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

Gi Doc Scheduled Endo 5 Weeks From Now, Is That Routine?


Homegirl

Recommended Posts

Homegirl Apprentice

I expected it to be scheduled sooner. I am tired of the wondering and feeling bad. If this is Celiac, I want off gluten as soon as possible!


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient
I expected it to be scheduled sooner. I am tired of the wondering and feeling bad. If this is Celiac, I want off gluten as soon as possible!

I know it can be hard to wait--I had to wait 4 weeks--I think it just depends on the surgery center or clinic you go to and how they schedule.

Guest nini

was your blood work positive for Celiac?

lovegrov Collaborator

Frustrating but not real unusual. I got mine quickly only because I was so sick I was in the hospital. Otherwise, it would have been weeks.

richard

happygirl Collaborator

hey homegirl :D

Unfortunately, that is a pretty standard response. I was extremely sick, got the positive bloodwork, and scheduled the endo 5 weeks later too! I knew nothing about celiac disease and the Dr. told me it was ok to start the gluten free diet (which I know now is 100% incorrect.) which led to a negative biopsy. Go figure!

I would say your choices are to call the dr. back and talk to his nurse and the stress the importance of getting in sooner. Otherwise, we'll keep you in our thoughts for the next 5 weeks!

penguin Community Regular

Mine isn't until the end of August, but that's what I needed so that I'd be eating wheat for 3 months. Otherwise it would have been 2 weeks, but that's because my gastro's practice runs the game in town and they have like, 3 endo centers.

In most places that doesn't happen. When I had an endo before, I had to wait 2 and a half months. It all depends on where you are and how packed the facilities are.

Make sure you keep eating lots of gluten until then!

Homegirl Apprentice
was your blood work positive for Celiac?

It was inconclusive because my IgA was below normal which evidentally can cause false negatives. I have been struggling to get through the day because of fatigue and brain fog. I have hypothyroidism and low ferritin. I have had numerous gastro symptoms since an infant when I was put through many tests and found to have an enzyme deficiency. I have had painful diarrhea all my life, the kind that I have to use natural childbirth techniques to get through, but not near as much as when I was younger. The doctor's thought I just couldn't digest fat. Now I have IBS symptoms and this major bloating where I feel like I have something pressing against my ribs and my insides are knotting up. My grandfather is from Ireland and grandmother is from Scotland and my grandfather,mother, and uncle all have/had painful diarrhea. A few years ago I went off wheat for two weeks and felt great. I grind my own wheat and make my own bread. I eat wheat probably everyday so I think I have that covered. My only concern is that I am taking aloe to treat cervical dysplasia and prevent cancer. I have to go for a cervical biopsy in August too so I don't want to stop taking the aloe, but then I don't want it to interfere with the intestinal biopsy.

Edited to say that maybe I shouldn't worry about the aloe because my symptoms haven't gotten any better since I have been taking it.


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



Celiac.com Sponsor (A8-M):



Guest nini

see if they can't get you in sooner, and definitely DO NOT stop eating gluten before your biopsy, HOWEVER, as soon as they are done with the biopsy, REGARDLESS of the results, go ahead and start the gluten-free diet immediately after you get home from the biopsy... Use the time between now and then to learn as many of the ins and outs of this diet as you can possibly learn, and also stock up on some gluten free treats to get you through the first few weeks or months on the diet so that you do not find yourself starving with nothing to eat...

normally I tell people the biopsy is not necessary, and I still don't think it is, because positive dietary response is the most valid indicator of whether or not you are gluten intolerant, but I think in your case, especially because your blood work was inconclusive, you probably need to know if there is any damage and if so, how much... but I'm gonna guess that even if the Dr.s don't find any damage, that if you cut gluten out of your diet, you will find your symptoms greatly improved (I base this on your comment about previously having success with removing just wheat from your diet)... good luck and feel free to ask any questions.

Lister Rising Star

if you fly down to oregon, the center here where i live gets people in days after asking, i guess its a regonal medical center now so they have lots of additional trained staff and equipment

wolfie Enthusiast

Sounds pretty routine to me. DS can't even get his intitial appt with the GI until Aug 15th (9 weeks after his highly positive bloodwork came back). If they schedule his endo out that far after waiting that long to get in, I will have to start kicking some butt.

In the meantime, load up on the gluten and learn about the gluten-free diet. This is a great place to learn.

Homegirl Apprentice
Sounds pretty routine to me. DS can't even get his intitial appt with the GI until Aug 15th (9 weeks after his highly positive bloodwork came back). If they schedule his endo out that far after waiting that long to get in, I will have to start kicking some butt
Wow, 9 weeks?! I guess I shouldn't complain. I hope you guys get answers soon!

if you fly down to oregon, the center here where i live gets people in days after asking, i guess its a regonal medical center now so they have lots of additional trained staff and equipment

Too bad the doc I am seeing in Chattanooga, TN can't do it in days. I am thinking about looking around at different doctors.

