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

Celiac Symptoms But Doctor Doesnt Believe In Food Intolerances

Jo1977

Recommended Posts

Jo1977 Newbie
Jo1977
Posted

Im sorry if there has already been lots of posts about this but Im seeing my doctor tomorrow & I want to make sure I know all of my facts & what to ask for!!!

 

I have lots of celiac symptoms (bad stomachs, extreme tiredness, pms, swollen hands, ibs, restless legs, sort eyes, swollen tongue, mucus down my throat, chest pains, joint pains, red cheeks etc!!  I have been gluten free for nearly 2 weeks & feel so much better - the main thing is I no longer feel depressed!

 

When I last saw my doctor (Ive been going recently due as I binge eat on chocolate & feeling ill) I asked about food intolerances but he didn't think it was that & wanted more blood tests to rule out thyroid & diabetes etc & if they all come back fine then he would think about referring me for psychiatric help!!!

 

Ive already had the basic blood test a few times & its always come back negative.  Now Ive think about it I don't know if that could be because I cant eat cereal without getting a sore stomach & hardly eat bread.  I also don't have much crisps, cakes or biscuits (my logic that makes me think I can eat more chocolate as Im not eating other bad foods!!!!).

 

The thought of eating gluten again for more tests scares me (I had bread yesterday & even though I didn't get a bad stomach my mood has gone down again, headaches, sore eyes & extremely tired again) but my 7 year old son seems to be going the same way as me so would like to get this sorted for him (& maybe my 2 year old) & to also show everyone Im not a hypochondriac & have been ill for the last 14 years (even though I think it has been for longer).

 

Any advice on how to convince my doctor to do more tests would be greatly appreciated.

Thanks

Jo

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

You certainly may have Celiacs; however, you must be eating gluten before any celiac testing.  Wait until the results of your thyroid panel (did the doc order a thyroid antibody test?) and diabetes test.  Then you can push for the celiac blood test.  Are you anemic or have other deficiencies?  I'm sure others on this site can go into more depth.

 

YOU MAY HAVE AN INTOLERANCE/ALLERGY TO CHOCOLATE!  Sad, but true.  The very foods we crave and adore, are the foods we shouldn't eat.  I should know, because my husband can not eat chocolate!   He's been gluten free for 12 years but still has the chocolate intolerance.  I don't feel so bad for him since I'm gluten free, plus I'm  allergic to eggs, dairy, nuts, garlic and mushrooms.  Ugh!

 

By the way, his chocolate symptoms are comparable to celiac symptoms.   Body aches, headaches, irritability, fatigue, feeling low, etc.  

 

Try to diversify your foods (fresh whole foods).  We tend to eat the same old foods day in and day out.  Maintain a food diary.  It can be helpful in identifying foods that bother you.

 

Good Luck!

Gemini Experienced
Gemini
Posted

You need a new doctor.  Anyone who told me that I may need psychiatric help because of stomach problems and perceived binge eating would not be getting any more of my business.

Sometimes we crave foods that contain vitamins and minerals we are deficient of, without knowing that's the problem.  Also for the reasons that cyclinglady stated.  Please dump this turkey and find someone who listens and will do the testing you need!

srall Contributor
srall
Posted

You need a new doctor.  Anyone who told me that I may need psychiatric help because of stomach problems and perceived binge eating would not be getting any more of my business.

Sometimes we crave foods that contain vitamins and minerals we are deficient of, without knowing that's the problem.  Also for the reasons that cyclinglady stated.  Please dump this turkey and find someone who listens and will do the testing you need!

 

 

You need a new doctor.  Anyone who told me that I may need psychiatric help because of stomach problems and perceived binge eating would not be getting any more of my business.

Sometimes we crave foods that contain vitamins and minerals we are deficient of, without knowing that's the problem.  Also for the reasons that cyclinglady stated.  Please dump this turkey and find someone who listens and will do the testing you need!

YES. 

dilettantesteph Collaborator
dilettantesteph
Posted

I too agree with Gemini.  I would find a new doctor.

Fire Fairy Enthusiast
Fire Fairy
Posted

If at all possible get a new Doctor!

w8in4dave Community Regular
w8in4dave
Posted

That is just crazy!! I know my Dr. Doesn't believe mine is food either!! But I decided I don't need him to tell me what I already know!! I would really push the subject! Or like everyone eles is saying! Get a new Dr.!! He is saying "Your crazy"! Thats crazy in it's self! 

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

You need a refferal to a gastroenterologist.  Celiac and gluten intolerance symptoms do match a few other disorders.  (H. Ploryi infection, hernia, Eosinophilic disorders, parasite infection, and a few others)  An endoscopy with biopsy can help rule out or diagnose your illness.

 

I would love to visit your doctor and show him how food intolerance can produce projectile vomit in 15 minutes.

 

As for the case of Nuerologist consult...  they are storting to consider abdominal migraines.  To get this diagnoses, you have to have every type of testing done with negative results. (I did not opt for this testing for my daughter.  She was diagnosed with both Celiac and Eosinophilic Esophagitis.)

 

Other advice here is right on track.  Food journal, new doctor, and testing ASAP before going gluten free.  (if the diet helps you, you'll never willingly eat it again~testing is useless if you are already gluten free. You can be gentic tested at any time but it rarely used for a definative diagnoses.)

BelleVie Enthusiast
BelleVie
Posted

Find a new doctor. You deserve to have a doctor who respects you, who cares about you, and who takes you seriously. You aren't a child. You know your body and your symptoms. Listen to your intuition! 

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.