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

Went To See Specialist Yesterday


Marlene

Recommended Posts

Marlene Contributor

I went back to see my GI specialist for the first time since getting back results from Enterolab. I showed him the test results from Enterolab and his exact words were "Well, we can't argue with that! Congratulations for digging deeper and finding some answers." At this point I didn't know whether to smack him or not. After all, isn't finding answers supposed to be his job?? He had never heard of Enterolab but seemed quite positive after I explained how they do their testing etc. He now acknowledges that I am gluten/casein intolerant and said he was not going to do any further testing. He is also going to let my GP know the results so it will be in my records. He suggested I might want to get a medic alert bracelet. I found that quite interesting.

Me again. I didn't finish my last thread, pushed enter and it posted. OOoops. Anyway, I just wanted to let my experiences because I know how difficult it can be to deal with the whole medical system. BTW, I am in Brantford, Ontario. (just in case anyone is looking for a doctor in this area). Sorry for the "split posting". Marlene


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Well, even though your GI should have figured it out, rather than you having to spend all the money on Enterolab, at least he recognizes the validity of your test results. Not many doctors will do that. So, I say, 'way to go!'. You must be relieved.

sillyyak Enthusiast

Why do you think he recommended a medic alert bracelet? Does anyone else on here wear one?

happygirl Collaborator

Unless you have anaphylactic reactions to gluten and casein (which would be more of an allergy than Celiac/intolerance), you might not need one. Some people with intolerances do get them though, esp if thy are corn intolerant (because IVs have corn derivatives). However, I would say the vast majority of people on a gluten-free/cf diet do NOT have medic alert bracelets.

CarlaB Enthusiast

I don't have a bracelet. IMO, if I'm in that bad of shape, I want them to do whatever they can ... if I get glutened along the way, so be it!! The only use I can see for a bracelet is for a very young child for information to pre-school teachers, etc.

par18 Apprentice
Why do you think he recommended a medic alert bracelet? Does anyone else on here wear one?

Actually yes. I got a cheap one through Walgreen's (about $10) that goes around my neck. You can put whatever information on it you want. The way I see it what harm could it do. If nothing else it could increase awareness.

Tom

Terch Apprentice

Hi,

I am in Waterloo Ontario. I was wondering if you had the endoscopy? I had one 3 weeks ago and still haven't heard anything. Also, I was interested in trying Enterolab but wasn't sure about it since I live in Canada. What courier service did you use? And how expensive was it? Also what tests did you decide to get? Sorry for all the questions, just excited that someone from Ontario used Enterolab. What symptoms did you have?

Thanks Terch

[


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



Celiac.com Sponsor (A8-M):



Marlene Contributor
Hi,

I am in Waterloo Ontario. I was wondering if you had the endoscopy? I had one 3 weeks ago and still haven't heard anything. Also, I was interested in trying Enterolab but wasn't sure about it since I live in Canada. What courier service did you use? And how expensive was it? Also what tests did you decide to get? Sorry for all the questions, just excited that someone from Ontario used Enterolab. What symptoms did you have?

Thanks Terch

[

Hi Terch. Not sure if I am replying to this properly since I am still trying to figure out how to use these threads. Anyway, I did not have the endoscopy. I have had every test imaginable but not that one. I had the blood test which came back negative. I went gluten free anyways and noticed real improvement. That's when I decided to go through Enterolab. I got the $369 test which is US Funds. I used Fedex overnight to ship my samples back and it cost me $68. (I was not impressed with that!) As far as my symptoms goes, I was diagnosed with IBS about 18 years ago. I made some modifications to my diet which did help somewhat. About 12 years ago I became lactose intolerant (that's what I thought anyway but it turns out that it's casein which bothers me meaning I should not have dairy at all). About 3 1/2 years ago, I had a bout of diahrea that least 6 weeks. After the six weeks, things just never went back to "normal". That's when I started having test after test. Finally, this past January they tested my gall bladder which was malfunctioning (this is a symptom of gluten intolerance but Dr's don't know that). I had my gall bladder removed and became much worse. I lost even more weight and looked like a walking corpse. Someone mentioned Celiac to me and that's when I started looking into the whole gluten thing. My other symptoms have been nausea, gas, bloating, bulky smelly floating stools, loose stools, fatigue, depression, headaches, night terrors, brain fog. Some of these have cleared up completely since going gluten free and some have gotten a lot better. Hope you find the answers you are looking for. I would definitely do Enterolab. The fact that they do gene testing as well is so helpful and confirming. Take care, Marlene

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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    2. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    5. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
×
×
  • 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.