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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    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

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.