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notme!

My Doc's Clinical Impression ?

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here i am again, frustrated out of my mind. my husband says: why don't you just post what the doctor wrote. my blood test came back negative, but i expected that because i have been on the gluten-free diet since the beginning of august and just had it done last monday. so i had the endo thingy done on friday and this is what she wrote:

hiatal hernia (small), small esophageal ring, mild flattening of duodenal folds

meds: resume home meds (i take claritan d-12, loritadine 10 mg, rampiril (hypertension) every day)

other tests scheduled: no

other instructions: continue gluten-free diet

she wanted me to call her office and set up an appt w/dietitian/nutritionist and to schedule a follow-up in 3-4 months. the nurse there told me the h-pylori (sp?) was negative and also that my iron was high (???) she said my biopsy results weren't there yet only chemistry stuff (what the krap does that mean??) also ADVISED ME TO GO ON THE INTERNET b/c i can find alot more information there (REALLY???? wow, thanx..... i want my $2 back....)

i already have found out a hundred times more here than anything they told me. so here i am again......

also, having terrible digestive issues since being 'scoped' i'm racking my brain to figure out what i've eaten to make me have terrible 'D' ("no, thanx, i have to stay close to my bathroom. maybe another time......") could the test have messed me up temporarily? i mean, today i ate potatoes & mushrooms w/fake butter, boar's head ham, egg, udi's white bread toast w/apricot preserves and it took the express elevator to the sphincter. :(((((

been incredibly tired and feeling flu-like. am not a whiner normally but feeling like i have a fever when i clearly am not (97.7 is my normal body temp) i was down to 100 lbs and i am 5'8" in two months i have had a weight gain (highest was last monday 111 woohoo)

AND I AM REALLY MISSING CHEESE!!!! oh, glorious mozzerella! cheddar, i still love you! ricotta, what can i say...

oh, and also my scalp rash is making me miserable how long does that take to go away? i have been avoiding iodine (except for fish/seafood)

sorry for the poor me, boo-hoos.....


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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sorry for the poor me, boo-hoos.....

I'll pass the Kleenex!

Not sure what to tell you. The doc actually seems OK so far. He/She is working with you on a Celiac DX.


 

 

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here i am again, frustrated out of my mind. my husband says: why don't you just post what the doctor wrote. my blood test came back negative, but i expected that because i have been on the gluten-free diet since the beginning of august and just had it done last monday. so i had the endo thingy done on friday and this is what she wrote:

hiatal hernia (small), small esophageal ring, mild flattening of duodenal folds

meds: resume home meds (i take claritan d-12, loritadine 10 mg, rampiril (hypertension) every day)

other tests scheduled: no

other instructions: continue gluten-free diet

she wanted me to call her office and set up an appt w/dietitian/nutritionist and to schedule a follow-up in 3-4 months. the nurse there told me the h-pylori (sp?) was negative and also that my iron was high (???) she said my biopsy results weren't there yet only chemistry stuff (what the krap does that mean??) also ADVISED ME TO GO ON THE INTERNET b/c i can find alot more information there (REALLY???? wow, thanx..... i want my $2 back....)

i already have found out a hundred times more here than anything they told me. so here i am again......

also, having terrible digestive issues since being 'scoped' i'm racking my brain to figure out what i've eaten to make me have terrible 'D' ("no, thanx, i have to stay close to my bathroom. maybe another time......") could the test have messed me up temporarily? i mean, today i ate potatoes & mushrooms w/fake butter, boar's head ham, egg, udi's white bread toast w/apricot preserves and it took the express elevator to the sphincter. :(((((

been incredibly tired and feeling flu-like. am not a whiner normally but feeling like i have a fever when i clearly am not (97.7 is my normal body temp) i was down to 100 lbs and i am 5'8" in two months i have had a weight gain (highest was last monday 111 woohoo)

AND I AM REALLY MISSING CHEESE!!!! oh, glorious mozzerella! cheddar, i still love you! ricotta, what can i say...

oh, and also my scalp rash is making me miserable how long does that take to go away? i have been avoiding iodine (except for fish/seafood)

sorry for the poor me, boo-hoos.....

