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

My First Ge Visit

Dixie81411

Recommended Posts

Dixie81411 Newbie
Dixie81411
Posted

Thanks to those of you who have shared your experiences and wisdom, I went well prepared to my visit. Even had a written list of complaints, symptoms (which she didn't even look at). I have had years of diarrhea (often urgent, explosive, mucus) and fatigue. Last few months have been worse, up to 10 times per day, overwhelming fatigue, mild depression, irritability, memory issues, brain fog, several dizzy spells (last week only for the dizziness), bloat after eating, reflux and probably stuff I'm forgetting. Told her the only time in the last 10 years I have felt healthy and strong is the times I've been on a low carb diet. Her response was, "why didn't you just stay on it"?

She wants a colonoscopy, refused the upper endoscopy - "no need for it". She vaguely mentioned Celiac Disease as unlikely after I asked very pointed questions leading her in that direction. I insisted she run the full celiac panel which I had copied from here, but sensing her attitude, told her it was from the U of MD Celiac Center website (we live in MD). That appeased her somewhat but she had to go ask someone what some of the tests were and told me insurance probably wouldn't cover it and the lab won't know what they are!

We are running Full Metabolic Panel, CBC and Celiac Panel along with lots of stool tests. I asked about iron levels as I'm always anemic since childhood. "Won't run those until I see the CBC". Basically she would only address the diarrhea. Referred me to PCP for everything else. Wouldn't consider that they could all be related. Even asked about Vit/Mineral deficiencies since I've had over 10 yrs of D. Said she's not concerned about those as I don't look dehydrated or sick! Grrrr. I now feel the pain of so many of you who have had similar experiences.

Also, she wants me to take fiber and probiotics. On the plus side, the lab tech knew exactly what tests to run as she just did them on herself. The doc did say if I feel better without gluten, "just don't eat it". Yeah, cause that's easy. Note the sarcasm! Her first impression is, wait I bet you know, IBS. Plus, since I get sick with dairy, "just don't eat that either". If the labs lean toward Celiacs, she wouldn't need the endoscopy and would just diagnose me with celiac disease based on symptoms and labs.

So, the labs will also be mailed back to me and I am seeing PCP Friday (so is my 20 yr old daughter I wrote about yesterday). I've never taken fiber. What should I expect with that? If I'm going to react badly to that, how soon would it happen? She said to give it a good 2 wks and if it wasn't helping to just up the dose. Sort of sounded crazy to me. Also said I could see an allergist if I had concerns about a food allergy.

Other than pulling my hair out, do you have any suggestions (other than another doctor, which I'll be looking for)? I hesitate to cancel the colonoscopy since it will take a while to see someone new and I really have no idea what's going on with me (just suspicions).

I will have the PCP run as much as I can push for including thyroid panel. Thanks for your help. Any suggestions are very much appreciated! Dixie

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

If it were me, I would refuse the colonoscopy. If they schedule an endoscopy, then let them do colonoscopy at the same time. The endoscopy is where they wud find celiac, a colonoscopy may reveal other issues but if you have celiac, that is probably what is causing the other issues! And it has been my experience that once they find a problem during colonoscopy, that becomes the whole focus and they won't even look at the possibility of celiac.

You are paying for their services. Do not let a know it all doctor call the shots for you!

GottaSki Mentor
GottaSki
Posted

:angry:

Just makes me angry that we have to fight for tests to rule out a disease that has so many varied symptoms - I was dismissed by so many doctors for decades there were years that I didn't even try to get an answer.

Makes it very difficult to keep fighting for answers - yet we need to.

Personally, I'd switch gastroenterologist before having a colonoscopy -- even if this one you saw did agree to an endoscopy -- I would not trust her ability to biopsy for Celiac Disease.

Your primary can order blood allergy testing. It can be helpful to see an allergist, but for me it was just another in a long line of doctors telling me I was perfectly healthy with all "normal" tests - never mind that I have severe reactions to many foods and I swell/turn bright red in the heat or during exercise - perfectly normal ;)

pricklypear1971 Community Regular
pricklypear1971
Posted

Oh goodness.

I agree with both, above about postponing the colonoscopy until you can schedule both together or at least with a doc that will give you a fair shake. I think any long-time member on this board can spot this doc's style a mile away, and she ain't one to be Celiac/gluten friendly. Get your lab results and RUN.

I suggest contacting your local Celiac group and asking for a GI reference.

Probiotics and digestive enzymes won't hurt you or interfere with testing (at least I don't think the digestive enzymes will, I'm on the fence with that one since they break down food, but I really don't know...).

I would personally wait on the allergy stuff. Food intolerances are not allergies, though you could have an actual allergy to a food.

Newbee Contributor
Newbee
Posted

That doctor sounds awful! I know how hard it is to find a good one. Mine isn't that bad, but in some ways not much better. I was diagnosed as celiac and with the biopsy they found a lot of damage and they already knew I had osteopenia (found that before the celiac), but when I asked about being tested for additional vitamin deficiencies he told me I didn't need to be.

After being gluten free for 14 months I still have a lot of food intolerances which I didn't realize I had at first. One of the things I have the most problem with are fruits and vegetables. I think if I were to even try to take fiber it would make me quite sick with D, so I'm kind of leary about what she was telling you about that. Usually with D they tell you to avoid fiber because it makes the problem worse typically.

