Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Doubts About A Gi Doctor I Just Saw


Coolclimates

Recommended Posts

Coolclimates Collaborator

I just saw a second GI in Champaign-Urbana, Illinois yesterday. She is with Christie Clinic. I don't want to name names, but if you contact me personally I will tell you who she is.

Anyhow, she looked over my results and said that I have a mild case of Celiac disease. I told her about my symptoms: fatigue, insomnia, restless leg syndrome, acid reflux, acne, easy bruising, frequent nose bleeds, sinus pressure and congestion, depression, anxiety, frequent yeast infections, some weight loss. She said she didn't think that many of these symptoms were related to Celiac at all and that they may never go away. But I have read in many sources that these can all be symptoms of Celiac.

I asked her about gluten free lipstick, soap, lotion, etc and she said that it's not an issue and not to even think about it. I also asked her if I have a potential to gain a lot of weight on this diet and she said very few people gain weight on this diet and not to worry. I also said that I heard that rice, corn and potatoes have a lot less nutrients than wheat and can be empty calories, but she said that they all have the same nutritional values. I asked if I should be eating more grains with more nutritional value (quinoa, amaranth, etc) and she said not to bother.

I also asked her if I should go dairy free for the next few months (as I haven't gotten much relief yet from the gluten-free diet I've been on for 2 1/2 months). She said I could if I wanted, but she seemed rather indifferent about it.

Needless to say, I'm a bit confused and frustrated with this appt. Is it my imagination, or does she have a lot of misinformation? I've read many books written by professionals that contradict much of what she told me.

I think I should maybe contact the Celiac center in Chicago next as they might be more informed.

Any thoughts?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I think she is misinformed about the full systemic effect of celiac disease, but she is not alone in that as far as doctors go. Since she is a GI doctor her primary interest is going to be in the GI symptoms. It seems you know more than she does at this point and I do think that giving up dairy may be helpful for you. You know you need to watch out for lipsticks etc so you don't really need her permission to do so.

You have only been on the diet for a couple of months and for some of us it takes time to heal. If you have been accidentally glutened during that time it will slow down the healing a bit.

As far as going to the celiac center you mentioned what is it that you want them to do for you? They may want you to do a challenge for a ocuple of months to do their own testing, is that something you want to do?

I guess what I am trying to say is that you have your diagnosis, as far as the celiac issue goes it can take time and being very strict to heal fully. I would be as strict as possible, eat as much unprocessed foods as you can and take some good for sure gluten free supplements. Give up dairy and soy until you have healed fully then add them back in one at a time to watch for reactions. If after a while you are still having serious issues then yes do get evaluated to make sure something else isn't going on, whether you are celiac or not does already seem to have been determined.

StacyA Enthusiast

Don't rely just on a doctor for information. Read the books. See a dietician. Buy some cookbooks. Cruise the internet (reputable sites.) Even someone with diabetes would seek information from sources beyond a physician - and a good physician would encourage it.

See if there's a dietician in your area with knowledge of celiac's.

Coolclimates Collaborator

Don't rely just on a doctor for information. Read the books. See a dietician. Buy some cookbooks. Cruise the internet (reputable sites.) Even someone with diabetes would seek information from sources beyond a physician - and a good physician would encourage it.

See if there's a dietician in your area with knowledge of celiac's.

Unfortunately, the dieticians in my town are pretty useless. That doctor even told me so. The other GI I saw earlier (who did the biopsy) couldn't recommend anyone here either. I did see one dietician, but she was really not that informed about the gluten-free diet and couldn't answer many of my questions.

Believe me, I've done my research. I've read nearly a dozen of the newest books about celiac disease and have also looked at online info (like here). I've also read through many cookbooks and have bought some. I think the Chicago Celiac center may be what I need to look to next.

