Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Upper Middle Pain.. Gluten Contamination What To Do?


kibou

Recommended Posts

kibou Rookie

After a stool sample saying i was gluten senstive i stopped eating gluten and though it took awhile i was relieved of many symptoms. I still had cramps here and there that were severe but they didn't seem to last as long ect.

well after some events and learning i was no fun all i did was stay indoors and my friends wanting to be able to have funa nd go to the olive garden without feeling bad looking at me.. i decided to be brave and even though i knew the red lobster was a no no and certainly not gluten friendly.. i thought i don't care! i'm gonna have fun damnit! how much gluten could be in steamed crab legs anyway.

I shared an order or stuffed mushrooms. I reread it over and over and knew it was risky and made sure my friend ate it first and asked if it tasted bready (broiled mushrooms stuffed with cheese lobster and crab..i thot not much room for them to add anything else)

well after the appetisers of which i ate maybe 5 tiny mushrooms i knew something tasted.. i dunno good? lol and even tho i had gotten a fruity drink from there..well the room got wavey like iw as drunk which scared me a little... one sip of a watered down fruit pina coloda thing couldnt have gotten me drunk right? but when the crab came i got over myself and was determined to have a good time and felt better.

well that was several days ago.. maybe 4.. and since then it has felt like there is a ball glued inside my chest.. middle upper .. right between my loer ribs.. it hurts is a weird way. i lept up in panic all night tonight.. starting to lose it /sigh..

I figured maybe i was intolerant and not have celiac (yeah i know no more tests please rather just live without).. but dang it hurts.. and oh i fergot to mention i consequently looked up the recipe for lobster stuffed mushrooms and they all have oyster crackers)

I figure well even if i screw up i'll have pain but it will pass through my system.. but several days later it still feels so high in my tummy for such a tiny amount of gluten...

what do you do if you ingest gluten? how do you get the pain to stop or pass through.. heck even my heart/chest is starting to hurt.. do i have to start all over again and it will be MONTHS before i start to feel better again? .cry

i'm tired of being so sick and everyone being sick of me.. ive lost my husband over this because i cant go out and have fun and he says this is not how he wants to spend his life while he's young. im sick of this!

ok small rant

anyway.. is this common.. usually i get severe cramps and have to run to the bathroom (still do even tho gluten free just cut down by 90%.. but this mid upper pain is driving me nuts.. its like eating its way to my lower sternum :(

i dont have a car or dr as i just moved here.. and im sure they'd make me swallow a camera anyway.. not something m interested in doing just to tell me yah its inflamed.. im not dumb i can feel theres something wrong

what do you guys do for this pain how long till it will go away? it has taken me forever nearly 7 years to feel this well .. i don't want to start over

btw if you might know why i still get cramps now and then let me know too.. i keep a pretty good diary and i know my body hates any type of oil..but sometimes it does it just randomly.. pretty soon ill have nothing left to eat..


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



Celiac.com Sponsor (A8-M):



eKatherine Apprentice

Just a suggestion: having a person without gluten intolerance taste something is not a test of whether it is gluten-free. Stuffed mushrooms you would order in a restaurant always contain a substantial amount of bread crumbs and/or flour.

If you are going to eat out, you need to go prepared to only eat the things you know are safe, not merely avoiding the things you are positive are unsafe. If you're not sure something is gluten-free, you can assume it is not.

Soo B Newbie

I hope you come around and start feeling better soon. On a semi-related note:

ive lost my husband over this because i cant go out and have fun and he says this is not how he wants to spend his life while he's young. im sick of this!

If you litreally lost your husband over you needing to go gluten-free, you lost nothing but dead weight. You deserve better than that.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to JuggaloDad's topic in Parents, Friends and Loved Ones of Celiacs
      3

      My 16yr daughter was recently diagnosed

    2. - JuggaloDad replied to JuggaloDad's topic in Parents, Friends and Loved Ones of Celiacs
      3

      My 16yr daughter was recently diagnosed

    3. - Scott Adams replied to JuggaloDad's topic in Parents, Friends and Loved Ones of Celiacs
      3

      My 16yr daughter was recently diagnosed

    4. - JuggaloDad posted a topic in Parents, Friends and Loved Ones of Celiacs
      3

