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

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

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

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

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

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

Fire Fairy Enthusiast

If at all possible get a new Doctor!

w8in4dave Community Regular

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,985
    • Most Online (within 30 mins)
      7,748

    Seashells
    Newest Member
    Seashells
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.