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

Need To Vent


CarrieBoo

Recommended Posts

CarrieBoo Rookie

The health system where I live in Canada is irritating me...I had my blood test over a month ago and have not recieved the results. I tried phone and noone returns my phone calls (however, the dr. said if it were negative I would not recieve a phone call). I would be very surprised if it were negative, however I haven't recieved a phone call!! I have been eating gluten free and feeling great, then when I have something that makes me ill (stomach pain, body aches, headache, nausea, etc. etc. ) I later realize that it did/may have contained gluten...then for the next few days it seems that I get bloated/gassy/sick after whatever I eat (gluten-free). It somewhat obvious to me then that I should avoid gluten, however for some reason I know it would make me feel better if I had an official diagnosis.

I cannot get in to see my doctor for another month (there is almost always this long of a wait)! BUT I can't wait this long feeling sick! I recently had my ADs increased cause of some of my symptoms (exhaustion and depression) but they haven't seemed to do much for me...I am so irritated and depressed that almost everything I eat makes me feel sick, and for days...sorry for the self-pity, I am just so tired...


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



Celiac.com Sponsor (A8-M):



mamatide Enthusiast
The health system where I live in Canada is irritating me...I had my blood test over a month ago and have not recieved the results. I tried phone and noone returns my phone calls (however, the dr. said if it were negative I would not recieve a phone call). I would be very surprised if it were negative, however I haven't recieved a phone call!! I have been eating gluten free and feeling great, then when I have something that makes me ill (stomach pain, body aches, headache, nausea, etc. etc. ) I later realize that it did/may have contained gluten...then for the next few days it seems that I get bloated/gassy/sick after whatever I eat (gluten-free). It somewhat obvious to me then that I should avoid gluten, however for some reason I know it would make me feel better if I had an official diagnosis.

I cannot get in to see my doctor for another month (there is almost always this long of a wait)! BUT I can't wait this long feeling sick! I recently had my ADs increased cause of some of my symptoms (exhaustion and depression) but they haven't seemed to do much for me...I am so irritated and depressed that almost everything I eat makes me feel sick, and for days...sorry for the self-pity, I am just so tired...

I could have written this post! Not that it's going to make you feel much better knowing that. I have an appt with my GP on Wednesday and I just *know* that it's going to take forever to get a biopsy scheduled = My dd is on a gluten-free diet because I couldn't wait for the delay in getting in to see a Ped.Gastro... and because I've been eating very little if any gluten I was positively doubled-over in pain yesterday after eating regular macaroni. Runs, pains, chills, fog and exhausted.

It's so frustrating and I'm almost positive that gluten-free would make me feel so much better but I just hate to self-diagnose.

I hope you can get some answers soon. Poor you :o(

mamatide (also in Canada)

nikki-uk Enthusiast

Hey,it's not just your health system.here in the U.K it's not much better!!

It took 12 weeks for me to get my son's blood results back (they were borderline)

So I asked for a paediatric G.I referral-and I finally got one for November.(that's an 8month wait!)

Time lapsed since I first asked for a blood test so far 15months!

I might add I've made loads of phone calls in between to try and speed things up!

My Mum's intuition is that he's got it,and I just want to get a proper diagnosis for him,but I get the feeling that as my son's not wasting away and unconscious from dehydration the medics don't take me very seriously <_<

Anyway,-I hope you get some answers soon-didn't mean to hijack your rant!! :)

jerseyangel Proficient

Carrie, Mamatide and Nikki--I'm so sorry that you have to go through those long wait times. It's not enough that you or a loved one is sick, and you're desparate to find out why--it is so unfair the way you have to wait so long for an appt. You are all in my thoughts :)

CarrieBoo Rookie

Thanks for the support!

Time lapsed since I first asked for a blood test so far 15months!

WOW Nikki, I mean I know the health system is a busy place but this is way too long, especially with celiac since it can lead to malnutrition, among other things!! I would have thought the UK have a better health system than Canada....don't look that way now. Since ours is funded by government it doesn't recieve enough money to hire the staff and purchase the equipment that are desperately needed, hence the long wait times for everything.

Perhaps my test results havent been recieved yet, but I've called a few times and noone is returning my calls...frustrating.

penguin Community Regular

Makes you wish you could be in the French health system, eh?

At least you aren't in the states where you can see any doctor instantly, but you'll pay out the nose for it.

CarrieBoo Rookie

Funny, I actually just got the call from my Dr...So it seems I have a normal blood test for celiac...since I have reactions to gluten items he suggested gluten-free until I go see him the end of the month...so what now...I get no answers, but hopefully can follow the diet without getting sick again...thanks for listening


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



Celiac.com Sponsor (A8-M):



Felidae Enthusiast
The health system where I live in Canada is irritating me...I had my blood test over a month ago and have not recieved the results. I tried phone and noone returns my phone calls (however, the dr. said if it were negative I would not recieve a phone call). I would be very surprised if it were negative, however I haven't recieved a phone call!! I have been eating gluten free and feeling great, then when I have something that makes me ill (stomach pain, body aches, headache, nausea, etc. etc. ) I later realize that it did/may have contained gluten...then for the next few days it seems that I get bloated/gassy/sick after whatever I eat (gluten-free). It somewhat obvious to me then that I should avoid gluten, however for some reason I know it would make me feel better if I had an official diagnosis.

I cannot get in to see my doctor for another month (there is almost always this long of a wait)! BUT I can't wait this long feeling sick! I recently had my ADs increased cause of some of my symptoms (exhaustion and depression) but they haven't seemed to do much for me...I am so irritated and depressed that almost everything I eat makes me feel sick, and for days...sorry for the self-pity, I am just so tired...

That's crazy. Blood tests only take about 48 hours before we get the results here. That's a huge discrepancy between the provinces. Suprise, suprise!

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.

    5. - 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?

  • 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.