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
  • 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.