Basically I am unsure whether I should eliminate dairy products for the next few months. I don't have any allergies to dairy, but don't know about intolerance. I'm not gonna just cut it out of my diet for the next few months if I don't have to. I haven't been feeling much better with the gluten-free diet since I started in early May. That's why I'm wondering if consuming dairy products might be hendering my recovery. On the other hand, it may just take a much longer time before I start feeling any improvements. So the main question I have right now is whether I should eliminate dairy or not.

T.H. Community Regular

Wow, yeah - misinformed doctor, ahoy.

I'd head right to that celiac center. As you've said, you've seen a lot of information that contradicts her opinions, and considering that much of that information is coming from other doctors AND other celiacs, seriously, I'd ditch the woman.

To contrast? My doctor hears about ANY list of constant, varied physical problems in a patient and he gets really ticked off if doctors aren't testing them for issues that affect the whole body, like food allergies or auto-immune disorders. B/c anything that affects the whole body can, big surprise, cause problems in the whole body. <_< My depression disappeared after celaic, my fatigue. And I hadn't even thought about it, but I haven't had a sinus infection or sinus headaches in the year since I went gluten free, and I used to get them every other month.

woo hoo, gluten-free diet!

My skin is definitely better. I heal better from injuries right now. I am less angry and I worry less.

Again....ignorant doc, big time.

I just saw a second GI in Champaign-Urbana, Illinois yesterday. She is with Christie Clinic. I don't want to name names, but if you contact me personally I will tell you who she is.

Anyhow, she looked over my results and said that I have a mild case of Celiac disease. I told her about my symptoms: fatigue, insomnia, restless leg syndrome, acid reflux, acne, easy bruising, frequent nose bleeds, sinus pressure and congestion, depression, anxiety, frequent yeast infections, some weight loss. She said she didn't think that many of these symptoms were related to Celiac at all and that they may never go away. But I have read in many sources that these can all be symptoms of Celiac.

I asked her about gluten free lipstick, soap, lotion, etc and she said that it's not an issue and not to even think about it. I also asked her if I have a potential to gain a lot of weight on this diet and she said very few people gain weight on this diet and not to worry. I also said that I heard that rice, corn and potatoes have a lot less nutrients than wheat and can be empty calories, but she said that they all have the same nutritional values. I asked if I should be eating more grains with more nutritional value (quinoa, amaranth, etc) and she said not to bother.

I also asked her if I should go dairy free for the next few months (as I haven't gotten much relief yet from the gluten-free diet I've been on for 2 1/2 months). She said I could if I wanted, but she seemed rather indifferent about it.

Needless to say, I'm a bit confused and frustrated with this appt. Is it my imagination, or does she have a lot of misinformation? I've read many books written by professionals that contradict much of what she told me.

I think I should maybe contact the Celiac center in Chicago next as they might be more informed.

Any thoughts?

GFinDC Veteran

You can always eliminate on a trial basis. If you take it out for a month and don't fell any better, then maybe it isn't a problem for you. Since you are still having symptoms, it makes sense to start somewhere in your troubleshooting. Dairy is as good place to start as any, although soy would be tie IMHO. Really, eliminating soy is a good move for anyone.

  • 1 year later...
Coolclimates Collaborator

well it's been over a year since I made this post and needless to say, I never saw that doctor again. At this point, I'm not concerned about dropping names, as I've spoken to another Celiac in my town who thought this doctor was useless. Her name is Dr Nugent at Christie Clinic. Since then, I've been going up to the Chicago Celiac center. They are tons more knowledgable about this than in Champaign-Urbana. The docs don't know crap here. Anyway, as it turns out, my Celiac disease was a stage 3 out of 4 stages, or partially blunted villi. The doctor told me that my celiac disease was actually quite advanced. Now since then I have switched doctors in Chicago because the prior one was very rude and inconsiderate and said I was being "paranoid" about my diet and that I needed "psychiatric evaluation." That was Dr Semrad. I have no idea why she was so unpleasant to my mom and I. Anyway, I have started seeing Dr Sonia Kupher and she seems much friendlier. I will be getting my blood tested again next month. After a year of being on the gluten-free diet, I was still quite sick with celiac disease (and this was after Semrad accused me of being paranoid and that it was all in my head)...since then I've been much stricter about my gluten-free diet. I got lots of allergy tests to see if there was anything else that was preventing me from healing, but no allergies were found. I had been eating out often in restaurants and although many have their best intentions, I think I continued to get exposed to gluten via cross contamination. I also found some other foods that I had been eating that were questionable.

