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

Hi All


scoobydoobydoo

Recommended Posts

scoobydoobydoo Newbie

hi everyone, i just registered today and thought i would introduce myself and give a little background on my condition. i would really love to hear any advice you may have, as i have not been officially diagnosed and do not go to the doctor very often due to a bad health insurance situation. ok here goes:

i started having stomach problems when i was about 14, basically aches pains, nausea, burning and rumbling. at the time i lived in france and went to the doctor regularly, and for years these complaints were dismissed as "stress" "stomach acidity" "female problems" (lol) etc etc.

so i learned to live with them, took a lot of antacids and ate small meals often because i believed that an empty stomach was the cause of the pain. it was annoying, but bearable. french food is based on bread and other wheat products, so i was basically consuming gluten for breakfast lunch and dinner.

then all hell broke loose last year... the pain was so bad that i couldnt bring myself to eat more than two or three small bowls of food per day, in order to try and get proper nutrition i was eating cliff bars and other energy bars with vitamin/mineral additions (and tons of gluten) my stomach was so badly swollen i looked borderline pregnant, i missed lots of classes and to make matters worse i was farting up a storm!! definately not my best semester, lol.

then by chance i did not eat any wheat products for three or four days in a row and felt a remarkable difference, untill i got a bagel at the cafeteria and almost immediately after eating it the nausea, swelling and burning came back. this is how i "diagnosed myself" and have been gluten free since (about 4 months) my stomach is back down to normal size and all my symptoms have radically improved. i accidentally glutened myself twice and suffered the consequences so i am relatively sure that i have celiac disease or some other form of gluten intolerance.

thanks so much to anyone who has read this far! i realize that this is probably not the most interesting topic on the site but please bear with me: i am gradually eliminating anything that contains "natural and artificial flavors" from my diet, as i realize that i should be stricter about not consuming gluten. this is a pain in the ass! do you know of any place i could find a list of "normal foods" that dont contain gluten? (i saw one, but i had to pay a membership and i am too broke for that) anybody here a fan of cream soda? know a brand that does not contain gluten?

also, i live with my dad who cant seem to grasp the importance of avoiding cross contamination... anybody in a similar situation? how do i get it though his skull? i am considering buying plastic tubs in which i will keep all my food but that does not solve the problem of cookware, countertops, silverware, etc.

any other advice is welcome!! have a nice day!


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Welcome!

Here is some info that may be helpful to you as you get started - makes label reading much easier, and you won't have to worry as much about hidden gluten:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Great info to get you started: Open Original Shared Link

scoobydoobydoo Newbie

thank you :) :)

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. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    2. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      12

      gluten free cookie recipes

    4. - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

    5. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

    • Total Members
      132,910
    • Most Online (within 30 mins)
      7,748

    Vicki Swor
    Newest Member
    Vicki Swor
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
    • Charlie1946
      @cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!
×
×
  • 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.