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Second Opinion. Help!

achiera

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achiera Rookie
achiera
Posted

ok i need some opinions from everyone here. about 4 or 5 years ago, i started getting very sick, stomach pains, joint pain, headaches, weight loss, constant hunger, etc. im sure you all know what i mean ;), anyway. i was first diagnosed with ibs, after my idiot dr. had me go gluten free for 6 months and THEN did the blood work and exploratory sugery. suprise! everything was normal! but i continued on the gluten free diet because frankly it was the only thing that helped. so i went to another dr who ran more tests about a year after the first dr. we didnt do the blood work again because i was still eating gluten free. but he, from the list of my symptoms, diagnosed me with celiac disease. so up until 8 months ago, besides some weight gain, i have had no problems.i was even getting respitory reactions from flour at one point. but while i was on my honeymoon in italy this past april i decided to start eating gluten again, what better place to start right? so that i could get my bloodwork retested. so ive been eating gluten for the past 8 months or so, but the funny thing is, i felt fine! up until a few weeks ago. i started noticing mucus in my stool, and i weird feeling in my stomach, nausea, some joint pain. is it possible that its taken 8 months to deteriorate my system? i really thought maybe i didnt have celiac disease after all, but now i dont know if its just nerves or the symptoms are back again. i have a appointment on the 30th with a new doctor to get the bloodwork done again, and a third opinion. the bad thing is that ive gotten so used to eating this way! and it will be super hard going gluten free again! help! any advice or opinions?

thanks!

alexis

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achiera Rookie
achiera
Posted
  • Author

bump, anyone? i know its the holidays, but any opinions? tia!

alexis

Nantzie Collaborator
Nantzie
Posted

I think your plan sounds good. It makes sense to me that some people would take a while to get symptoms again after a long period of gluten-free. If your intestines had healed and then the damage slowly came on again, it might take a while to get symptoms.

Nancy

Guest nini
Guest nini
Posted

Keep in mind too that the blood tests may still not show Celiac... (I don't think they are as accurate as a dietary test...) After you have all the tests done, you will still want to go back to gluten-free because your body has showed you that it has a problem with it.

Yes you could have healed up enough to the the point that it's just taken until now for damage to resurface, Or, you could be going through a period of no symptoms. Lots of people go through periods of their life where they don't see any obvious symptoms when they consume gluten. But, based on your history and your response to the gluten-free diet in the past, I would say that you do have at the very least a Gluten Intolerance which COULD lead to Celiac if it hasn't already, and to continue to consume gluten would continue to cause damage to your insides.

Despite the results of your tests, I would reccommend that you go back to a 100% Gluten Free diet after the testing is done, and keep track of any symptomatic improvement no matter how small it seems. (for example: one of my symptoms if I get accidentally glutened, is that my face breaks out in a pimple like rash all over... it goes away after a few days, but even if I don't get the big D or throw up, if my face breaks out like that, I know I've been exposed to something w/ gluten).

achiera Rookie
achiera
Posted
  • Author

hey, thanks for the posts. i went back and looked into my records from the first doctor last night. on my biopsy results, it says that it showed some signs were slightly elevated, but not enough for a proper diagnosis. but the stupid doctor didnt remember she had me go gluten free 6 months prior to the biopsy and blood tests. deep down i know i do have celiac disease. but its one of those things were i just need to know for sure. after the tests done, even if its neg again, im going gluten free. i definitly notice a difference in my body when i eat gluten. i was talking with my husband about it last night, and in the past 8 months i have had major mood swings, cystic acne (which i never had before), extra itchy scalp, foul smelling stool, starnge odor from my underarms, yeast infections(i would get 1 a month before going gluten free), sore muscles, ive had a foot fracture from something that shouldn't have caused one, tendonitis in my wrist and my achilles tendon, headaches, fogginess, and i either have the big d or i cant go, for the past month i havent had a normal bowel movement, my skin feels gross, i just added up all the things ive been feeling that i havent connected to celiac disease, and they all add up to celiac disease. it will be interesting to see what the blood tests say!

thanks everyone!

alexis

Lovinglife Rookie
Lovinglife
Posted

Alexis, I'm glad to hear that you are going on the gluten-free diet. I have come to find that it's best to take the reigns of one's health! :)

Florence

Guest mvaught
Guest mvaught
Posted

I also have a stupid doctor that has not done bloodwork (and a G/I specialist that said had IBS and to take over the counter gas med - lol - what an idiot), but i feel so much better after being gluten free - which is haw i am sure that i have celiac disease. I acidently ate some gluten the other day and imediately felt horible (all the same things that everyone else seems to have - joint/muscle, tummy, tired, foggy, injuries that won't heal, etc) anyway, i have only been gluten free for a couple of months and it has worked wonders - but not all the way healed yet, i still have some problems. my doctor now is willing to do the bloodwork - but i relaize i must be eating gluten to have it show up - does anyone know how long - or about how long - i should eat gluten for? please - anyone??

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achiera Rookie
achiera
Posted
  • Author

does anyone know how long - or about how long - i should eat gluten for? please - anyone??

