My family eats gluten and although they are supposed to prepare their stuff in the gluten zone they never wipe up and frequently eat just standing or sitting around with their crumbs dropping everywhere . I am going out to get some gluten only saucepans and separate cloths for wiping down surfaces, maybe even I should wear gloves to clean the kitchen.

I am eating mostly home cooked food, few grains ( I sussed that Tapioca upsets me), rice, quinoa , fairly low carb, plenty of vegetables, and vit supplements. Sometimes I have no appetite and I often have felt nauseous and generally weak, tired and brain fogged. I know I can feel better as I did feel good when I first started the gluten-free diet and also about a month ago after I had sussed out the latest food intolerances, Tapioca and Carageenan. But these last three weeks are dragging on with all this uggh.

I guess I'll carry on and am taking on board all this info and will look out for your updates, haven't tried echinachea yet.

thanks