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

glad you're here

CherylS

Recommended Posts

CherylS Apprentice
CherylS
Posted

Hello,

I'm a pretty tough lady, I'm a nurse so I ignore a lot of symptoms and keep going about my day.  I have been having nausea and a weird feeling in my mouth every time I eat for at least 6 months.  I noticed my lips feeling almost numb after eating too.  Sometimes my inner ears itch after I eat, I never put this all together.  I have a hiatal hernia, I blamed my symptoms on that, it usually causes heartburn, I just figured it was my body being weird.

A couple months ago I was turned away from donating blood because my hemoglobin was too low, it was 9.4 and the blood bank nurse suggested I go to my doctor because that was really low and I looked pale.  I'd been having heart palpitations as well, so I decided to go see my doctor.  I went and after blood work I was diagnosed with iron deficiency anemia.  I started eating more iron rich foods, taking a supplement, etc.  I'd been tired too, I  blamed the anemia.

I was really sick at work the other day after eating breakfast, my coworker said, I bet you are lactose or gluten intolerant.  I did nothing with this until today, I figured it was just her grasping at straws.

I looked up celiac disease and saw some of the common symptoms and conditions that could be related and my jaw dropped.  At the top of the list was autoimmune hepatitis, I was diagnosed with that 15 years ago.  I have so many of the symptoms, I thought my numb tingling hands were from typing on my phone, I thought the joint pain was my autoimmune hepatitis flaring up.  I thought the gross bowel movements and flatulence were from the fruits, vegetables, whole grains I've switched to.

I'm going to call my doctor tomorrow to be seen so we can start the process of being tested.

I can't imagine the joy at feeling normal again.  I'm actually gaining weight, always hungry, but too tired to exercise.  I also eat sometimes in the hope of sopping up the nausea, thinking there is acid in my stomach.

Even if my tests come back negative, I'm going to try to go gluten free to see if it helps.

Sorry for the rambling, I'm just excited at the potential for answers. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Glad that you found us!  Here is the complete celiac blood panel.  

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
Keep consuming gluten until all testing is complete.
 
(Source: NVSMOM -- ?)
 

I would insist on the full panel since you already have another autoimmune disorder.  Why?  I guess I would like everyone to get the complete panel to insure that no one is missed!  Besides, I tested weird and I am glad that my GI ordered th complete panel.  My main symptom was Anemia and I have Hashimoto's Thyroiditis.  

Welcome me to the forum!  

 

 

squirmingitch Veteran
squirmingitch
Posted

And stand over the doctors shoulder & make sure he/she orders the complete panel!!! SO many don't. And believe it or not, the majority of docs DO NOT know what the full panel is OR what the symptoms of celiac disease are. They think it's just GI symptoms & you have to be ultra skinny. You are a nurse & you didn't know - docs don't either. Good for your coworker recognizing you might be suffering from celiac. Give her a gold star!

 

And since this can never be emphasized enough.......

DO NOT STOP EATING GLUTEN UNTILL ALL TESTING IS COMPLETE & THAT INCLUDES AN ENDOSCOPY.

And even if the doc tells you you can stop eating gluten before testing is complete --- don't listen.

CherylS Apprentice
CherylS
Posted
  • Author

Thank you,

Squirm, I didn't eat gluten today just because I wanted to see if there was a difference.  It feels so good not to walk around nauseous with my mouth watering all day, I will eat gluten with dinner tonight.

cyclinglady Grand Master
cyclinglady
Posted

Glad you saw results so soon, but most of us take weeks, months to a few years to resolve all symptoms.  Keep eating gluten as you really want to get a definitive answer to your health issues.  You don't have to go crazy.  A slice of bread or two  (or equivalent per day) is recommended by the University of Chicago.   They have a great celiac website and are one of the leading research groups in the US. 

nvsmom Community Regular
nvsmom
Posted

:) Agreed. Keep eating gluten until those tests are done.  And let us know how the tests go.  Good luck!

squirmingitch Veteran
squirmingitch
Posted

Some people find it helpful to eat the gluten before bed so that the worst effects occur overnight & they might not be so bad off at work the next day. It works for some & not for others. Worth a try though.

When you get your results then come back here & read the Newbie 101 in the Coping section so you can learn how to keep yourself safe. There is a steep learning curve to the diet & it's scary at first & there is a mourning period but once you get the rules down it will become second nature.

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

Celiac.com Sponsor (A8-M):


CherylS Apprentice
CherylS
Posted
  • Author

I was just coming back to say that I think I have ulcers or something, because my nausea is still there, but my mouth feels better.  I'm eating bread at dinner every day until my appointment, but trying to cut the gluten containing products out of my other meals.  I wonder if I have a wheat allergy, because I get the itchy inner ears and lips and mouth symptoms when I eat breads or pasta.  I'm going to get the testing done no matter what, but I'm starting to lean away from celiac disease. 

My appointment is October 21, I'm going to try not to think about anything too much until then.  

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
      4

      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...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      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....
    3. 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!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    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

      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!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • 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.