      My 16yr daughter was recently diagnosed

    5. - Wheatwacked replied to Kj44's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Testing


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,189
    • Most Online (within 30 mins)
      7,748

    Kellik
    Newest Member
    Kellik
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @JuggaloDad, Kudos to you for being such a concerned parent! Gluten can attach to opioid receptors throughout the human body, including the brain.  Gluten in the brain can be attacked by tTg 6 antibodies.  This inflammation can cause ataxia.  TTg 6 antibodies are also found in diseases involving ataxia such as Alzheimer's and Parkinson's.  Serum Antibody tests for Celiac Disease check  for tTg 2 antibodies.  TTg 3 antibodies are found in Dermatitis Herpetiformis.   THC can dislodge gluten from the opioid receptors in the brain and body, taking gluten's place on the opioid receptor.  THC is then easier to remove from the opioid receptors than gluten.  THC is being used medically in opioid addiction cessation.  THC has other benefits such as calming mast cells so they don't release histamine.  Histamine lease from mast cells causes inflammation and is part of the autoimmune reaction in Celiac.   Thiamine Vitamin B 1 is instrumental in brain and nerve health.  Opioid and THC use can deplete thiamine stores.  Malabsorption due to Celiac Disease can prevent those stores being replenished.   Early Thiamine deficiency disorder symptoms includes eating disorders such anorexia and bulimia.  Ataxia is improved with Thiamine.  Anxiety and depression are also improved with Thiamine.  Thiamine helps stop mast cells from degranulating and releasing histamine.  Gastroparesis and Gastrointestinal BeriBeri are improved with Thiamine.  Thiamine with Pyridoxine and Cobalamine have analgesic properties.  Thiamine in the form Benfotiamine promotes gastrointestinal health.  The form of Thiamine called TTFD (tetrahydrofurfuryl disulfide) helps immensely with the ataxia and neurological symptoms. Doctors undervalue the benefits of supplementation with essential nutrients in Celiac Disease.  Correction of nutritional deficiencies quickly in Celiac is important to health and recovery.  Most blood tests for vitamin deficiencies are not accurate.  None the less, discuss supplementing with doctors and nutritionists.   Do look into a low histamine Paleo Diet like the Autoimmune Protocol Diet developed by a Celiac, Dr. Sarah Ballentyne, shown to promote intestinal healing.  This is the diet that really improved my health along with supplementing the essential vitamins and minerals.   After struggling with Gastrointestinal BeriBeri, Ataxia and eating disorders myself, TTFD has made a world of difference.  My blog has more information.  I'm happy to share what I've learned on my journey.
    • JuggaloDad
      Thank you Scott, it means a lot especially with the speed you responded.. In life I've learned that you got to be openminded and open to understand and adjust  .Thank you again I hope she will come around to the adjustment as it's not going away and it's for her own comfort and health in the long run....Thanks
    • Scott Adams
      I’m so sorry to hear about the challenges you and your daughter are facing. A celiac diagnosis, especially during adolescence, can be overwhelming, and it’s understandable that she’s struggling with the lifestyle changes it requires. Coupled with the complexities of self-medication and signs of an eating disorder, this is undoubtedly a difficult time for your family. It’s great that you’re already engaged in therapies—this is a crucial step. For celiac disease, connecting with support groups (like those from the Celiac Disease Foundation) and working with a dietitian specializing in gluten-free diets can help ease the transition. For the emotional and mental health aspects, family therapy or support groups for parents of teens with similar struggles might provide additional tools and comfort. You’re doing the right thing by seeking help and information—stay patient and compassionate with both your daughter and yourself as you navigate this journey together.
    • JuggaloDad
      It is only the very start of this journey but it's actually been one of the hardest things we have had to deal with as parents.she started complaining about her stomach and after months and test after test the diagnosis came back as Celiac disease but while this was happening she has been self medicating with THC and also started making showing signs of a eating disorder, we are in therapies of all sorts in relation to these issues and well I'm just reaching out to find any and all information tools and knowledge as at 16 my daughter is fighting the change but it will be with her for a lifetime so I just trying to do all I can do ... If anyone can help with anything like anything mentioned please reach out to me.....thank you all for existing 
    • Wheatwacked
      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
×
×
  • Create New...