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

Self Diagnosis


Curlyqueen

Recommended Posts

Curlyqueen Rookie

Like many of the post/people on this forum I'm in a pre diagnosis phase where I'm trying to make sense of symptoms that makes little sense. Anyway I finally saw a GI and through genetic testing I found it was negative for Celiac or how I would like to think of it as very unlikely that I have celiac. No one else in my family has it so I have started to consider that my digestive issues could be an ulcer caused by too much asprin(I was taking it for my migraines) but I feel a lot better eating gluten free and I haven't found that certain foods like spicy foods disagree with me. However on two occasions coffee did not agree with me and it was from home. Also I can't tolerate alcohol. I have always had some difficulty with alcohol but last year I had three sips of a beer and immediately felt super drunk and sick. Couldn't walk straight, felt really hot, nausated and just plain awful. Thats when I realized I might have a digestive issue and thats what eventually lead me to celiac. But this could also happen if I had an ulcer. So I'm going back and forth between possible ulcer( or ulcers) and gluten sensitivity.

Regardless of the outcome I've decided that eating gluten free is probably going to be something I do for the rest of my life. I was wondering for those who are self diagnosed how did you decide that you didn't need a medical diagnosis? Did you ever wonder that it could be something else?


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

If it's something else, eating gluten-free won't stop it. If you don't need a letter from a doctor for something (school, work, military), then you don't need a medical diagnosis. You can choose to eat anything you want without a doctor's permission.

Curlyqueen Rookie

If it's something else, eating gluten-free won't stop it. If you don't need a letter from a doctor for something (school, work, military), then you don't need a medical diagnosis. You can choose to eat anything you want without a doctor's permission.

Eating gluten free cuts out wheat which if its a wheat allergy then of course one is going to feel better gluten free. In my case I'm still considering that it could be a specific allergy to wheat. I guess for myself personally I'm finding that maybe its safer to rule out everything else it could be like Chron's or IBS before settling on a Gluten intolerance (that just started out of the blue). Thanks for your response gave me something to think about.

Metoo Enthusiast

Eating gluten free cuts out wheat which if its a wheat allergy then of course one is going to feel better gluten free. In my case I'm still considering that it could be a specific allergy to wheat. I guess for myself personally I'm finding that maybe its safer to rule out everything else it could be like Chron's or IBS before settling on a Gluten intolerance (that just started out of the blue). Thanks for your response gave me something to think about.

As my allergist pointed out a wheat allergy is so rare, and often you find out early in life not later.

I would definitly go gluten free if there is any doubt, but you have to sustain it for a while to be able to tell.

I tried 2 years ago and felt no difference, part of my problem was I was still eating gluten-free oats (a problem for me)...and I needed to eat ONLY things that specifically said gluten-free. This time I went gluten-free a lot more carefully and after the first week someone pointed out the oats and it was definitly part of the problem.

Skylark Collaborator

I wasn't getting any help from doctors and celiac wasn't a "hot topic" back when I figured out my inability to eat gluten. I was diagnosed with IBS and gastritis and told to avoid coffee. If only they had said wheat... Your doctor can rule out Crohn's while you're on the gluten-free diet. Alternatively you can go back on gluten and see if your symptoms return. If they come back full force you know you figured it out. :)

Archived

This topic is now archived and is closed to further replies.

  • 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. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    3. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    4. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @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
      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! 
×
×
  • 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.