Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Tomorrow Is The Day

KMMO320

By KMMO320
in Coping with Celiac Disease

Recommended Posts

KMMO320 Contributor
KMMO320
Posted

tomorrow is the day I find out my Endo and blood results and finally get a Dx, possibly.

I am nervous. There is part of me that is hoping it IS celiac disease because its not the worst thing in the world to manage and it would just explain everything, and part of me is praying to God it is NOT because all I want to do right now is enjoy the things I have been enjoying all my life. lol

I really don't know what else it could be.

I have been gluten-free for 2.5 weeks now and for the most part, I feel pretty good. So I kind of feel like ok..this HAS to be what it is!

Today at work (I waitress) I had some grilled chicken, mashed potatoes covered in a creamy blue cheese sauce. NOW..I have heard 2 things about Blue Cheese..I have heard that it is NO NO because of the way it is made (on bread) and I have heard that it is perfectly fine to eat...so I had this meal Saturday night and felt ok, so I had it again today...MISTAKE!!

I can't say if it WAS the Blue Cheese or if something was CC but I came home with a whopper of a migraine. I had to go straight to bed. I just woke up a little while ago and feel totally drained. My stomach is ok..its just my head. So much pressure. This happened last week after I ate half a donut.

I cant wait for tomorrow. I just want to KNOW!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Well, I hope you get a clear result. If it is positive you are all set, stay gluten-free. If it is negative, you otter stay gluten-free anyhow since the false results are not always right. You can always do a gluten challenge after a month or two and see what happens. But since you are feeling better without gluten it is best to avoid it IMHO.

1desperateladysaved Proficient
1desperateladysaved
Posted

tomorrow is the day I find out my Endo and blood results and finally get a Dx, possibly.

I am nervous. There is part of me that is hoping it IS celiac disease because its not the worst thing in the world to manage and it would just explain everything, and part of me is praying to God it is NOT because all I want to do right now is enjoy the things I have been enjoying all my life. lol

I really don't know what else it could be.

I have been gluten-free for 2.5 weeks now and for the most part, I feel pretty good. So I kind of feel like ok..this HAS to be what it is!

Today at work (I waitress) I had some grilled chicken, mashed potatoes covered in a creamy blue cheese sauce. NOW..I have heard 2 things about Blue Cheese..I have heard that it is NO NO because of the way it is made (on bread) and I have heard that it is perfectly fine to eat...so I had this meal Saturday night and felt ok, so I had it again today...MISTAKE!!

I can't say if it WAS the Blue Cheese or if something was CC but I came home with a whopper of a migraine. I had to go straight to bed. I just woke up a little while ago and feel totally drained. My stomach is ok..its just my head. So much pressure. This happened last week after I ate half a donut.

I cant wait for tomorrow. I just want to KNOW!

I hope you will get to the root of your health problems and get better. I know just that hopeful/dreading feeling of waiting for results. I was glad mine came by e-mail. I was able to hold my breath and then look!

If you have gluten intolerance you will be happy, not because you have one, but because now you can find out what to do. If you don't gluten intolerance then you need to search out another explanation.

My genetic test was positive and my blood antibody test (IGG) was negative. My MD and Chiropractor said the antibody test was a false negative. They trusted the genetic test. Also, by then I was reacting forcefully to gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Since you are feeling a bit better gluten-free stay that way for a bit and then challenge if you feel the need after a couple of months no matter what the results.

As was mentioned false negatives are unfortunately all too common.

If you had that grilled chicken at work there is a good chance it was CC'd unless they use a clean pan to cook it in and took the other precautions that need to be taken for us.

KMMO320 Contributor
KMMO320
Posted
  • Author

Well..blood and.endo are.negative. Aside from some serious ulcers, she said she saw nothing wrong in there. She said there is zero.evidence to support celiac disease or intolerance, even though all my symptoms point to it. She is redoing bloodwork today and in 3 mos, but otherwise, thats it. Im pretty aggravated.with my body right.now. I just dont know what to do.

dani nero Community Regular
dani nero
Posted

Well..blood and.endo are.negative. Aside from some serious ulcers, she said she saw nothing wrong in there. She said there is zero.evidence to support celiac disease or intolerance, even though all my symptoms point to it. She is redoing bloodwork today and in 3 mos, but otherwise, thats it. Im pretty aggravated.with my body right.now. I just dont know what to do.

