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

Ok .,..while I Love My Gp ..even Drs Dont Know Everything And Can Learn From There Patients Sometimes !

BillJ

By BillJ
in Doctors

Recommended Posts

BillJ Rookie
BillJ
Posted

OK So here is the long version ! In november of 2009 I was going thru the process of getting my insurance to approve gastric bypass surgery . Part of the process the surgeon sent me to a gastroenterologist for and upper endoscopy to see if my acid refulx had caused any damage which turns out was one of the best things that ever would have happened to me as when he did it he found my intestinal villi are all word down and did all the blood work and DNA testing that confirmed not only did I have celiacs but I got the gene from both my parents.

OK ..Now part 2 of the story ..For the last 5 years or so I have been dealing with severe sciatica which of course was always blamed on my weight which did make sense as I was almost 400 lbs ...

Well I have my surgery and was in some pain after wards and was just taking my normal meds for my back to deal with the surgery pain .....Well after gastric bypass surgery you are on a liquid diet for the first 6 weeks ....Which as we know for the most part liquids are gluten free ...Well 5 days after my surgery I noticed the strangest thing ..My insides still hurt some but if I was laying down I was fine ...But my back didnt hurt anymore ... How is this possible ? Well I did lose almost 30 pounds in the first week but That shouldnt cause such a drastic change .....So time goes on an I am still fairly pain free taking the occastional pain pill but we are talking over 4 months I only took the amount of pain medication I took in 1 ! HOLY CRAP BATMAN !Could the torture be over !Well it never occurred to me it could be the celiacs ...Thats is an intestinal problem ! This is my back .....Well at 16 weeks you can pretty much start eating most everything but just a good balanced diet.

OK so now we fast forward 18 months and 130 pounds lost ! And my back hurts more than it did at almost 400 pounds ! ...So yes At 260 pounds my back was worse off than it was at 400 ! How can this be ? Did I really have 20k in surgery and actually am in more pain than I was ?

So dawn breaks on Block head and I think back to that period when after my surgery and what was different than now ...Wait ..I was only drinking fluid and soft stuff like mashed potatoes and jello and stuff like that ...WAIT I WAS GLUTEN FREE ! So I make and appointment with my GP and I tell him you know i noticed that when I was gluten free that my back didnt hurt...And I remembered that the gastrointerologist said that Celiacs symptoms can cause arthritis type symptoms ....I say ..So what do you think ?? He says Nope cant be it ...You would not be in this much pain .....

Well I am 6 days gluten free and Yesterday I was up for 40 hours straight as I had to camp out to get my daughter registered for school and had to wait in line ....So you would think My immune system a my back would just be killing me due to fatigue ...I DID NOT TAKE ON PAIN PILL YESTERDAY ! And we are not talking I take a vicodine in the morning and 1 at night ... I take a 20mg OXYCONTIN in the morning and 1 at Night ....And 4 5mg percocet inbetween for break thru pain .....And I took nothing yesterday .....

Gee could it be a coincidence that the week I go gluten free that my pain is down to where I can actually tolerate it without meds and I feel like I could run a marathon ....And a a nice little bonus ! I have lost 8 pounds this week !

I am not going to go running to him just yet as I want to give it some time to see if it stays like this before I turn in my prescription bottle ! But things are looking up !

And no I will not smack him for this error in judgments he did care for me thru my pain and has been very dilegent about check with me about pain meds and caring about me ..He even very meekly asked me ...Dont be offended ..But I have to ask "Are you selling these meds or taking them just to get high? " While at first I was kind of offended ...But then I though..You know ..it couldnt have been easy to ask a guy my size questions like that and I could tell he really cared ! And as we know Dr do PRACTICE medicine ...Things are not all black and white ...There are literally I 100's of things that cause back pain and I was severely overweight ! I think the other reason he didn't give celiacs a second though is ...I have ZERO intestinal symptoms due to my celiacs ....I never would have found out if I had not had my surgery and had went in for that Upper endoscopy ...... I will make an appointment to see my Gastro DR ...not because I need to ...... But I want to shake his hand and thank him for giving me my life back!! Hello My Name is Bill and I am Gluten FREE and Proud of it !

