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

Gi Doctor Info - What To Expect

Michelle L

By Michelle L
in Doctors

Recommended Posts

Michelle L Apprentice
Michelle L
Posted

I've been gluten free for about four months now....somewhat self-diagnosed because other doctors wouldn't listen.

But, I have still have continual trouble gaining weight and a lot of bowel movements, so I am going to a GI doctor in 2 weeks. So I'm not going in to ask or figure out if I have celiacs...because I know for sure I am atleast gluten intolerant via my nutritionist and myself...and I cant go back to eating regular foods to get my intestines checked.

What should I expect the first appt. going in? For those who started the gluten free diet themselves, and then went and got checked by a GI / doctor...what happened? Did they do any tests on you to make sure everything was going okay / or to see if you had any deficiencies? Did they prescribe you anything or send you to another doctor?

Just wondering what to expect...hopefully this doc will realize gluten is a real problem...

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Well, perhaps I should turn the question around and ask you, what do you expect of this doctor? What are you consulting him for? What is it that you wish him to do for you.

As you stated upfront, you are not looking for a diagnosis because you have already determined what is causiing your problems. Do you want him to verify the diagnosis? Do you want him to suggest additional testing that should be done? You are really going to be in control of this appointment depending on what it is you are seeking from the doctor. I do think you should be clear on this in your own mind going on, because that will determine what course the consultation takes. You can't just walk in and say, Hi. :rolleyes:

Presumably you would be looking for testing for any possible nutritional deficiencies, you would probably like a DEXA scan to check on your bones (he may want to delay this until he says your Vit. D levels). and you probably want your thyroid function tested because gluten can screw this up. Depending on your doctor's level of expertise in celiac, you can expect just about anything. Many doctors do not like patients diagnosing themselves, many do not believe in gluten intolerance vs. celiac disease, many of them barely know the symptoms of celiac. So you should take with you a list of the common celiac symptoms and highlight those which you had. You should explain your continuing problems not yet alleviated by the diet,. You could ask him if he has any suggestions to offer for your future care. You could ask him if he has someone (dietician / nutritionist) to refer you to for help with your diet and to make sure you are getting the right nutrition.

But you do have to get it clear in your own mind why you are going to see him :)

mark5767 Newbie
mark5767
Posted
Just wondering what to expect...hopefully this doc will realize gluten is a real problem...

That might take some time and testing. Two tests my doctor recommended right away were a CT scan and an upper endoscopy. Both of these are expensive, time consuming and a little intimidating. But if you are experiencing serious symptoms like I was I would not hesitate to have these done. The CT scan was not so bad and I'm guessing it did rule out a few things like massive tumors in my gut.

Since I was feeling pretty good after the CT scan I delayed scheduling the endoscopy since that sounded pretty harsh. But soon I was suffering to the point I scheduled the procedure as soon as possible. It was quite unpleasant, but totally necessary. The doctor was able to clearly see the damage to my small intestine and even made me look at the pictures. Yuck.

So while I might have a bunch of questions I'm seeking answers to regarding healing, diet, etc, my doctor was able to state with "100% certainty" that I had celiac disease and gluten was causing severe damage to my gut.

Michelle L Apprentice
Michelle L
Posted
  • Author

That might take some time and testing. Two tests my doctor recommended right away were a CT scan and an upper endoscopy. Both of these are expensive, time consuming and a little intimidating. But if you are experiencing serious symptoms like I was I would not hesitate to have these done. The CT scan was not so bad and I'm guessing it did rule out a few things like massive tumors in my gut.

Since I was feeling pretty good after the CT scan I delayed scheduling the endoscopy since that sounded pretty harsh. But soon I was suffering to the point I scheduled the procedure as soon as possible. It was quite unpleasant, but totally necessary. The doctor was able to clearly see the damage to my small intestine and even made me look at the pictures. Yuck.

So while I might have a bunch of questions I'm seeking answers to regarding healing, diet, etc, my doctor was able to state with "100% certainty" that I had celiac disease and gluten was causing severe damage to my gut.

Since ive already been gluten free for four months...do you think they would still want an endoscopy? I know some healing has probably taken place...but do you think a doctor would recommend that to see how my intestines are healing?

mark5767 Newbie
mark5767
Posted

The endoscopy recommendation I think will depend on your symptoms. If you are experiencing chronic, serious issues that likely could be a result of something wrong in your stomach and/or small intestine then it's probably worth doing the procedure. They are able to view the condition of the tissue and also take biopsies so it's pretty good information.

That said it's not a procedure to take lightly, there are risks with it and it's not fun at all. In my case, I was in enough pain that I knew something was seriously not right and I needed to figure out what the heck was going on, so that kind of made the decision for me.

BabsV Enthusiast
BabsV
Posted

Since ive already been gluten free for four months...do you think they would still want an endoscopy? I know some healing has probably taken place...but do you think a doctor would recommend that to see how my intestines are healing?

They may want to go in and check and see if there is anything else wrong...ulcers, gastritis, H. pylori, etc. That might relieve any worry that is it something other than gluten related since you seem to feel that is the main issue.

I've been scoped 3 times. While not the most pleasant experience it really wasn't that bad. As long as you are sedated it is no big deal. I always felt worse from the after-effects of the sedation than the procedure itself.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • 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.