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

Should I Change Doctors?

Aeval

By Aeval
in Doctors

Recommended Posts

Aeval Rookie
Aeval
Posted

Hi,

I just joined this forum today and I need some advice. My doctor wants me to go off grains. I have never been tested for Celiac Disease, do not have any of the symptoms and, as far as I know, am not related to anyone who has it. I have recently recovered from adrenal fatigue but my DHEA is still way to low. My doctor thinks going off grains will help. When I ask her why, she says because I have Celtic, Nordic and Germanic ancestry. This doesn't sit well with me as an explanation. I said, "Why don't you test me for an allergy or an intolerance?" She says that she doesn't think I have an allergy or an intolerance. She thinks I have "wheat toxicity" and there's no test for it. She says there's some type of test she can give me after I've been off grains for three months that will show if I have anti-bodies but I have to be off the gluten for a while first. She says if she gives it to me now, no anti-bodies will show up because I've got grains in my system. Or something like that.

Does this sound right? Has anyone out there ever heard of wheat toxicity? Is it different than intolerance? Is my doctor crazy? Should I run from her office and never look back? Giving up gluten just seems like a big lifestyle change to make for an uncertain reason.

Thanks,

Aeval

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

Celiac.com Sponsor (A8-M):


Guest memoryofaspyn
Guest memoryofaspyn
Posted

Aeval,

I am very new to this also, but to my understanding you want to be on gluten while they test you. They ran my blood work, and I wasnt off of gluten, I didnt even know they were going to test me until I was there. I am sorry I am not much help, but I am sure some one else out here will have better info for you. You are in the right place, everyone here is great!! Good luck!!!

gf4life Enthusiast
gf4life
Posted

Your doctor has it backwards. You need to be ON gluten grains for at least three months for the antibodies to show up. Please print out some articles about celiac disease/gluten intolerance to take to her that talk about this.

Some good ones are:

University of Chicago

Open Original Shared Link

University of Maryland

Open Original Shared Link

Columbia University

Open Original Shared Link

American Association of Family Physicians

Open Original Shared Link

And should you test negative on the bloodwork and still are looking for answers please read these:

https://www.celiac.com/st_prod.html?p_prodi...-41104189220.0e

Open Original Shared Link

I hope this helps.

God bless,

Mariann

Aeval Rookie
Aeval
Posted
  • Author

Thank you both for your letters. I have sent copies of a couple of those articles to my doctor. Hopefully they will help.

Take care,

Aeval

  • 3 weeks later...
livingwithceliac Newbie
livingwithceliac
Posted
:blink: Actually your doctor sounds GREAT! The first doctor I saw opted to give me a full endoscopy to see what was wrong with me, which revealed nothing at all. A complete waste of thousands of dollars. I WISH he would have said something about Celiac disease or wheat intolerance!
  • 2 months later...
jenbody2003 Newbie
jenbody2003
Posted

The doctor does have it backwards, they are to test while ON gluten. They test for three types of IGA antibodies but you want to make sure she orders the right tests and that the lab has the knowledge to run the right tests at the lab. It took three tries before my pediatrician had it right, even though he had heard of the disease. You can also have the disease without any symptoms.

Print this info to keep on hand for any doctor or specialist...

Open Original Shared Link

:D

But some words of advice...

A relationship with a doctor should be a partnership where you feel comfortable with your conversations and feel free enough to ask questions. If this is not the kind of relationship you have with your doctor, you can try to change that or go with your gut if you think that this doctor is not for you.

Good luck and God Bless!

  • 2 months later...
starlitgrl27 Rookie
starlitgrl27
Posted

I would definitely get tested. My family practice doctor that I used to go to told me that I had a mild gluten-intolerance and that i should just start a gluten-free diet. She didnt run a gene test, didnt do an endoscopy or colonoscopy or anything like that to confirm I had celiac. She just left me hanging! And no one else in my family has it, so I dont know where it would have come from. Now I am seeing an incredible gastroenterologist who thinks I dont even have celiac! I've been on the diet for six months! So now he's gonna have me go off the diet and do real tests to make sure i really have it. The moral of my story is, it's not worth all the trouble if you can't confirm it.

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.

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 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    2. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    3. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    5. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    VerafromNJ
    Newest Member
    VerafromNJ
    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

    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.