Jump to content

  • 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

My Doc's Clinical Impression ?

notme

Recommended Posts

notme Experienced
notme
Posted

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.....

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

notme Experienced
notme
Posted
  • Author

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:

notme Experienced
notme
Posted
  • Author

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 :)

kareng Grand Master
kareng
Posted

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

notme Experienced
notme
Posted
  • Author

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...... <_<

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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.

notme Experienced
notme
Posted
  • Author

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!!!

T.H. Community Regular
T.H.
Posted

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.

txplowgirl Enthusiast
txplowgirl
Posted

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.

  • 1 year later...
marjean Newbie
marjean
Posted

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.....

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    3. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.