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

Do You Think I Have celiac disease?

glutenfreejenny

Recommended Posts

glutenfreejenny Apprentice
glutenfreejenny
Posted

I'm a college student and don't have heath insurance. I can't afford to go get tested, but I'm almost 90% sure it's celiac disease. I just hate going out and saying I have celiac disease when I haven't been tested. Here's my symptoms. Please let me know what you think!! :)

..I've had stomach problems my whoooole life. When I was about 14 I was diagnosed with food allergies to soy, corn, and tomatoes. I cut them out and wasn't having any allergy attacks, but still didn't feel better. (I've never had an "allergy attack" so the diagnosis was a little funny).

..I menstruate maybe once every 7 months or so if even. A few days after I make myself go off gluten I get my period! That for me is a huge sign.

..I have trouble sleeping, and sometimes restless leg. When I try to run I get out of breath really really fast and have really bad leg pains. It's weird because I'm on my feet all day, and am not really out of shape.

..I have ADD. I have a really hard time concentrating, even if it's something I'm really interested in.

..I am constipated all the time. A few days go in between bowel movements. I don't think that's normal?

..I rarely get diarrhea but am always bloated and have been diagnosed with acid reflux

..Sometimes I get really bad stomach pains that make me fall forward in pain.

..I have what was diagnosed as Exzema and it doesn't go away. It's on the back of my arms, the front of my lower arms, top of my legs and sometimes lower and my stomach.

..I was diagnosed with anemia when I was about 12 or so and think I still am

..I have very low energy, and don't sleep much at night. Sometimes I will sleep all weekend because I'm so exhausted.

..I'm a positive person, and see the good in everything but for some reason get really bad depression. I think it's very related to food and thinking everything I'm eating is poisoning me. The side effects of eating gluten with celiac disease scare me a lot. I've been in college since I was 18 (6 years!) and have only been able to work a lot of the time because I've been too sick.

..I swear there's more I can't think of now...

ALSO when I go off gluten should I also go off my allergens? Going of gluten alone is 100% better than when i went off all my allergens alone. Going off it all would leave me eating strictly rice, and fruits and veggies. Not much to eat that has no gluten, soy, corn, and tomatoes.

Thanks so much. :)

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

Celiac.com Sponsor (A8-M):


maile Newbie
maile
Posted

You do sound like you could be one of us!

If you really want a medical diagnosis then you have to keep eating gluten and get a doctor to run the celiac panel of blood tests for you.

You said you are a student and have no insurance, is there a free clinic at the college you could go to? (Sorry if that sounds odd but I'm Canadian and that's what we'd do up here) If not perhaps someone more familiar with the med system could suggest something.

Barring the ability to get a medical diagnosis then you could just go gluten free and see what happens, reaction to the diet is usually the best "test" there is.

ALSO when I go off gluten should I also go off my allergens? Going of gluten alone is 100% better than when i went off all my allergens alone. Going off it all would leave me eating strictly rice, and fruits and veggies. Not much to eat that has no gluten, soy, corn, and tomatoes.

Are you vegan? what about beans? legumes? nuts? you might also want to google "Karina's Kitchen" it's a blog by a vegan celiac with tons of recipes, that might give you some ideas.

if you go gluten-free you could then, a few months later, try adding back in your "allergens" 1 at a time (making sure there are no other problem foods being consumed) so you could see if you are indeed allergic.

glutenfreejenny Apprentice
glutenfreejenny
Posted
  • Author
Are you vegan? what about beans? legumes? nuts? you might also want to google "Karina's Kitchen" it's a blog by a vegan celiac with tons of recipes, that might give you some ideas.

if you go gluten-free you could then, a few months later, try adding back in your "allergens" 1 at a time (making sure there are no other problem foods being consumed) so you could see if you are indeed allergic.

Yeah I was thinking of starting insanely strict for a few months, then slowly adding in the allergens.

I am not vegan but that's a good idea. I do eat beans and veggies and am not a picky eater but I'm going to have to go very very basic. When I go soy free I can't use any cooking sprays or use vegetable oil or butter so I have to use other oils and be very very careful. But switching out other oils shouldn't be too bad.

one more mile Contributor
one more mile
Posted
ALSO when I go off gluten should I also go off my allergens? Going of gluten alone is 100% better than when i went off all my allergens alone. Going off it all would leave me eating strictly rice, and fruits and veggies. Not much to eat that has no gluten, soy, corn, and tomatoes.

