Jump to content
  • 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):

Severe stomach symptoms!


jess88

Recommended Posts

jess88 Newbie

Hi new to the forum.. Have been diagnosed with the hq8 gene, and have not had a biopsy yet..still waiting. I do have severe stomach bloating and pain at night which lasts for around 5 hours... where I am in absolute agony, this pain is centre of my stomach, with stabbing sensations in my right side as well as radiating to my back. I  also suffer from constipation, sometime diahrea, and vomiting, low vitamin D and b12 , mouth ulcers and have Underactive thyroid... My question to anyone is although consuming more gluten, some nights my pain is alot worse then other nights, lasting hours...and other days i might just have a headache Is this typical of Celiacs disease? I know people have different symptoms, but i am still not sure if this could be it.. Waiting is painfull when you don't know whats wrong.


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
6 hours ago, jess88 said:

Hi new to the forum.. Have been diagnosed with the hq8 gene, and have not had a biopsy yet..still waiting. I do have severe stomach bloating and pain at night which lasts for around 5 hours... where I am in absolute agony, this pain is centre of my stomach, with stabbing sensations in my right side as well as radiating to my back. I  also suffer from constipation, sometime diahrea, and vomiting, low vitamin D and b12 , mouth ulcers and have Underactive thyroid... My question to anyone is although consuming more gluten, some nights my pain is alot worse then other nights, lasting hours...and other days i might just have a headache Is this typical of Celiacs disease? I know people have different symptoms, but i am still not sure if this could be it.. Waiting is painfull when you don't know whats wrong.

Yeah sounds about normal for a line up of symptoms, You have to keep eating the gluten for the blood testing for 12 weeks prior and 2 weeks for hte following endoscope and biopsy. You can cut down to only eating 1/2 slice of bread a day or a few handfuls of wheat thins.

Many of us have issues with nutrient absorption and common problem foods due to damaged intestines. Magnesium it is different from person to person what form works best but either Natural Vitality Calm (can irritate the gut, it needs to be started at 1/4 tsp 2x daily and slowly raised to the full dose over week or 2) if this is too irritable I suggest Doctors Best Magnesium both are powdered and can be blended with a drink.

B-vitamins I suggest a blend like Liquid Health Stress & Energy in combination with Liquid Health Nurolgoical Support 1tbsp each 3 times a day, again this is blended with a drink, is liquid form making it easy for your body to absorb.

Vitamin D is also available from Liquid Health be careful with dosing on this as too much can trigger vomiting and it stays in your body so not everyone needs it daily.

Painful hours with more gluten yeah. slight residue make me sick, numbness in my extremity, brain fog, bit of Mr Hyde mood swings and alternating D and C. Full on gluten....happened in June of 2016 when I last ate out.....I lost motor control (I have gluten ataxia in addition), and was on the floor in extreme pain vomiting violently for hours so hard I was puking blood. I had a friend who thought I had died kept checking my pulse my heart rate monitor averaged my BPM in the 30s for this, and I turned completely white. Later that night I was able to make it the toilet for the back half of the purge and the rest of the week was fogged blur......

Other foods to avoid, dairy as the enzymes to break it down are produced by the tips of the villi which are damaged first by this disease. Oats are a common cross contaminated foods and some celiacs react to them regardless of gluten in them the same way so we suggest removing these foods from your diet for a while til you heal a bit then trying them again if you wish.

Please look at the following information links as your new to this BUT STAY ON gluten til your testing is done, if you test negative then you might still have NCGI and might want to try gluten free anyway. SO you can start cleaning out and getting ready if you wish for the change over.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

cyclinglady Grand Master
7 hours ago, jess88 said:

Hi new to the forum.. Have been diagnosed with the hq8 gene, and have not had a biopsy yet..still waiting. I do have severe stomach bloating and pain at night which lasts for around 5 hours... where I am in absolute agony, this pain is centre of my stomach, with stabbing sensations in my right side as well as radiating to my back. I  also suffer from constipation, sometime diahrea, and vomiting, low vitamin D and b12 , mouth ulcers and have Underactive thyroid... My question to anyone is although consuming more gluten, some nights my pain is alot worse then other nights, lasting hours...and other days i might just have a headache Is this typical of Celiacs disease? I know people have different symptoms, but i am still not sure if this could be it.. Waiting is painfull when you don't know whats wrong.

Welcome!  

Consider asking your doctor for a celiac blood test panel.  It measures antibodies.  The gene test is not effective for a diagnosis because some 30% of the population carries the genes that can develop into celiac disease and only a very few actually go on to develop it.  It is used more commonly to help rule out celiac disease.  

Open Original Shared Link

Open Original Shared Link

i hope you feel better soon!  

 

TexasJen Collaborator

I'm sorry you are feeling so poorly. Yes, people have a lot of the symptoms that you have, but sometimes not all of the symptoms can be attributed to celiac.

Here are some thoughts....

1. Keep eating gluten but don't overdo it - the equivalent of 1-2 pieces of bread should be enough. Maybe if you limit your gluten a little (and it really is celiac) you will feel a little bit better.

2. Cut out dairy now. A lot of people with celiac can't digest lactose. The symptoms are abdominal cramping, gas, bloating and diarrhea.  That includes yogurt, ice cream, milk, cottage cheese, and other cheeses.

3. You mentioned focused pain - Right pain that radiates to your back - that can be associated with gallbladder problems - ask your doctor about it. Maybe an exam and an ultrasound?

4. Keep a food diary. Maybe try some gluten free meals. If the pain only happens after gluten versus high fat vs dairy etc - it could lead to help you diagnose yourself.

5. Migraines are associated with celiac. Sometimes they go away completely on a gluten free diet, sometimes they are better, and sometimes they are not related. Ask your doctor.

Good luck!

 

Archived

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

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

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...