Anyway, I've been on this diet for nearly 1 1/2 years so I really hope there is some improvement when I get tested again in October.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,703
    • Most Online (within 30 mins)
      7,748

    Shenaz
    Newest Member
    Shenaz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @nanny marley, Have you been taking any vitamins or mineral supplements besides Vitamin D? What are you eating?  Do you eat processed gluten free foods?   You said your symptoms included fatigue, body hair loss, low vitamin d,  Restless Leg Syndrome, Raynaud's Syndrome, contact dermatitis, rhinitis, body aches, TMJ, heart palpitations, sleep issues, vomiting,  dizziness, frequent bowel movements. There's eight B vitamins and Vitamin C that are water soluble.  When one has diarrhea for extended periods of time, those water soluble essential vitamins are flushed out of the body easily, and there's little time to absorb any more water soluble vitamins or fat soluble vitamins from food moving through that fast.   It's easy to become vitamin deficient with diarrhea.   Deficiency in Vitamin B1, Thiamine, can result in Gastrointestinal BeriBeri which can also cause diarrhea, fatigue, and abdominal pain.  Deficiency in Vitamin B3, Niacin, can cause diarrhea as well as skin rashes, and sleep issues.  Deficiency in Vitamin B12, Cobalamine, can cause diarrhea and Restless Leg Syndrome.  Deficiency in Vitamin C can cause diarrhea and skin rashes. Thiamine deficiency can also cause heart palpitations, sleep issues, and vomiting.  Have you had your thyroid checked?  Hypothyroidism can cause body hair loss, as can iron deficiency.   I've experienced serious nutritional deficiencies which my doctors did not recognize as such and blamed me for making stuff up.  I've experienced these nutritional deficiencies.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins were doing inside the body.  Vitamins are special organic compounds that our bodies cannot make, so we must get them from food or supplements.  Without these vitamins, our bodies cannot function well. Talk to your doctor and nutritionist about supplementing with vitamins and minerals that are lacking on the gluten free diet.  Blood tests for deficiencies in the B vitamins are not accurate.  Taking a B Complex and looking for health improvement is best.   I've got serious vision problems and would really appreciate punctuation.  Thanks P.S.  I take a combination of Thiamine, Cobalamine B12 and Pyridoxine B6 for back pain from crushed vertebrae.  I understand back pain.  These vitamins together relieve pain. 
    • nanny marley
      I ment nan not van 🤗
    • nanny marley
      Ii wasn't asked about that she just said if you can't tk the gluten diet have colonoscopy to check for cancer has my van had it and because I'd had naproxen for stomach ulcers but I stopped that a  while back but I've been very ill this week with the back issues so I can't have the colonoscopy too someone said ask for the virtual one it's much easier for people who have body issues too but I'm not sure I can request that if she doesn't think I need that she was basically saying IBS because Ive suffered since age 25 but that's Wen the back started too and I'm sure high calprotein isn't with IBS I've been low in iron Wen I was jounger and I'm always low in vitamin d I take my own supplement for that now there is definitely something going off its been too long a drawn out problem with added symptoms so I i will keep investigating 
    • Sanna King
      King Arthur Gluten-free bread flour contains wheat starch, but has had the gluten removed. According to the FDA, it meets the FDA's gluten-free standard of less than 20 parts per million (ppm) of gluten. Has anyone here tried to bake bread from this? If yes, did you have a reaction? Thank you in advance for your time and attention. 
    • Gliadingoaway
×
×
  • Create New...