Well.. you can always go on being undiagnosed. I'm undiagnosed but I'm pretty sure I have celiac. No one can stop you from living gluten-free if it's the only way you're feeling better.

I myself decided to stop going after an official diagnoses once I found out my thyroid "might" have started being effected. I don't want risk any permanent damage to it and a gluten challenge for a 30% accurate testing system is not worth it to me. I don't feel a need to prove it to others any more because all my symptoms are starting to go away.

Don't worry, no matter what it's not the end of the world :-)

You can also ask for your test results and show them to the members here. THey're pretty good at reading them.

Did the doc check for vitamin levels in your blood?

KMMO320 Contributor
KMMO320
Posted
  • Author

Thanks. Well whats happening is that I always trusted dr's opinions and this dr is saying she does.not reccomend going gluten-free if there.is no evidence and therefore do NOT go gluten-free. so part.of me is like...so, this is all in my head? For almost 3 weeks I have been gluten-free.and have had only 2.migraines..coincidentally on the same.days.I knowingly.ate.gluten.and all my bowel movements.have been normal ish..after.17 years of loose bms. (ps, forgive my typing, on phone lol)

I have more.energy, less foggy head, etc..

She.says.its my.ulcers.that I have been messing up my sromach...I said ok but what about my head.stuff? She said she had.no answers...so had me give blood.for.a.genetic test. I just.dont know what to do. I was so upset, I came home.and ate pieces of cornbread. Sigh. Maybe i am just.intolerant.and that would be.great I guess.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


KMMO320 Contributor
KMMO320
Posted
  • Author

Oh...my b12 and iron were great..but vitamin D was.very very low. She.prescribed.some high.dose for me

ravenwoodglass Mentor
ravenwoodglass
Posted

Stay on the diet if it is helping and it sounds like it is. Do get actual copies of the endo and blood results and post. Some doctors don't like to diagnose unless villi are totally destroyed and ignore the stages that come before total destruction. Ulcers can be the result of celiac also.

dani nero Community Regular
dani nero
Posted

Even my doctor thought whether I go gluten-free or not was up to me. Doctors are not always right and not always wrong when it comes to celiac disease. Being gluten-free will not harm you in any way even if you're not intolerant, but if you happen to have celiac and don't feel any symptoms the damage will still be done.

KMMO320 Contributor
KMMO320
Posted
  • Author

Thanks everyone. I just really thought Id get an answer :( ah well, i should be happy.

beachbirdie Contributor
beachbirdie
Posted

Thanks. Well whats happening is that I always trusted dr's opinions and this dr is saying she does.not reccomend going gluten-free if there.is no evidence and therefore do NOT go gluten-free. so part.of me is like...so, this is all in my head? For almost 3 weeks I have been gluten-free.and have had only 2.migraines..coincidentally on the same.days.I knowingly.ate.gluten.and all my bowel movements.have been normal ish..after.17 years of loose bms. (ps, forgive my typing, on phone lol)

I have more.energy, less foggy head, etc..

She.says.its my.ulcers.that I have been messing up my sromach...I said ok but what about my head.stuff? She said she had.no answers...so had me give blood.for.a.genetic test. I just.dont know what to do. I was so upset, I came home.and ate pieces of cornbread. Sigh. Maybe i am just.intolerant.and that would be.great I guess.

Ugh.

Well, false negatives ARE common. Don't take a negative test as a recommendation to continue eating gluten!

I hate to see you say "maybe I am just intolerant". Non-celiac gluten intolerance is a very real condition and should not be discounted. The symptoms/reactions can be as bad as a person who is celiac, the only difference is that the intestines do not sustain damage. The misery gluten causes is the same as for celiac!

The medical field IS beginning to accept this. Unfortunately it is not yet widespread, but many of the pioneers in the field are writing about it. Dr. Scot Lewey is one (and has many articles on celiac.com), Open Original Shared Link about his own experience with gluten sensitivity.

