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 Has Me Confussed

dolly

Recommended Posts

dolly Apprentice
dolly
Posted

Saw my GI doc yesterday and he wants to do the endoscopy which I agreed to since I decided it was better to know for sure.

But, here is where he confussed me. He said that either you have Celiac and are allergic to gluten or you are not. Having Celiac and an allergy to gluten are one in the same. If you don't have Celiac, then you shoud go about eating gluten even if it doesn't make you feel good.

So, is that what all of you understand about Celiac and gluten sensitivity as well???????

I was under the impression that they were two different things (Celiac and/or gluten sensitive).

Can someone help me with this?

Thanks!!!

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

Celiac.com Sponsor (A8-M):


buffettbride Enthusiast
buffettbride
Posted

Your doctor sounds retarded.

Any chance you could find a different doctor with better knowledge before springing for an endoscopy? I'm not saying the endo isn't necessary, espec. if the medical diagnosis is important to you, but find someone who knows what they are talking about.

Have you had the blood tests yet?

You don't need a doctor's permission to stop eating gluten if it makes you feel better, even if endo and blood tests are negative for Celiac.

If the gluten-free diet doesn't seem to help you, then you would want to look into other possible diagnosis or trying other food eliminations.

kbtoyssni Contributor
kbtoyssni
Posted

A couple things:

-Celiac is not an allergy. It is an autoimmune disease.

-By the time you can get diagnosed with celiac through blood test or scope, you already have a lot of damage to your intestines.

-If you test negative for celiac it means you either have celiac but don't have enough damage, you "just" have a gluten intolerance, or you don't have an issue with gluten at all.

-If you have a gluten intolerance, gluten still makes you sick, but you may not get the same kind of intestinal damage as you would with true celiac.

-Whether you have celiac or gluten intolerance, the only treatment is a gluten-free diet. If you have gluten intolerance, you should not eat gluten. Why would you continue to eat something that you know is making you sick?

-Traditional medical testing will not detect a gluten intolerance. You could try something like Enterolab instead.

In my opinion, gluten intolerance and celiac are the same disease, celiac is just the more advanced stages. I also believe that dietary response is a perfectly valid method of diagnosis.

dolly Apprentice
dolly
Posted
  • Author

kbtoyssni & buffettbride,

Thanks for responding!!!!!! Thanks for sharing your thoughts and info as well.

I got the blood work done and one of the test came back abnormal.

I did the gluten free diet challenge and I felt 100% better so when this endoscopy is done then I am going off gluten. The doc I went to was part of a practice that was suggested on this website. Frankly, I am so sick of doctors at this point that I just want to get the endoscopy done with so I can move on with my life.

I only am getting the endoscopy done so that I will have the peace of mind knowing once and for all, if I have Celiac or not. Mostly because of the complications that come from long term damage that comes from Celiacs.

But, my instincts tell me that this is more of a food allergy or sensitivity than true Celiacs. When I asked the Doc about that yesterday he said that there is no such thing. Either you have Celiacs or you are imagining it.

So, I guess what I am really asking is if I am negative for Celiac is there another kind of doc I should go to or just stop eating gluten and be happy? thanks! (sorry, I am feeling frustrated by this whole situation)

Ridgewalker Contributor
Ridgewalker
Posted
If you don't have Celiac, then you shoud go about eating gluten even if it doesn't make you feel good.

What kind of doctor tells someone they should continue eating something that makes them feel like crap?! Especially something you DON'T NEED to be healthy? That is ridiculous.

kbtoyssni Contributor
kbtoyssni
Posted
So, I guess what I am really asking is if I am negative for Celiac is there another kind of doc I should go to or just stop eating gluten and be happy? thanks! (sorry, I am feeling frustrated by this whole situation)

Usually a GI is the only doctor you can see about celiac. However, some people choose to see a natural remedies type doctor if they have a lot of vitamin deficiencies and other health problems caused by celiac. I would probably go gluten-free for a few months and if you continue to have major problems then look into these types of doctors. Some people also see a nutritionist, but most have found that you'll get more information from this site than from a nutritionist. If you don't live the disease, I don't think you can understand everything you need to consider to have a truly gluten-free diet. I did not see any doctors for additional help after I diagnosed myself :)

debmidge Rising Star
debmidge
Posted

It is entirely possible to have celiac and a wheat allergy together.

Both are immune disorders; but celiac is much more serious and complicated.

You cannot determine a wheat allergy from endoscopy.

Wheat allergy will give you gastro symptoms too and skin conditions.

People who don't know any better lump these two conditions interchangably. They are two entirely different health issues. Both are treated by diet. A wheat allergy diet will overlap with a gluten free diet as many foods which are wheat free are gluten free; however a wheat free product doesn't mean it's gluten free.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
I only am getting the endoscopy done so that I will have the peace of mind knowing once and for all, if I have Celiac or not. Mostly because of the complications that come from long term damage that comes from Celiacs.

If this is the only reason you are doing an endo it is not a good one. Endo's are not perfect and they can conclusively tell you that you have enough damage for the celiac label but they can not definately say you don't have it. The long term damage from gluten intolerance is just as bad as the damage that true biopsy proven celiac is. You need to listen to your body. Your GI is woefully ignorant about celiac, I would lay a bet he doesn't even know that gluten can cause neuro symptoms. Ask him and see the look he gets on his face. What you do is up to you but with a positive result to the diet your body is already telling you all you really need to know.

hathor Contributor
hathor
Posted

The problem is that there are different schools of thought among doctors. It sounds like you happened across one of the reactionary ones that don't know what they are talking about. Would he counsel continuing smoking, even if it made a patient feel bad, because there was no observed lung cancer ... yet?

Here is a more enlightened view, at least IMHO:

https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

You don't need to doctor's permission not to eat something.

You could just go with Enterolabs. This would give you a lab result that can tell you if you are reacting to gluten, assuming that is important to you. They also test for other things that many gluten sensitive folk can't handle. About early diagnosis:

Open Original Shared Link

dolly Apprentice
dolly
Posted
  • Author

I want to thank all of you for all of your help and advice.

Being back on the gluten my head is swimming. I can barely think straight.

I have a lot to think about. Thanks so much for everything!!!

dolly Apprentice
dolly
Posted
  • Author

I have thought about everything you all have said and how absolutely ill I feel after 3 days back on the gluten-and, I have decided to cancel that proceedure (the endoscope) and stop eating gluten. I just don't think that I will survive if I keep eating gluten. So, I will look into endolab and see what that entails. But, I thank you for allof your help. It has really helped me to see things clearly.

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. knitty kitty
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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
      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.
×
×
  • 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.