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

Doctor Visit - GW Hospital


rain

Recommended Posts

rain Contributor

I need to read the postings in this forum but I have to vent first. I did this to myself -- went and saw a gastro doc without doing all the research I should have done.

(Can we post doctor names?) Anyway, GW Hospital has been good for many things, but the gastro doctor did not understand celiac. He didn't ask me about gluten ataxia (I forgot to mention it) He told me there is no relationship between the intense rashes I've had SINCE going gluten free (come on, is he kidding me? I get an all over body rash that is exzema but with an intensity that I've never had and it's not connnected?) And the kicker was he told me that the concentration issues that have been steadily improving are not related to the celiac and if I had questions I should see a psychiatrist. His team also told me that acid reflux, chest tightness and constipation are not related to celiac. asthma (ok, this is my universe may not be true for others) kicks in for me whenever my body is under stress, and acid reflux -- I realize there are different issues happening, but it is one digestive system and he is a gastro doc...what is the relationship??? He also said all the celiac symptoms should have alleviated in 6 months...I don't believe that...I dont' even understand how that could be true. My body heals slowly on a good day, and from a major "illness"? He told me to see a rheumatologist, but I'm not going to..I'm going to give my body more time, take my vitamins, eat simple foods, etc. Then I'll see..

I think I get brushed off too because I "look" healthy.... it's back to non-traditional medicine (accupuncture) for me..


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



Celiac.com Sponsor (A8-M):



Cabins2 Newbie

Hey there!

I'm so sorry to hear what happened at your Gastro. appt. I actually have my Gastro. appt. this upcoming Tues. & am worried about running into the same thing. If I do run into an unknowledgable dr., I'm considering checking out the Celiac Clinic at UIC (Chicago). I'm not sure, but I think that I read on this site that they're having a screening open to the Public this October. This is actually my 1st posting. I'm new to all of this.--Came to the stark & disappointing realization that my symptoms may actually be either a gluten sensitivity or full-on Celiac around June 2010. Whatever the case may be, I've been feeling so much better & the 'brain fog' is a lot better since I've been Gluten-Free/Casein-Free since mid-March. I've also had really weird, bad rashes, & 2 GERD operations--fundoplications & hiatal hernia repair a few years ago. Hang in there, keep researching, and try to be really careful to stay away from gluten. Try to keep your spirits up & keep in mind that you are not alone.

T.H. Community Regular

I'm so sorry you hit such an ignorant doctor. :angry:

Just as an example of his being just wrong? The most recent research on adult diagnosed celiacs say that only about 20% of us actually fully recover. The rest of us don't. So full recovery in 6 months? Uh, no, no, and no again. He sounds like he's either not up to date on the most recent research on celiac disease, or is a person who doesn't bother to listen to his patients and figure out what the problem is other than 'in their heads.'

I think SO many of us celiacs have had problems with the doctors telling us it's all in our heads that we're freaking sick of it. Any time a doctor tells me that now, especially without testing or asking more questions so that I know he's thinking of EVERY other possibility? I write him or her off as not good for my health. If they can't bother to really look at us, LISTEN to us, and help us figure out what is going on, how can we be safe with them and trust them to make ANY kind of informed diagnosis?

Argh, so, so frustrated on your behalf over here. I just went through this crap with an allergist, who also used the 'it's a coincidence all this is happening since going gluten free.' I finally found another doctor who listened, who asked questions, and who figured out that some of my allergies were actually this rather rare, funky condition that is fixable with physical therapy for the throat. :blink:

Unsafe and unhelped by one doctor, helped and safe with the other.

If you have any other option, oh I would so see what other doctor you can find. I truly hope that you can. Or at the very least maybe you can get some of the more recent research and bring that stuff in and educate your doctor a bit, grrr.

Good luck!!

aderifield Apprentice

You know what makes me mad? We still have to pay these buffoons! I think it's the only profession where they can ignore you, not listen to you, be rude to you, actually give advice that in no way correlates to you and in the end, still put their hand out. It's shameful! I don't know how most of them live with themselves.

rain Contributor

Thanks for all the replies - and TH thanks for sharing your experience. I suspect I'm in a similar predicament, that I have another thing going on that just needs to be identified.. IF only a doc would listen. I'm going to keep looking, after I take a break.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.