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

Hello new here - need advice

PJP

Recommended Posts

PJP Rookie
PJP
Posted

Hello,

I went to my GP yesterday about my abdominal pains that I have been having since Wednesday (still going on now). I have had issues with my adomen like this before and other symptoms and from what the doctor said and from what I've gathered its most likely celiac.

She told me that for my blood tests to work I'd need to eat gluten for two weeks and I took this advice and I also need an ultrasound. But here I after eating pizza with my pains getting worse and buscopan barley helping and struggling to type because I'm in so much pain. Sorry if it makes no sense.  

Im thinking of goung to ae tomorrow as its so bad. Any advice would br sppricatef. Im sorry this couldn't be better. Thank you. 

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted
2 hours ago, PJP said:

I went to my GP yesterday about my abdominal pains that I have been having since Wednesday (still going on now). I have had issues with my adomen like this before and other symptoms and from what the doctor said and from what I've gathered its most likely celiac.

She told me that for my blood tests to work I'd need to eat gluten for two weeks and I took this advice and I also need an ultrasound. But here I after eating pizza with my pains getting worse and buscopan barley helping and struggling to type because I'm in so much pain.  

Hello and welcome :)

Were you previously gluten free? For celiac blood tests to work you need to have been eating gluten for several weeks beforehand. Two weeks may not be enough for an accurate result :( It may be, people differ, but if the test is negative be aware it could be due to such a short time on gluten. 

A gluten challenge can be rough, although I found in my case that it got easier to endure as it went on (note I tested negative). If your pain is intense do go to A&E to ensure that there's not another factor at work.  

There's some info on testing here. 

 

PJP Rookie
PJP
Posted
  • Author

Thank you :) I'm making my way up to A&E in a bit. I went gluten free for 6 days and that was 3 days ago. I'm not sure if thats enough? Ive only ever been gluten free for those 6 days.  

Jmg Mentor
Jmg
Posted

I think that explains your doctors advice. I think she's thinking that with only 6 days off gluten that two weeks back on should be enough time. 

As to whether 6 days would be enough to throw a result, I honestly don't know. As far as I can work out people's reactions vary enormously. 

did you go gluten free before or after the stomach pains?

PJP Rookie
PJP
Posted
  • Author
6 hours ago, Jmg said:

I think that explains your doctors advice. I think she's thinking that with only 6 days off gluten that two weeks back on should be enough time. 

As to whether 6 days would be enough to throw a result, I honestly don't know. As far as I can work out people's reactions vary enormously. 

did you go gluten free before or after the stomach pains?

Ahh I see. After. I went to A&E and they said to go for blood tests on Tues. I've been given tablets for acid reflux as well. 

Jmg Mentor
Jmg
Posted
Quote

Ahh I see. After. I went to A&E and they said to go for blood tests on Tues. I've been given tablets for acid reflux as well

I hope you're feeling better now.

When you get the test results you can post them here if you'd like some input from the members. They were really helpful with me when I was going through the diagnostic process :)

Once you've completed testing you may want to go gluten free regardless of the results as it seems as if your body is reacting strongly to it, celiac or not...

 

PJP Rookie
PJP
Posted
  • Author

Thank you so much and I will do. Tbh as of now things aren't much better, going for bloods tomorrow. Also I will post about my results :)

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

Celiac.com Sponsor (A8-M):


PJP Rookie
PJP
Posted
  • Author

Thank you so much and I will do. Tbh as of now things aren't much better, going for bloods tomorrow. Also I will post about my results :)

Jmg Mentor
Jmg
Posted

Sounds good. Try not to worry, lots of people have been where you are and come through it feeling better than they thought possible. :)

Ennis-TX Grand Master
Ennis-TX
Posted

On the gluten challenge you do not have to eat a ton of gluten, you cant eat mostly gluten-free, and just have half a slice of bread or a few crackers before bed and try to sleep off the worst of it. You just have to consume it daily to keep the antibodies up for the testing.

plumbago Experienced
plumbago
Posted
10 hours ago, Ennis_TX said:

On the gluten challenge you do not have to eat a ton of gluten, you cant eat mostly gluten-free, and just have half a slice of bread or a few crackers before bed and try to sleep off the worst of it. You just have to consume it daily to keep the antibodies up for the testing.

I wonder if you meant "you can eat mostly gluten-free, and just have half a slice..."

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. 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...
    2. 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?
    3. 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...
    4. 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....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

    • 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! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.