So, whether you are "intolerant" or "celiac" is not as important as whether you are healing on a gluten-free diet. If that is the case, then that looks like a good path for you.

I am very glad your doc is working with you and going ahead with the genetics and is also willing to re-test. Most would have quit on you at this point. Of course, you probably don't want to be eating gluten for 3 more months. :blink:

I am shocked she would tell you NOT to go gluten free.

KMMO320 Contributor
KMMO320
Posted
  • Author

I think she thought shed save me money, she kept saying how expensive being gluten-free was.

I didnt mean to discount intolerance, I apologize. And believe me, i.feel so miserable most days, I get it. Feeling lousy.now after.eating all that cornbread lol...sigh...but seriously, thanks all for being here. I am going.to keep plugging away. i am thankful at least to find out about my ulcers. She showed me pictures. Not pretty! Kind of scary.to see, actually.

KMMO320 Contributor
KMMO320
Posted
  • Author

Also, my primary dr did a blood test..I dont think it was a full panel..and it showed signs of celiac disease, which is why I got sent to the Gastro in the first place.

My Gastro today said that all the blood work she herself took, showed NO signs of celiac disease at all..which contradicted what my Primary took..which led her to believe that there was a mixup in blood work. My Primary's bloodwork showed low IGA levels and the Gastros did not. She thinks one of the 2 tests may be wrong. So I had to retake them today, in addition to genetic testing, which my ins may or may not cover but I had them do it anyway since I was there, I may regret that later :(

I should have though to ask for copies or my tests, but I was shocked. I thought for sure I would have everything explained away today. years and years and years of feeling like this. But yes, like everyone says, I dont need permission to eat or not eat anything. I will just pick myself up and carry on and see how I feel gluten-free and then likely challenge myself at some point.

GFinDC Veteran
GFinDC
Posted

The corn bread probably has wheat flour in it if it was a mix? Ah well, something to watch out for later.

Quite a few people do end up without a formal diagnosis. The testing process just isn't really perfected yet. We still don't have the Star Trek tricorder available. May never for that matter.

squirmingitch Veteran
squirmingitch
Posted

For 3 weeks you have been gluten-free & you re-did the blood work for celiac. I hate to say it but there's every chance it will be neg also b/c you were gluten-free for 3 weeks.sad.gif

KMMO320 Contributor
KMMO320
Posted
  • Author

The corn bread probably has wheat flour in it if it was a mix? Ah well, something to watch out for later.

Quite a few people do end up without a formal diagnosis. The testing process just isn't really perfected yet. We still don't have the Star Trek tricorder available. May never for that matter.

Oh yeah, it was full gluten cornbread. I was so upset when I came home, I said oh well the Dr says I am not Celiac OR intolerant and to start eating gluten again so fine!!! I felt a little bad but not terrible...so tonight I also ate full gluten chinese food and NOW I feel full blown awful. Going to bed soon.

After I calmed down, my husband said if I feel better not eating it then that says something. He has epilepsy but hasnt had a seizure in years..does that mean he should stop taking his meds because MAYBE he will never have one again? NO. You do what keeps you feeling good.

bleh.

KMMO320 Contributor
KMMO320
Posted
  • Author

For 3 weeks you have been gluten-free & you re-did the blood work for celiac. I hate to say it but there's every chance it will be neg also b/c you were gluten-free for 3 weeks.sad.gif

Thats what I asked my dr too...and she said oh no, it will be fine.

Whatever. I decided I am done. I will just do what I know works from now on.

squirmingitch Veteran
squirmingitch
Posted

We always say you don't need anyone's permission to eat gluten-free. And if eating gluten-free makes you feel better then by all means DO SO! Live happy & long.smile.gif

KMMO320 Contributor
KMMO320
Posted
  • Author

Another thing...

I have a few ulcers, which I am happy she found. She prescibed me prilosec and I immediatley started feeling better.

Today at the follow up, she says I was negative for H. Pylori, which causes most ulcers..so that must mean that I take too much advil for my migraines. She said 3 times a day every day is too much! I said, I never said I took it every day. I take whatever is handy, be it Advil, Motrin or more often, Tylonal. but yes, I take SOMETHING for my headaches, but not every day, let alone 3 times a day. maybe a few times a month..

