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. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      2

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      I understand why that feels frustrating, because the labeling can definitely seem confusing. In the case of products like King Arthur’s gluten-free bread flour that contain gluten-free wheat starch, the wheat starch has been specially processed to remove the gluten proteins that trigger celiac disease. Because it originates from wheat, U.S. labeling laws s...
    2. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Doctors
      7

      Second chance

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should...
    3. Russ H
      - Russ H replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Concerning GP advice

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the...
    4. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      2

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Exactly. What about King Arthur gluten free flour selling a gluten free bread flour containing “gluten free wheat starch” and says in allergens “contains wheat.” I don’t care if it contains a trace amount of wheat ok’ed by the food industry. For a celiac…100% gluten free and that’s all is acceptable. Hard alcohols and ciders and hard seltzers say gluten free...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Doctors
      7

      Second chance

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,645
    • Most Online (within 30 mins)
      7,748
    Rosannerosannadanna
    Newest Member
    Rosannerosannadanna
    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

    • Scott Adams
      Second chance

      By Scott Adams · Posted

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      Concerning GP advice

      By Russ H · Posted

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and 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.