REGARDLESS of the results, go ahead and start the gluten-free diet immediately after you get home from the biopsy... Use the time between now and then to learn as many of the ins and outs of this diet as you can possibly learn, and also stock up on some gluten free treats to get you through the first few weeks or months on the diet so that you do not find yourself starving with nothing to eat...
Good advice, thanks!
Lisa Mentor

Hey babe,

If you feel that you need to be checked sooner, put your foot down and say that you are in urgent discomfort and need to make an appointment asap. If you get non responsive, try another gastro dr.

Today, they they get one in and one out, one in and one out....we are just rolled in and rolled out and they make so damn much money and don't even talk to us or advise. What ever happened to doctors that gave a **** about the person that they gave an oath to help.

Sorry to digress....call you dr. and insist that you have an appointment at the earliest possible time. Don't take no for an answer. They know how to work things out.

But, best of luck. It is always good to have a name to call you inflictions. But trial by success is also good.

Hope this will help. Lisa

par18 Explorer
I expected it to be scheduled sooner. I am tired of the wondering and feeling bad. If this is Celiac, I want off gluten as soon as possible!

Hi,

It only took me 2 days to get "scoped". The reason it was two and not one was I had a CT scan the day after seeing GI and then the upper and lower scope the day after that. It was only 7 days after seeing GI for the first and only time until I got official Celiac diagnosis. I had pretty severe symptoms so maybe it was easy to diagnose. If someone would have told me I could try a gluten free diet to see what happened I might never have been in the condition that I was. I'm fine now. I don't think I would eat gluten for 5 weeks just to be officially diagnosed if I thought I could go gluten free now and feel better. Have you tried the diet and if so what was your reaction?

Tom

Homegirl Apprentice
Have you tried the diet and if so what was your reaction?

Probably about four years ago I was having some pelvic discomfort and IBS symptoms and went on a pure fruit and veggie diet for two weeks before my colonoscopy. I had lots of energy and felt great. When the colonoscopy came back fine, I went back to eating meat, dairy and grains too. I don't know if it was the dairy or the grains. I really want to make sure wether or not I have it and if I have any damage since I have been having issues since infancy. I also have four kids and if I test positive, I am going to pursue tests for them although they haven't had the pain I have. I would put my whole family on a gluten free diet, so I don't want to do something drastic if I don't have to, KWIM?

Guest nini

there seems to be a common misconception that the gluten-free diet is "drastic"... It really doesn't have to be. To be honest, the diet that most people in "civilized society" subsist on is pure crap, and if you go to a diet of naturally gluten-free foods, like fresh fruits and veggies, clean meats, potatoes, rice and so on... you can eat a wide variety of healthy foods without doing somethg "drastic" and no one has to be the wiser...

kbtoyssni Contributor

You can also call every day or two and see if there are any cancellations that they could slot you into. You might also try having your doctor call the GI and ask for a more urgent appointment. I did that once and got in a week later instead of having to wait six weeks.

Lister Rising Star

jeeez the wait some oof u had to do even with positive blood work, i had negative blood work and they were still able to penicl me in the day after, of course it was just a talk with the gi specialist not a endo, but still man your guys waits seem way way to long

rinne Apprentice

I saw the Gastro in early May and the scope is scheduled for late September which is nearly five months, welcome to Canada's healthcare system. :angry: I hadn't been eating gluten for months, other than a small amount of soy sauce that had wheat in it, and my blood work came back negative. I am not eating gluten and do not expect to have a confirmation of Celiac through the biopsy but will do it to rule out other possiblities. What I have learned here is that what they diagnose is damage and no sign of damage does not mean that you don't have Celiac it just means that you are not at the 3rd stage, out of 4, of damage.

So, I would say not matter the diagnosis trust your gut.

Guest Robbin

Hi, I agree with nini's statement regarding the "drastic diet" Is it anymore drastic than a diabetic diet , adkins diet, or a vegetarian diet? It is just the irrational belief-system of the medical community that seems to do anything to prevent a dx of celiac, much to the detriment of the patient.

Regarding the Canadian health system--U.S. is not any better- my son has a pediatric gastro appt. in late August--scheduled in May too. We have to travel 2 1/2 hrs and stay overnight. ( Don't get me wrong-I am glad to do it for my child, but geez ) Take care and I wish you good luck.

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. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

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

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

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

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

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

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,359
    • Most Online (within 30 mins)
      7,748

    Atlanta GF
    Newest Member
    Atlanta GF
    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

    • SilkieFairy
      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • 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.  
×
×
  • 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.