The bit I bolded about the duodonal folds is indicative of celiac. Hopefully the biopsy will be clearly positive but you do have a chance of a false negative on that if you were already gluten free.

It does take some time for DH to go away. Have you eliminated gluten from your shampoos, conditioners etc? If not you should.

Did they scope both ends? The reason I ask is because not all the flavorings they give you with the clean out stuff is gluten-free. If you didn't check with the maker before you took it that could be why your D is acting up.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I'll pass the Kleenex!

Not sure what to tell you. The doc actually seems OK so far. He/She is working with you on a Celiac DX.

thanx! between kleenex and toilet paper i am killing trees left and right :(

yes, she is really great - she thought it would be harmful to go back on gluten for the tests. also wanted to do the endo asap so as to 'catch' the symptoms. i just want to know if celiac is her diagnosis? is my insurance going to cover the dietitian without a diagnosis? probably it would help if everyone i speak with (including all hospital staff) would quit asking me, "what are you being tested for?" or "what is the doctor looking for?" while they are reading my chart. even the nurse who was reading me some of the test results.. :blink:


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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The bit I bolded about the duodonal folds is indicative of celiac. Hopefully the biopsy will be clearly positive but you do have a chance of a false negative on that if you were already gluten free.

It does take some time for DH to go away. Have you eliminated gluten from your shampoos, conditioners etc? If not you should.

Did they scope both ends? The reason I ask is because not all the flavorings they give you with the clean out stuff is gluten-free. If you didn't check with the maker before you took it that could be why your D is acting up.

ok, then! why in the world didn't she just say that? maybe she was waiting for results from the biopsy? when all of my results are in the nurse said i could have them all faxed to me so i'm going to do that, too. they only scoped one end(o) (haha) but used 2 scopes. she did a really good job, too, i hardly had a scratchy throat. i am going to check my shampoo and soap. conditioner seems ok. i was just doing so well it was CLEARLY the answer to my problems. then it seemed the diagnosis was ambiguous at best. thanx for listening to the crazy woman.

you guys rock. just so you know :)


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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Tell her you need the Celiac Dx reflected in your chart so the insurance will pay for the dietitcian and any follow-ups. While your at it, ask for an official note saying you have Celiac and must be careful with food. Mine says should bring her own food and was written on a perscription pad. I have used it to bring my own food into sports stadiums. I laminated it. :P


 

 

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THAT is a great idea :)

i am going to call them next week to see if they have my complete results and then get them. the 3-4 month appointment also threw me. i am so underweight! but i guess she is confident that the diet will work fine? these people in the dr's office are going to hate me in a hurry :) flight? or FIGHT! hmmmmmm...... <_<


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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THAT is a great idea :)

i am going to call them next week to see if they have my complete results and then get them. the 3-4 month appointment also threw me. i am so underweight! but i guess she is confident that the diet will work fine? these people in the dr's office are going to hate me in a hurry :) flight? or FIGHT! hmmmmmm...... <_<

I agree that the 3 to 4 month before your next appointment is to see how you do on the diet. It sounds like you have a good doctor who is taking into account how you respond to the diet. The fact that she did not want you to do a challenge because she did not want to make you even sicker is IMHO a good thing. I have a feeling if you respond well to the diet she is going to give you the 'formal' diagnosis. Since she told you to continue the diet she shouldn't have an issue with giving you a 'script' for the gluten free diet so that you can bring your own food when needed. Just in case she didn't mention it you should also go dairy free at first. The area that helps you digest dairy is the area that is damaged with celiac. Dropping dairy for a month or so should help you heal faster. Stick with whole unprocessed foods and do all you need to do to avoid CC, if your not already. I hope you are feeling better and gaining some of that weight back soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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thanks so much :) i think it was my hair mousse!!! or something to do with being scoped? i dunno, but it's gone. boy, y'all are not kidding - gotta watch everything. after feeling much better and having 'normal' digestion lately and healing noticeably, i guess that was my first real glutening? boy, oh boy, everything just went crazy there - didn't even realize how depressed and panicked i was until this morning when everything went back to good!

oh, and husband accidentally got 'lactaid' milk instead of 'silk' and i tried it and so far so good :) so my dreams of cheese my someday come true!?

but now i have so many more questions! this is for life. i guess one of my issues (after putting up with feeling bad for so long) about a clear diagnosis is PERMISSION TO BE SICK/PERMISSION TO TAKE CARE OF 'ME'. well, i'm giving myself permission :)

thanx again for your help!!!


