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

Nervous, Nervous, Nervous!


penguin

Recommended Posts

penguin Community Regular

Why am I so nervous about an effin' doctors appt? This is a new GI doc, the last one I saw two years ago was a total toolbox. :rolleyes: I don't like dentists for the same reason, one (ok two) bad apples in the bunch ruined the whole business of apples.

Apparently this one knows something about celiac, but I'm afraid he'll think I'm nuts! Of course, I have a doctor that actually diagnosed me celiac, but she didn't order an endo or anything. I have this big long list of symptoms and stuff, as much for me as for him, since I tend to forget things at dr appts. I'm going togive it to him along with copies of records from Dr. GI Toolbox and my most recent bloodwork. Here's what it says (sorry for yucky details):

As a child:

 GI workup around age 7, everything normal, stomachaches attributed to stress from siblings going to college

 Vomiting in the middle of the night (about every month)

As an adult:

 Mononucleosis summer 2002, sick for two months

 Beginning the following fall, diarrhea almost daily to present

 On-and-off anemia, elevated platelets

 Fall 2003- pyloric spasms start (ranging from weekly to every few months), no cause found after upper GI, ultrasound, and EGD

 Small ulcer found during EGD, attributed to heavy NSAID use. Treated with 60 day course of nexium. Didn’t effect spasms or diarrhea.

 Avoided oranges, tomatoes, and other acidic foods. Spasms happened anyway.

 Several h.pylori blood tests negative (taken about once a year)

 Spasm symptoms: moderate/severe abdominal pain, nausea, vomiting

 Spasms formerly treated with hydrocodone, levsinex, now treated with bentyl and phenergan

 Diagnosed with IBS, told to eat more whole grains. Didn’t help, made diarrhea worse.

 Celiac Panel in 1/06 – Only IgG comes out positive

 Gluten-free for four months, had some improvements

 Dr. Bartos makes Celiac diagnosis 2/24/06 after 3 weeks gluten-free

 Allergy testing 3/06, no food allergies

 Back on gluten 5/19/06

 Currently taking daily: Prilosec, Kariva. As needed: Bentyl, phenergan

 Other symptoms (GI or Otherwise):

o Heartburn

o Flu-like muscle aches (no fever)

o Facial numbness

o Lack of concentration (Spaced-out feeling)

o Feeling of intoxication

o Mouth sores (painful white patches)

o Foul gas

o Foul stools

o Lightly colored stools (from bright/pale yellow to orange)

o Loose stools (often bulky)

o Mucus in the stools

o Passing undigested food (especially vegetables and fruits, cooked or raw)

o Problems drinking milk, but cheeses and yogurt ok

o Tingling in hands and toes

o Tingling in the scalp (feels like my hair is falling out?)

o Lower abdominal cramping

o Charley horses (hereditary, have them at least once a week)

o Fatigue

o Gas and bloating

Um...anything else I should include? Am I nuts? I'm flipping out!


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



Celiac.com Sponsor (A8-M):



Matilda Enthusiast

..

Felidae Enthusiast

I know what you mean about having one bad doctor or dentist and then you always worry that the new ones will be bad too. Pretty comprehensive and I agree with Matilda add how the gluten challenge affected you.

Good luck with your appointment.

jerseyangel Proficient

Chelsea--Sounds like you are well prepared for your appt. I completely understand why you are nervous, but try to keep an open mind where the doctor is concerned. (I can't believe I actually said that!!) But really. I hope that it goes well and that he's not a toolbox :D I'll be anxious to hear what he has to say--

flagbabyds Collaborator

thats a really long list!

i think that you are well enough prepared.

TCA Contributor

I love being prepared. You sound like you're ready! Good luck!

penguin Community Regular

I leave for my appointment in about 45 minutes. I can't eat anything because my stomach hurts, which is good in a way, at least I'm going to the right kind of doctor for that.

I won't eat because I can't get over the fact that I've gained 16 lbs since May 19th! Very few of my clothes fit me. I haven't weighed this much since high school. Why on Earth would someone gain weight that fast? :unsure:

That's like, 5 lbs a week?!

I don't know what to do...


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



Celiac.com Sponsor (A8-M):



Guest nini

good luck, definitely mention how going back on gluten has affected you. This is VERY important.

also, right before my dx, I gaine about 30 pounds in a matter of WEEKS... yep... was a very sick puppy... so while 5 pounds in a week seems a lot, it isn't as bad as it could be! I was literally gaining 10 pounds a week... keep us posted!

jerseyangel Proficient
I leave for my appointment in about 45 minutes. I can't eat anything because my stomach hurts, which is good in a way, at least I'm going to the right kind of doctor for that.

I know that feeling so well...hopefully in an hour or two, you'll feel relieved and have some answers. It's gonna be ok :)

fanny Apprentice

Good luck and stay strong.

I'm having my second endoscope next month and I nervous about that I hope that my villi are healing.

Archived

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

  • 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. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - 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?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748

    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @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
      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
      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
      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    
×
×
  • 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.