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

Severe stomach symptoms!

jess88

Recommended Posts

jess88 Newbie
jess88
Posted

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
Ennis-TX
Posted
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
cyclinglady
Posted
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
TexasJen
Posted

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.

Go to topic listing

  • 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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    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

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.