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
      131,944
    • Most Online (within 30 mins)
      7,748
    Lori Beller
    Newest Member
    Lori Beller
    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

    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By knitty kitty · Posted

      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
×
×
  • 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.