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

Recommended Posts

BillJ Rookie

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

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

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

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

BillJ Rookie

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.

  • 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. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      16

      Diagnosed Marsh stage 3C in January 2026

    2. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      319

      Terrible Neurological Symptoms

    3. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      319

      Terrible Neurological Symptoms

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      319

      Terrible Neurological Symptoms

    5. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      319

      Terrible Neurological Symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,590
    • Most Online (within 30 mins)
      7,748

    Danny Mc
    Newest Member
    Danny Mc
    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

    • Known1
      @knitty kitty Holy smokes, that Life Extension B-Complex is burning me up.  My multi-vitamin already has 25mg of Niacin.  The b-complex adds another 100mg on top of that.  My face, neck, and ears look like the Cardinal I use for my profile pic.  I have been on the b-complex for 10-days now and it seems to get a bit worse with each passing day.  I think I am going to drop down to taking 1/2 of the serving size.  In other words, 1 capsule instead of 2.  Hopefully dropping to one does the trick. Have you noticed any side effects from that B-complex?  It is WAY over the daily recommended values: Thanks for your time, Known1
    • HectorConvector
      Evidence from normoglycaemic studies shows that healthy people peak at ~1 hour, and they then return to baseline in 2–3 hours, not 1. CGM shows normal post-meal rises even in metabolically healthy subjects. Clinical tests use the 2-hour value to judge normal glucose clearance. Therefore the 1-hour-back-to-fasting claim contradicts both physiology and clinical diagnostic standards.
    • HectorConvector
      I'm not sure what you're referring to as "normal" here - and is this something your doctor has mentioned (in bold)? As that isn't what any study or official information says. According to diabetes UK and the British Heart Foundation, normal fasting blood sugar is 4.9-5.4mmol/L. Normal by 2 hours from the start of a meal is anywhere below 7.8mmol/L. Random (more than 2 hours after a meal) should be below 5.6mmol/L.  Not in any study of normoglyceamic individuals does blood sugar go down to less than 5.4mmol/L one hour from the start of a meal, and I don't see such numbers being considered a limit for one hour post prandial in any official definition of normal blood sugar ranges anywhere. It is basically impossible even for the most metabolically healthy individual to have a blood sugar level anything like a fasting number 1 hour only after eating a high carb meal. This is also why medical standards use the 2-hour postprandial value, not 1 hour. Blood sugar normally spikes at about 1 hour after a high carb meal.  For example this study shows that young, healthy normoglycaemic people experience a 1hr peak blood sugar level of about 6.5-7mmol/L before which the 2hr number returns to about 4.7mmol/L, slightly higher than the fasting number of that morning. https://pmc.ncbi.nlm.nih.gov/articles/PMC2769652/?utm_source=chatgpt.com Even a normal person isn't going to be seeing essentially fasting blood sugar numbers after any meal except for one with 0 carbohdrates contents.
    • HectorConvector
      My skin biopsy and MRI scan shows no signs of any type of nerve damage. Nothing consistent with demylination or peripheral nerve damage. On the contrary, the nerve function from the skin biopsy proved better than normal. I don't get any pins and needles or have any loss of nerve function. It's pain only.  Thiamin I take is 100mg a day in tablet. I used to test blood sugar a lot in the past, and it never correlated directly with the nerve pain. It has only correlated with increased exercise and stress. The after eating getting worse thing happens when the blood flow is directed to the stomach for digestion away from the peripheral areas, which is normal, but central sensitization has caused normal sensations to be turned into pain by the brain, according to the latest doctors, hence whey I am being referred to the pain clinic.
    • knitty kitty
      @HectorConvector, My blood glucose level would spike after I ate.  It wouldn't return to "normal" fasting blood glucose level for longer and longer.  Blood glucose level should return to normal an hour after eating.  Mine would take two hours, then three hours, then longer.  So over night fasting blood tests wouldn't necessarily be very high until they got really bad.  But the peripheral neuropathy would feel the worst while my glucose was too high.  My blood glucose meter confirmed this.   On top of all that, my Celiac disease was still undiagnosed at the time, and I was suffering from malabsorption and nutritional deficiencies.  The deficiencies in B vitamins affected not just insulin production in the pancreas, but also the nerves in my extremities.  Nerves need B vitamins to maintain the myelin sheath protecting the nerves (like the plastic coating on electrical wires) when they fire.  When the myelin sheath is not maintained, that "pins and needles" feeling starts and increases as more of the sheath is damaged.  My parathesia progressed until the "pins and needles" went from my toes all the way up to my thighs.   Without sufficient vitamins, I started slowly losing weight.  Our bodies will start using not only stored fat, but also tear down our own muscles to provide fuel for the body to stay functional.   I hope you don't have pre-diabetes or diabetes.  Most diabetics have a thiamine deficiency.   How much thiamine are you taking?  What form of Thiamine are you taking?  
×
×
  • 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.