She said well then, thats it..you take too much advil and thats why you have ulcers.

I would go to a new dr but really, my Insurance is not great as it is and my copays and deductibles are piling up so fast right now, and Im tired.

squirmingitch Veteran
squirmingitch
Posted

She's a real doozie isn't she? I wonder where she got her med degree? The mail order university of Tim Buck Too? You might be safer & healthier staying away from her!

dani nero Community Regular
dani nero
Posted

We still don't have the Star Trek tricorder available. May never for that matter.

:lol: :lol: :lol:

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,874
    • Most Online (within 30 mins)
      7,748
    Kelly Bates
    Newest Member
    Kelly Bates
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I have an endoscopy booked for mid-September to test for Celiac. My gp seems convinced it is celiac and I should eliminate gluten right away, but the gastroenterologist I was referred to says if I'm totally gluten-free then they won't be able to detect celiac from the endoscopy, and I should load up on gluten 2 weeks before the test. So I guess I shouldn't eliminate gluten then? Or stop and start again closer to the appointment date. But I'm also on the wait list in case they can get me in sooner, because I'm losing weight. I don't want to have to go back and do it over again if I can help it. They also were unsure if there isn't something else wrong with my stomach, so that's a possibility. I don't have the details but from what I understood my blood tests results were positive but on the low end. So I'm getting mixed up here, do I go gluten-free or not? Would 2.5 months of being gluten-free make any noticable difference? 
    • knitty kitty
      Refractory Celiac disease - what to do

      By knitty kitty · Posted

      Being low in B12, Folate B9, ferritin, zinc and copper sounds consistent with anemia which can often occur with Celiac.  What did your doctor recommend? What about your Vitamin D?  It helps regulate the immune system.  
    • ehb
      Refractory Celiac disease - what to do

      By ehb · Posted

      @knitty kitty thank you I am exploring these options, I really appreciate all the suggestions and info. I am only slightly below the normal range for folate, zinc and copper. And in the low end of the normal range for B12, ferritin, and vitamin A. I’m good for carotene magnesium and iron, but I’ve been taking 400 mg magnesium daily 
    • Alibu
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Alibu · Posted

      I just had my endoscopy the other day and the doctor took 12 samples because he said if we're going to find something we're going to find it today LOL. But when he got down there, he said everything looked good. So I have it in my head again that it's going to be negative because everyone I've heard of who had a positive biopsy had their endoscopies where the doctor was like yep, I can see the damage. My tissues all look great apparently. So if they come back negative, I'm not sure where to go from here. Could it still be a non-celiac gluten sensitivity even with my blood work? I thought NCGS didn't show up on blood tests. Is it possible that the biopsy still comes back positive even if everything looked healthy on endoscope? I had it done at a big hospital in the state, so I would think they'd have the kind of equipment where they'd be able to see it well. I even have pictures in my report and they don't seem to have the damage that others have seen.
    • trents
      Virus, celiac disease or both?

      By trents · Posted

      That's just it. When they are doing an EGD, even with biopsy, if they aren't thinking about celiac disease they may miss it. They should take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and easily missed if sampling isn't through. And patch damage may explain lack of dramatic symptoms. Let me assure you that we frequently have posters on this forum who were silent celiacs for years and were diagnosed incidentally with celiac disease when their docs were checking for other things. They developed other medical problems such as anemia or vitamin and mineral deficiencies, neurological deficits, Hashimodo's thyroid, osteoporois, etc. - non GI symptoms - but their docs recognized those problems as often connected to celiac disease and had them checked for celiac disease, both blood antibody testing and biopsy, and found damage. A couple of years ago the Mayo Clinic did a large study involving over 300 people. They started with those officially diagnosed with celiac disease and also tested their first degree relatives. They found that almost 50% of  the first degree relatives tested positive for celiac disease and many or most were totally caught by surprise because they were largely asymptomatic. Their diagnosis was confirmed by biopsy. I really don't have anything more to say. You have some decisions to make.
×
×
  • Create New...