Guest mvaught
Guest mvaught
Posted
does anyone know how long - or about how long - i should eat gluten for? please - anyone??

the second doc i went to said bewteen 6-8 months is the amount of time to do the gluten challenge, ive been doing ti 8 months now and as of 1 month ago started really feeling symptoms, but like i said before after reflecting on it i realised ive had other symptoms for months and months now. but after 6 months of doing it i would have thought , no i dont have celiac disease. so i guess it depends on your body. you may feel awful after only a few months and that might be enough time. im hoping this new doctor is atleast familiar with celiac disease. it seesm like its so hard for everyone to find a good doctor! but if you take the test now after being gluten free, it most likely will come out as a false negative.

alexis

thanks so much! i wasn't off of it for very long (only a couple of months - well, on and off, i got married and during wedding/honeymoon - i was bad) and actually i discovered that there are lots of things i ate that i thought didn't have it in it - actually did (like taco bell crunchy tacos with beans - who knew their corn has gluten- no wheat, but indeed gluten...i'm still adjusting to reading labels/contacting companies), so hopefully i won't have to be on it too long...i have started on it again and i feel awful all of the time. i can't wait to be off of it, because i felt sooo much better avoiding it to the best of my ability. i feel for you having been on it so long - 8 months, wow! i hope you get your diagnosis after all of that and i'm glad your doctor is at least familiar - that is so great for you! best of luck!

-michelle

jen3899 Apprentice
jen3899
Posted

yeast infections(i would get 1 a month before going gluten free),

achiera Rookie
achiera
Posted
  • Author
yeast infections(i would get 1 a month before going gluten free),

Sounds like Candida to me, you should look it up, I have found connections between Candida and celiac disease.

-Jen

hi jen, i definitly noticed a connection bewteen the 2! i really can't wait to go gluten free again, im having pizza tonight (i know, i know...) and tommorrow its gluten free for life! my doctors appoutnment is on tuesday, it shouldnt affect the test if im gluten free for a few days before will it?

alexis

Guest mvaught
Guest mvaught
Posted
hi jen, i definitly noticed a connection bewteen the 2! i really can't wait to go gluten free again, im having pizza tonight (i know, i know...) and tommorrow its gluten free for life! my doctors appoutnment is on tuesday, it shouldnt affect the test if im gluten free for a few days before will it?

alexis

let us know how it goes with the test...wondering the same thing myself. i can't wait to be gluten free again. i hate gluten in me but don't want to mess up my testing because i haven't eaten enough gluten - this is ridiculous - why can't they (doctors) just figure it out - ughhh. thankfully this is such a supportive site that we can all feel better about US knowing what is wrong with us even if doctors don't.

-Michelle

achiera Rookie
achiera
Posted
  • Author

i need another opinion, my doc appt got bumped to january 10th, tuesday. and i have already gone gluten free as of monday, my appt was supposed to be yesterday. but i feel a little better already and i dont want to start eating gluten again, will it affect the blood test if i am gluten free for a week before the test? or am i safe to continue eating gluten free and hope that i have enough in my system from over the past 8 months for the test to be accurate?

thanks!

alexis

Guest mvaught
Guest mvaught
Posted
i need another opinion, my doc appt got bumped to january 10th, tuesday. and i have already gone gluten free as of monday, my appt was supposed to be yesterday. but i feel a little better already and i dont want to start eating gluten again, will it affect the blood test if i am gluten free for a week before the test? or am i safe to continue eating gluten free and hope that i have enough in my system from over the past 8 months for the test to be accurate?

thanks!

alexis

again, i really don't know for sure - but from everything that i keep reading, chances are if you feel better - your test may get messed up...then again, i suppose you could totally come back with a positive since you were on it so long. i know this is a non-answer, sorry. i am also afraid that hving been gluten free my test will get messed up - i'm so anxious about it i haven't even scheduled my appointment with my doctor yet - guess i'll be doing that today, because i feel so bad that certainly it would show up, then again??? i'd like to hear what you decide to do (gluten again vs gluten free) and how it works out.

key Contributor
key
Posted

Keep eating gluten. IT is only for a few more days. You don't want any doubts in your mind. I had borderline blood tests after being gluten free for 5 weeks. i tested myself several times, but I get sick everytime. If you don't get sick, then you will always question the result. i agree though, that even if your tests are negative you should not eat gluten.

I too had yeast infections almost every month for six years! Ever since going gluten free, I haven't had one in 9 months. Plus,alot of other things got better for me.

Goodluck and let us know how your test results turn out.

MOnica

julie5914 Contributor
julie5914
Posted

I doubt it would affect the test - I've been gluten-free for 6 months and my blood tests are still positive. But if it is very important to you to have positive blood tests, keep eating it. Or have a big bowl of frosted mini wheats before you go! (Which is what I did the first time)

Guest mvaught
Guest mvaught
Posted

I had my bloodwork done today - fingers crossed that I ate gluten long enough for it to show up. My doctor doesn't listen well - he seems to think that the only symptom for celiac is diarreah (he is confused with me having both that and constipation - which from everything i have read celiac disease includes both). I tried to explain that when I tried going off gluten- my whole body felt better and when I am on it I feel awful in every way. He just blew me off, but indeed sent me to get my blood tested, so I really hope I get my diagnosis. I feel that I need the validation that would give after all of these years of seeing doctors and having them tell me nothing is wrong. i suppose that I should just stop eating gluten even if it is negative instead of keeping on it and pursuing more tests. Feeling pretty frustrated and sad right now...

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