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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aw, everyone needs a few minutes to let out some boo hoos every once in a while, I think. :)

also, having terrible digestive issues since being 'scoped' i'm racking my brain to figure out what i've eaten to make me have terrible 'D' ("no, thanx, i have to stay close to my bathroom. maybe another time......") could the test have messed me up temporarily? i mean, today i ate potatoes & mushrooms w/fake butter, boar's head ham, egg, udi's white bread toast w/apricot preserves and it took the express elevator to the sphincter. :(((((

Although there are so many things that could be affecting you, since you already know gluten is affecting you, assuming that some of these products might have more gluten than you can tolerate might be the easiest first step.

- I can't have any gluten free products that aren't made in a gluten free facility, or I seem to have trouble.

- Did you buy a sealed boar's head ham, or did you have it sliced at the deli? Most of the grocery stores, on-line, have warnings about the high cross contamination possibilities for any meats sliced in their deli. Kind of ironic to sell gluten-free meats that then get contaminated when they cut 'em, huh?

- the fake butter and preserves would usually do me in.

- I have heard of at least one person claiming they had a gluten issue from Udi's, but I don't know how reliable that was.

Might be worth just cutting back to things you only make yourself, from really unprocessed ingredients, and see if that helps a bit? That's what I ended up doing myself, and then we're slowly trying out more foods now. it's definitely helped a lot.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I am a rare one when it comes to Udi's bread maybe, but it gives me a reaction. Possibly due to the fact it has potato starch in it and I have a problem with the nightshade veggies. I noticed you ate the bread which has potato starch and you also ate potatoes. For me that would be a double whammy. Just a thought. Hope you get to feeling better.


Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free

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Some shampoos contain gluton..I always loved Pantene, but it cause my scalp to have itch spots..but using suave shampoo you get nothing..

here i am again, frustrated out of my mind. my husband says: why don't you just post what the doctor wrote. my blood test came back negative, but i expected that because i have been on the gluten-free diet since the beginning of august and just had it done last monday. so i had the endo thingy done on friday and this is what she wrote:

hiatal hernia (small), small esophageal ring, mild flattening of duodenal folds

meds: resume home meds (i take claritan d-12, loritadine 10 mg, rampiril (hypertension) every day)

other tests scheduled: no

other instructions: continue gluten-free diet

she wanted me to call her office and set up an appt w/dietitian/nutritionist and to schedule a follow-up in 3-4 months. the nurse there told me the h-pylori (sp?) was negative and also that my iron was high (???) she said my biopsy results weren't there yet only chemistry stuff (what the krap does that mean??) also ADVISED ME TO GO ON THE INTERNET b/c i can find alot more information there (REALLY???? wow, thanx..... i want my $2 back....)

i already have found out a hundred times more here than anything they told me. so here i am again......

also, having terrible digestive issues since being 'scoped' i'm racking my brain to figure out what i've eaten to make me have terrible 'D' ("no, thanx, i have to stay close to my bathroom. maybe another time......") could the test have messed me up temporarily? i mean, today i ate potatoes & mushrooms w/fake butter, boar's head ham, egg, udi's white bread toast w/apricot preserves and it took the express elevator to the sphincter. :(((((

been incredibly tired and feeling flu-like. am not a whiner normally but feeling like i have a fever when i clearly am not (97.7 is my normal body temp) i was down to 100 lbs and i am 5'8" in two months i have had a weight gain (highest was last monday 111 woohoo)

AND I AM REALLY MISSING CHEESE!!!! oh, glorious mozzerella! cheddar, i still love you! ricotta, what can i say...

oh, and also my scalp rash is making me miserable how long does that take to go away? i have been avoiding iodine (except for fish/seafood)

sorry for the poor me, boo-hoos.....

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