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

Suspected Celiac's Disease Or Gluten Sensitivity: What's The Next Step?

I-want-nachos

Recommended Posts

I-want-nachos Apprentice
I-want-nachos
Posted

Sorry as I know there are tons of variations on this thread I'll try to keep it brief. 

 

I am 22 years old and have been a vegetarian all of my life. My main diet consists of many gluten laden products, toast, grilled cheese with tomato soup, oatmeal, crackers, cookies, etc. About 3 months ago I started to experience really bad stomach pain with diarrhea while at work. I excused myself from work and went home, figuring I was just catching something and rest would fix everything. I felt half better latter on in the day and resumed normal activities. The next weekend I experienced the same sever stomach pain and diarrhea and its been an on again off again problem since. My stomach constantly hurts and feels hungry no matter what I eat. I went to the doctor about 2 weeks ago with the following symptoms: 

 

-abdominal pain (particularly in the intestine)

-gas

-hugely increased appetite but feeling of nausea when thinking about food

-nausea

-constipation

-diarrhea

-extreme fatigue 

-feelings of depression and anxiety

 

The tested me for thyroid issues, diabetes, various STDs, pregnancy, and all came back negative. On a whim I decide to cut out gluten (first gluten free day was Wednesday) and now after 4 days of gluten free living I feel 100 percent better. I feel 100 percent more awake, I am not having any stomach pain or abnormal stools, not feeling depression or anxiety (besides related to not being able to eat nachos lol). 

 

What's the next step? I am waiting on stool results from the lab (to check for parasites). What kind of tests would be recommended they run? How can the tests differentiate between Celiacs vs A sensitivity or intolerance? 

 

If I look back into the past 6 months I can see some of these symptoms in milder form, but anything beyond that I was really symptom free. What would be the reason for so suddenly becoming gluten intolerant? Is that possible? 

 

 

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board.

If you are going to have testing done you need to get back on gluten today. You have to be eating gluten for any testing to be valid. Ask your doctor for a full celiac panel including a total IGA. Also have him test your vitamin and mineral levels to make sure you are not deficient.

Your body may not like it when you add gluten back. Let your doctor know what got relief in your short time gluten free and what happened when you started eating it again.

Your doctor may want you to also have an endoscopy. Some doctors will skip this if blood work is strongly positive. If you are choosing to do the endo make sure to keep eating gluten until that is done. Once the endo is finished get back on the diet. You don't need to wait for the results.

Be sure to read the Celiac 101 thread and hopefully your testing can be done soon so you can start healing if you are someone who needs the diet.

kareng Grand Master
kareng
Posted

Nachos are gluten-free. At least the ones I make at home! Mission chips, cheese, salsa, grilled chicken, canned beans ( refried or otherwise), sour cream..... Just read the ingredients - occasionally wheat is an ingredient. :(

And go back to eating gluten and get the blood tests. Any doctor can order them - family practice, OB/ GYNS, GI, Allergy, etc

w8in4dave Community Regular
w8in4dave
Posted

Wow those are the symptoms I had ! Severe D. Pain!! Ohhh mg the pain!! I was at my wits end!! It will be hard to go back on Gluten but you have got to in order to have the test. If you don't see a need for the test just go Gluten free. It is wiser to get the test done, that way you will be a lil more strict on the Gluten Free diet. And not just ohhh It probably not be celiac .. If you know what I mean. So just go back on Gluten then go get those test!

AlwaysLearning Collaborator
AlwaysLearning
Posted

In addition to any gluten testing, I'd definitely get my vitamin levels checked if you haven't already. B12 deficiency can cause severe abdominal pain which can come and go and is common amongst those who don't eat animal products. Then keep getting all of the vitamins checked for the rest of your life so that you know how much you need to supplement. Vegetarian and possibly malabsorbing due to gluten would be a double whammy for vitamin deficiencies.

Best of luck getting things figured out.

0range Apprentice
0range
Posted

Your body can trigger intolerances quite randomly! Anecdotal evidence here: I had been drinking milk all my life, every single day, until the age of 12 when I literally woke up one day and could not digest dairy anymore. In the case of celiac, it can be due to a major trauma (such as a surgery or accident), a period of stress in your life, a virus you contracted etc. people typically have a gene for it that is randomly triggered by various environmental factors. Sometimes the symptoms are not very obvious leading you to believe that it happened overnight, as you mentioned you were having 'mild' symptoms before that you did not pay that much attention to. It's really only when you get the diagnosis that you realize, "OH so that was what was wrong..."

  • 3 weeks later...
I-want-nachos Apprentice
I-want-nachos
Posted
  • Author

Hi! Thanks for all of the helpful replies, I still haven't been in for further testing although I am making an appointment with a GI specialist tomorrow. 

 

Contrary to much of the advice I've kept gluten free since making my first post 3 weeks ago. Up until a few days ago I was feeling great not eating gluten, but this past weekend I started to feel totally awful again and I am wondering if 1- it really has nothing to do with gluten at all and the fact that I've felt well is coincidental 2- I also have other food related allergies (maybe dairy?) 

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

Celiac.com Sponsor (A8-M):


w8in4dave Community Regular
w8in4dave
Posted

It does take more than 3 weeks to feel better. I have been 3 months and I still have bad and good days!! Sometimes you find your not as Gluten Free as you think,There is alot of hidden Gluten or Lactose will sometimes bother people who are Celiac or Gluten sensitive... Alot of people here suggest a food log. Write down everything you eat .. And when you feel bad .. You may find the culprit!! Good luck !! 

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi! Thanks for all of the helpful replies, I still haven't been in for further testing although I am making an appointment with a GI specialist tomorrow. 

 

Contrary to much of the advice I've kept gluten free since making my first post 3 weeks ago. Up until a few days ago I was feeling great not eating gluten, but this past weekend I started to feel totally awful again and I am wondering if 1- it really has nothing to do with gluten at all and the fact that I've felt well is coincidental 2- I also have other food related allergies (maybe dairy?) 

While I realize that you want to feel better as soon as you can you have to keep in mind that if you need or want a diagnosis you HAVE to keep eating gluten until testing is finished.  After we stop eating gluten when we start again it can make us quite ill but you do need to get back on it for testing.

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.