Thanks so much. :)

If you found the thing that makes you 100% better why would you look for another answer? As time goes on you will find more things that you can eat and be happy with. Personally I would rather have the life I have now that I am healthy rather then all the food I had when I was sick. Sometimes it is hard. But before I went of the gluten every day was hard.

Good luck on finding what works for you.

Nadia2009 Enthusiast
Nadia2009
Posted
..I menstruate maybe once every 7 months or so if even. A few days after I make myself go off gluten I get my period! That for me is a huge sign.

..I have trouble sleeping, and sometimes restless leg. When I try to run I get out of breath really really fast and have really bad leg pains. It's weird because I'm on my feet all day, and am not really out of shape.

..I have ADD. I have a really hard time concentrating, even if it's something I'm really interested in.

..I am constipated all the time. A few days go in between bowel movements. I don't think that's normal?

..I rarely get diarrhea but am always bloated and have been diagnosed with acid reflux

..Sometimes I get really bad stomach pains that make me fall forward in pain.

..I have what was diagnosed as Exzema and it doesn't go away. It's on the back of my arms, the front of my lower arms, top of my legs and sometimes lower and my stomach.

..I was diagnosed with anemia when I was about 12 or so and think I still am

..I have very low energy, and don't sleep much at night. Sometimes I will sleep all weekend because I'm so exhausted.

..I'm a positive person, and see the good in everything but for some reason get really bad depression. I think it's very related to food and thinking everything I'm eating is poisoning me. The side effects of eating gluten with celiac disease scare me a lot. I've been in college since I was 18 (6 years!) and have only been able to work a lot of the time because I've been too sick.

Jenny,

-go off gluten if that's what you have to do to get your periods. That's way too important to your health.

-go off gluten if that's what you have to do to get more focus and succeed in your education. ADD is another big issue and I have heard that ADD could be caused by gluten. I am new to this forum and to the whole celiac issue but I too suffer from a brain fog and went to see the doctor about ADD 3 years ago. He ruled out I had ADD because I had no sign or very little of ADD as a child (on the opposite I was very attentive and was a sponge didnt miss anything) but guess what I had a diet that was lower in gluten also...I grew up in Africa where not everything is made of wheat like here.

-go off gluten if it means to get rid of depression or lack of sleep etc.

But I know it is easy said to go off gluten but we have to do for our health. I took the blood tests and they came negative. People here have told me negative tests doesn't mean you dont have celiac but I really wanted some proofs and I dont have any now. Anyway, one thing I have in common with you is that my years at college-university were my worst years...I complained about so many things...back pain panick attacks, headaches, lack of energy etc thanks God my periods were very regular but they gave me so much pain!

I didn't know about gluten then and intolerances. Anyway, better be gluten free and see how your health can improve and take advantage of your youth than waste your health on a bagel :lol: since you are a college student dont every worry about taking the test just do it...specially the issue with your period is really a big one. If I were you I woudlnt hesitate.

Nadia09

caligirl2001 Newbie
caligirl2001
Posted

Do whatever gives you your life back. If that is gluten free, then do it with no apologies and no regrets. I don't have any insurance either, and I am not concerned enough with an official diagnosis to bother with further testing. Eliminating gluten from my diet, and the difference it made in my health is all the answer I need.

Tests can be wrong, and there is no official test for gluten intolerance. My blood test came back negative, yet I feel like a new person because I decided to eliminate gluten anyway. I suffered through extreme fatigue before eliminating gluten. And if I get into it now, I have 3 or 4 days of feeling so tired that it is hard to function.

As for saying you have celiac when you are not sure, well, the treatment for celiac and non-celiac gluten intolerance is the same: a gluten free diet, so I fail to see what difference it makes. You are simplifying an explanation to protect your health. That's my opinion, for what it's worth.

I hope you feel better soon!

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

      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....
    2. 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!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      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...
    4. 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...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • 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

    • 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/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.