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I'm confused. If you were diagnosed as celiac why did you ever go back to eating gluten? Did your dr not tell you to go gluten free as part of your diagnosis? You also got pretty bad guidence in the weight-loss department. Don't get me wrong and all it's great that you have lost so much so fast! BUT the weight loss might have come anyway if you went gluten free without the surgery--provided you ate healthy gltuen free stuff and not all the sugar/starch laden gluten-free subs. Just to be clear, I'm not criticizing you for having the surgery at all--I'm saying your drs gave you very poor advice. I'm glad you discovered on your own how bad gltuen is for you. Your dr doesn't know what he talking about at all when he says it couldn't cause that much pain. I was bedbound with pain before going gluten free. I didn't really have gastro problems prior to going gluten free. I had joint pain and muscle pain though. My pain was so bad they wanted to diagnose me with fibromyalsia or RA even though my tests for those things were negative.

kareng Grand Master
kareng
Posted

Congrats on the weight loss! I see you have figured out the need to be gluten-free even without the gastric manifestations. I have some friends who have had the surgery and you can't eat a lot of carbs anyway.

mushroom Proficient
mushroom
Posted

Do not shake that gastro's hand!! Kick his butt for not telling you that celiacs MUST NOT eat gluten. :ph34r:

BillJ Rookie
BillJ
Posted
  • Author

He did tell me that Celiacs cannot eat gluten ...But I had just had gastric bypass surgery and I was already so restricted so much I CHOSE to wait to get thru the first year of weight loss and now I am tackling my new gluten free life ! Taking on both would have just been setting myself up for disaster ...As the Dr told me ..I would actually be better off if I had more symptoms as it would have forced my hand in making the change but with the exception of my back I have no other symptoms ....

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      10

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Re: Michelin star. To give an example, the Ritz Hotel in London has two Michelin stars. Here's another article about Michelin stars - from our own archive.
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Insomnia help

      Very helpful @knitty kitty. Thank you. I am trying to remember what vitamin so alarmed my GP and I have a feeling it was A or E. I remember reading the pills contained well over the 100 per cent RDA of whatever the vitamin was. One thing I'd love to ask you that has always intrigued me. One day when my anxiety was completely through the roof...
    3. cristiana
      - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      10

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      @trents Good question. We are strict at home, although I have to admit I've eating the odd chocolate at Christmas that turned out to have been made in a shared facility. But that is very unusual for me, and I had my last blood test before Christmas anyway. Therefore I have concluded that eating out must be the issue. But I'll let you know in September...
    4. melthebell
      - melthebell replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all. Will also run the HLA typing - I have the swabs ready to go.
    5. trents
      - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,498
    • Most Online (within 30 mins)
      7,748
    genliu
    Newest Member
    genliu
    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

    • cristiana
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By cristiana · Posted

      Re: Michelin star.  To give an example, the Ritz Hotel in London has two Michelin stars.   Here's another article about Michelin stars - from our own archive.  
    • cristiana
      Insomnia help

      By cristiana · Posted

      Very helpful @knitty kitty.  Thank you.  I am trying to remember what vitamin so alarmed my GP and I have a feeling it was A or E.  I remember reading the pills contained well over the 100 per cent RDA of whatever the vitamin was. One thing I'd love to ask you that has always intrigued me.  One day when my anxiety was completely through the roof.  I 'felt the fear and did it anyway' - a phrase other anxiety sufferers may be aware of, which I found a powerful tool in my recovery -  and visited a friend's house, even though I felt so wretched.  For some reason I craved milk and drank two whole pints of milk in quick succession while I was with her - to this day I can't think why, because I don't usually drink milk 'neat' - I like it in tea or coffee, or hot chocolate.  But I distinctly remember within a couple of hours feeling absolutely fine again for quite a while.  I've often wondered was it down to this milk, which I've since understood contains quite decent levels of B12.  Would that have really worked so fast?    
    • cristiana
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By cristiana · Posted

      @trents  Good question.  We are strict at home, although I have to admit I've eating the odd chocolate at Christmas that turned out to have been made in a shared facility.  But that  is very unusual for me, and I had my last blood test before Christmas anyway.  Therefore I have concluded that eating out must be the issue.  But I'll let you know in September when I have my next blood tests done.  😊  
    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all.  Will also run the HLA typing - I have the swabs ready to go.
    • trents
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By trents · Posted

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
×
×
  • 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.