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

What do you think?

Rachaelob93

Recommended Posts

Rachaelob93 Newbie
Rachaelob93
Posted

Hi, I'm new here and a little unsure what to say so I'll just go ahead. 

For 22 years I've been eating yummy bread and breaded chicken strips and every other gluten containing food under the sun! I have often but not always suffered from what I call a "food baby" after eating, I thought I was just very full and sometimes after eating out I'd have to sit for half an hour before I could move because I felt so full, even if I didn't eat so much.

I've recently had some stresses in my life, my mum was diagnosed with cancer, I am in the final year of my degree and my boyfriend decided he wanted a military career and we travelled from the UK to Canada in order for him to have an operation. Whilst we were there he turned 21 and so we went to New York to celebrate, after a 13 hour train journey we reached the hotel where we were on the 30th floor, it was late so we ordered pizza and within half an hour of eating a slice my appetite had vanished and I went very dizzy and lightheaded and started to feel like I would be sick and faint, we thought it could be motion sickness due to being on the 30th floor and possibly exhaustion from the journey, I was also feeling very anxious and panicky throughout. The next day we were moved down to the 4th floor and that seemed to help, however the day after that we went to planet Hollywood for dinner (burger and fries) where my appetite failed me and I got very dizzy, not wanting to spoil the night I kept quiet thinking it might pass. We then went on to the theatre to watch a show, where I got worse, thought I was going to be sick, cramped up temperature was up and down and I was shaking, my heart rate was very high. In the end an ambulance was called and I was taken into hospital where they could not understand what was going on, eventually we put it down to an allergy to the ibuprofen in America, though I have never had an issue with the ibuprofen in the UK.  Since then I have been unwell on and off and quite suddenly I began to feel sick after eating every meal, I get severe nausea, stomach cramps and bloating and my concentration completely goes, I'll be lightheaded and very irritable with bad gas coming in tiny gurgling burps (I can't burp properly ?). I also have quite bad bowel movements which can either be loose or completely constipated and sometimes it's almost normal but covered in a clear slime. (Not nice I know, sorry!) 

On Christmas eve I ate some cheese and got a few little cramps, on Christmas day I spent the day in bed feeling dizzy and sick and bloated and generally unwell, I put it down to the cheese, however it was a family buffet with lots of opportunity for gluten contamination and I have been avoiding gluten since my blood test 2 weeks ago.

I've had a blood test for coeliac and am still awaiting the results, I am also considering lactose intolerance as I apparently had that as a baby. I feel totally fed up not knowing what's doing this to me, my mum and dad seem rather in denial and roll their eyes or dismiss me when I mention research that I have done and my ideas on what could be causing me to feel this way, they have however been buying me gluten free foods. 

So I was wondering what you think? You are obviously a lot more knowledgeable on coeliac and gluten intolerance than me and I'd really appreciate any advice or help you can give me. I feel quite alone knowing that nobody in my family other than a second cousin who we rarely see can understand how I'm feeling (if it is coeliac) and I feel like I want to talk about it, but I can tell people are getting bored or just don't want to hear it or consider it as a possibility.

Sorry for the long rant! I hope you've all had a good Christmas ?

 

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

Celiac.com Sponsor (A8-M):


CherylS Apprentice
CherylS
Posted

Hi and welcome.

You definitely have a lot going on.  Hopefully you get the results of your tests soon and  you'll be able to go from there.  If your celiac panel is positive, will they do a biopsy to confirm?  If so, you will have to eat gluten until the biopsy is complete.

I'm no expert, but I believe people with celiac can have problems with lactose as well since their intestines are damaged.

Someone will come along who knows more than me, I just wanted to say hi so you didn't feel like nobody was reading your post.

Rachaelob93 Newbie
Rachaelob93
Posted
  • Author

Thank you!  And yes I believe the swelling and damage to the villi in the intestines limits the absorption of lactose which is why I'm also considering that as a possibility. 

Hopefully I will get my results on Tuesday, I won't be going ahead with any more tests as I can't handle how I feel when I'm eating gluten, it's affecting my degree so I have decided regardless of the results to do a food diary to help me identify if gluten really is the problem.

cyclinglady Grand Master
cyclinglady
Posted

Many celiacs have a "temporary" intolerance to lactose that can resolve with healing provided that you are not one of the many people who naturally become lactose intolerant due to aging or genetics.

Read this celiac.com link for diet tips, cross contamination, etc.:

https://www.celiac.com/celiac-disease/the-gluten-free-diet-101-a-beginners-guide-to-going-gluten-free-r1640/

Stick to whole, easy-to-digest foods for a while.  Damaged guts have a hard time digesting anything! 

 Welcome to the forum!

Jessica77 Newbie
Jessica77
Posted

My daughter had a lot of the same symptoms you are having. She had her blood tested and it came back positive for Celiacs disease. She had a biopsy to confirm. I think that is the normal procedure to diagnose. I will tell you she was failing pretty much all her classes and was always tired and felt sick. She has been gluten free for over 6 months and this past nine weeks was one grade away from the A/B honor roll. So there is hope you will feel better and have better luck with your degree. Going gluten free at first was really hard and she shed many tears in the grocery store aisle. But it gets easier and your will find foods you really enjoy. 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. 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):

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.