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

By Marlene
in Doctors

Recommended Posts

Marlene Contributor
Marlene
Posted

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
Ursa Major
Posted

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
sillyyak
Posted

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

happygirl Collaborator
happygirl
Posted

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
CarlaB
Posted

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
par18
Posted
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
Terch
Posted

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
Marlene
Posted
  • Author
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,019
    • Most Online (within 30 mins)
      7,748
    Wilson1984
    Newest Member
    Wilson1984
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.