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jess88

Severe stomach symptoms!

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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.

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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/gluten-free/topic/91878-newbie-info-101/

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

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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.  

http://www.cureceliacdisease.org/screening/

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

i hope you feel better soon!  

 

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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!

 

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