I agree with others about not doing the colonoscopy without the endoscopy. There is a GI doc who will do both, but annoying that you have to find another one. Also, as you may know, be sure not to go gluten free until after you've had the endoscopy as it could mess up your results (could lead to a false negative result). Good luck!

luvs2eat Collaborator
luvs2eat
Posted

I finally started taking fiber caplets after years of transcribing for GI docs... they ALL say to take fiber. And when hubs was diagnosed with diverticulitis, his doc said, "Fiber, fiber, fiber... there's no such thing as too much fiber."

Fiber has sort of changed my life. I had very loose and urgent stools for years and now they're formed, I'm very regular, and will certainly continue them. The dosage information includes taking lots of them for blood pressure control... up to 6 a day... but I just take 2 a day. It helps "bulk" up the stool.

Aprilelayne Newbie
Aprilelayne
Posted

It helps "bulk" up the stool.

Same here, in our house I throw the fiber granules into the dinner that everyone eats. My husband and son need it to thin things out, but for myself it is to 'bulk' up things.

Fiber works both ways.

I think that the fiber helps with my D issues in that it thickens things up and prevents the acidity from being as noticable as without. Like the 'thickener' absorbs the acidity of the D.

(just my personal experience, probably no scientific proof, just anecdotal)

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

If you want to try adding fiber you don't have to load up the gluten. Psyllium husks are great for adding fiber. :)

Dixie81411 Newbie
Dixie81411
Posted
  • Author

Thanks for the input. You all have taught me well so I basically lied to my pcp today to get the lab tests I need (like thyroid panel and vit/min levels). I told her the gastro doc wanted her to order them.

Haven't had a chance to do labs yet as my daughter is back in the hospital (see Daughter in Crisis post). She is now having dizziness, memory issues, diarrhea and chest pain. We now have a great doc on her case but no one wants to look into celiacs. However I lied to her pcp today too and got her to order celiac panel so we can do that in a few days.

DD is not nearly as sick this time and this does not appear life threatening. Thanks again and hope this is all clear as I forgot my glasses and didn't expect her to be admitted today.

pricklypear1971 Community Regular
pricklypear1971
Posted

Oh, I hope your daughter improves quickly! I'm sorry to hear she's having problems again.

Great job lying, Mama. :).

frieze Community Regular
frieze
Posted

Some times, ya jus gotta do wha ya gotta do...

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. cristiana
      - cristiana replied to hjayne19's topic in Traveling with Celiac Disease
      2

      Mallorca Guide

      Forgot to add... Quite a lot of 'tapas' are gluten free. Ones to look for: Tortilla de patata (a thick omelette made with potatoes and onions) should be 'sin gluten', and chorizo cooked in red wine makes a nice dish. Look out for sobrasada, which is very Mallorcan, a softer type of sausage/pate which you can spread on gluten free crispbread which...
    2. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @cristiana Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to ...
    3. cristiana
      - cristiana replied to hjayne19's topic in Traveling with Celiac Disease
      2

      Mallorca Guide

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about. I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type. There seems...
    4. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess.
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety. I had awful anxiety at diagnosis, and that feeling of doom that you describe. My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me. I then got a phobia...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,940
    • Most Online (within 30 mins)
      7,748
    Kevin Niemerg
    Newest Member
    Kevin Niemerg
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Mallorca Guide

      By cristiana · Posted

      Forgot to add...  Quite a lot of 'tapas' are gluten free. Ones to look for:  Tortilla de patata (a thick omelette made with potatoes and onions) should be 'sin gluten', and chorizo cooked in red wine makes a nice dish.  Look out for sobrasada, which is very Mallorcan, a softer type of sausage/pate which you can spread on gluten free crispbread which you should be able to buy for supermarkets.  Until very recently we could not buy it here in the UK but we've managed to find a local source, and Lidl have started to sell it in tubs, too. Here's more info on it: Sobrasada is a soft, spreadable, cured pork sausage from Spain's Balearic Islands (like Mallorca), distinguished by its reddish color from paprika, sweet-spicy flavor, and pâté-like texture, perfect for spreading on toast, cooking into dishes like eggs or pasta, or drizzling with honey. Its unique texture comes from the island's humid climate preventing full drying, resulting in a semi-soft sausage that's gently aged, unlike drier mainland chorizo.
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @cristiana   Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down.    I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog.    Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 
    • cristiana
      Mallorca Guide

      By cristiana · Posted

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about.   I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type.  There seems to be a thought in the UK that if you label something gluten free it will affect flavour etc and will put people off buying it!  However, in the case of Spain, it is almost as if the the Spanish see it as an endorsement of quality and flavour!  There is a supermarket called Mercadona and they label their produce very clearly. Paella should be gluten free so long as the chef use the right stock such as Knorr or a gluten-free homemade stock - you can check.  Most Mallorquins in catering speak English but if not, ask, "Contiene gluten?"  Tumbet is a wonderful dish if you like peppers, tomato, aubergines, garlic and olive oil!  A sort of variation on ratatouille.   Slow roast lamb shank should be safe, and there are endless fish dishes to choose from and salads.  Flan is made with eggs, sugar and caramel, and should be gluten-free.  Lots of gluten-free ice cream and sorbets, they should be clearly labelled. If you want specific restaurant recommendations, feel free to PM me. Cristiana    
    • trents
      Insomnia help

      By trents · Posted

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess. 
    • cristiana
      Insomnia help

      By cristiana · Posted

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.   In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game. As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another: In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.    I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy! Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.   Anyway, sorry for the length of this post.  I hope something might be of help. Cristiana  
×
×
  • 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.