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How Many Of Your Gi Doctors Were Willing?

Guest Disturbed

By Guest Disturbed
in Doctors

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celiac3270 Collaborator
celiac3270
Posted

My regular doctor thought that I had "cyclic vomiting", something that's related to migraines (and there's a history of migraines in my family). However, he still recommended that I see a GI doctor to be sure it wasn't something else....wow, I am glad that I listened to him.

The GI ran bloodtests to check for allergies and a variety of other things. I also had a sonogram thingy done and a bone density test. Bloodtests showed that I had celiac disease, but no allergies. My bone density test showed that my bones weren't as "mature" or something as they should've been -- 1-2 yrs. behind, I think. He did the biopsy to be sure...and said that I had celiac disease....so he found it really well.

He was terriffic in finding it, but I think that now he isn't that helpful....I'm going back to him for "check-ups" on the celiac disease.....but he seems to think that I am saying that everything is because of celiac disease....he thinks that symptoms like diarrhea, cramping, vomiting, etc. are not related to celiac disease and it annoys me since I know that it is -- symptoms don't always, and don't usually, leave in under 5 months :angry: ! He thinks that I'm just attributing everything to Celiac.... <_<

Helpful to diagnose, but not to cope.....

-celiac3270

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dana-g Newbie
dana-g
Posted

xx

dana-g Newbie
dana-g
Posted

celiac3270, are you supposed to have a second biopsy to check on your gluten-free progress? My daughter, who is 11, is supposed to have another one 6-8 months after being gluten-free. I know you've still been having problems on occasion, and that you aren't allergic to anything, and that you are meticulous about not ingesting gluten. Just wondering what your thoughts are on this.

celiac3270 Collaborator
celiac3270
Posted

I've been....about 5 months, I guess and the doc. hasn't talked of another biopsy...I've heard of that, but I think that my doctor's going to stick with monitoring it by blood test....

I've heard of that, so I think it's just a matter of what the individual and their doctor feel is right. Some doctors might feel it necessary to do a biopsy, but mine, I think, feels that monitoring it with blood is suitable...for now, anyway

-celiac3270

dana-g Newbie
dana-g
Posted

Oh, well that's good that you and your doctor have it worked out. I know my daughter had a fair amount of damage--NO symptoms--and this doc routinely runs a second biopsy. She sailed through the first one, so we're not concerned about the second...I never thought I'd hear myself say THAT! I enjoy your posts--you know so much I have to remind myself you're a kid! Actually, I think you're a grownup trapped in a kid's body...

  • 2 weeks later...
Shamrock Newbie
Shamrock
Posted

All these stories are kind of scary. I went to my internist who seems to dismiss my feelings that I might have celiac. However did write me a referral to a GI but wrote on it "Colitis". I have done some research and although there is some similiarities in symptoms I did tell him I have a brother with Celiac and my syptoms seem somewhat textbook for Celiac not Colitis- I am in an HMO so I am hoping for the best when I go to GI- I was gluten-free for about 5 weeks and then went back after finding that I had to be on gluten to be tested- sure enough I have been feeling sick ever since- August 5(my appt date) can't come soon enough for me.

snoopini Newbie
snoopini
Posted

My doctor actually lied to me and told me he took "several" biopsies during my endo.....he actually only took one! I'd like to find somebody who specializes in celiac or one who is more inclined to accept it!!

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dianne Rookie
dianne
Posted

I just saw a new GI because I wasn't happy with the one I had. The first GI never did an endoscopy, or a biopsy. GI number two says that the blood test that the first one did was such a poor test that htey don't even use it anymore. So, he's not sure that I have Celiac's. In my first office visit, he was gave me a more thorough exam than number one ever did. He's going to try me on a slice of toast in the morning, prior to an endoscopy four weeks from now. It's such a pleasure to have a GI who communicates with me, and seems to know what to look for, and cares about me! I wasn't familiar enough with celiac disease prior to being diagnosed, to know what tests to ask for. I don't even know what blood tests I had. Even after my diagnosis (which I had to call the doctor to get), he didn't discuss the condition with me, other than to refer me to a dietician. I'm so glad my PCP referred me to this doctor! This group of gastroenterologists seem to be very familiar with celiac disease. Even before I was referred to them, I found them on the Internet. through a celiac-related website. :D

crc0622 Apprentice
crc0622
Posted

I, too, saw a doctor of middle-eastern descent and was diagnosed on my second visit -- he scheduled the edoscopy right away and I had a diagnosis within 2 weeks. Yes, I am lucky and thankful, too.

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
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