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

Happy To Be Glutened?


T.H.

Recommended Posts

T.H. Community Regular

When I was diagnosed with Celiac, I had no overt symptoms when I would consume gluten. And when I went gluten free, I realized that this lack of reaction made me nervous. How would I tell if I was getting damaged if I don't notice a reaction to the gluten?

So last week, I ate something that I found out later had gluten. Before I went gluten-free, again, I wouldn't have noticed any reaction. Now, 6 months gluten free, I actually HAD a reaction. I was miserable; nauseous, fuzzy headed, general bleh for days.

And it makes me happy. All I can think is that now I have a way to tell when I am eating something bad for me.

I'm curious if anyone else experiences this? Does anyone else have symptoms to gluten, now, that they didn't before they went gluten free? And if you do, how do you feel about it?

If you don't have any symptoms, how do you make sure you stay safe? My daughter still has no symptoms if she has gluten, and I'm scared to death that I'll be giving her something bad for her and we'd never even know!


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



Celiac.com Sponsor (A8-M):



Reba32 Rookie

I had symptoms before, I just had them for so long I figured I always felt like crap because it was normal! After going gluten free and I felt so much better, it was easy to know when I'd been glutened!

gaingus Rookie

I have to agree that I had been feeling like crap for so long, it was "normal". Now that I have been on the diet, it is more easily noticeable than before. It's funny too because my family can tell also. The best advice to avoid being glutened is to get really good at reading labels. When you decide to go out to eat (if you haven't started doing that yet) be up front with the resteraunt staff. I have found out that they can be very accomidating. Also, there is an entire tread dedicated to gluten free menus and restaraunts.

As far as your daughter, its a good bet that she is genetically pre-disposed to get it, but there is a possability that it won't happen. When I found out about mine, it took my family a long time to think back to who may have had it in the past. One day my grandfather was talking and he remembered his dad going to the doctors about once or so a month to be "blead out". He then remembered how irritable my great grandfather would be after meals that contained a lot of bread/breading, so we figured it out from there. Of course this was long enough ago that celiac wasn't known about.

T.H. Community Regular

Oh, I think I gave the wrong impression! While I was hoping that my daughter might not have it (no gut symptoms), I pestered the whole family to get tested after I was diagnosed. Both she and my brother came back positive already. :-( My son was the one with some 'possible' symptoms, but he came back negative!

Sigh.

At least I took everyone off the gluten; regardless of diagnosis, my son's symptoms went away after going gluten free, so I figure that's it for gluten in my family, ya know?

I just keep worrying that my daughter will get the gluten without my knowledge, when she doesn't have that immediate physical symptom. I suppose I'm lucky in that she's really embraced the diet, after seeing all that I went through. She's become the super experimental cook in our family. She doesn't try to sneak gluten in when she's at friends houses or anything, phew!:-)

Thanks for the advice. :-) And I had not realized there was a restaurant thread. I'll have to go check that one out!

I have to agree that I had been feeling like crap for so long, it was "normal". Now that I have been on the diet, it is more easily noticeable than before. It's funny too because my family can tell also. The best advice to avoid being glutened is to get really good at reading labels. When you decide to go out to eat (if you haven't started doing that yet) be up front with the resteraunt staff. I have found out that they can be very accomidating. Also, there is an entire tread dedicated to gluten free menus and restaraunts.

As far as your daughter, its a good bet that she is genetically pre-disposed to get it, but there is a possability that it won't happen. When I found out about mine, it took my family a long time to think back to who may have had it in the past. One day my grandfather was talking and he remembered his dad going to the doctors about once or so a month to be "blead out". He then remembered how irritable my great grandfather would be after meals that contained a lot of bread/breading, so we figured it out from there. Of course this was long enough ago that celiac wasn't known about.

  • 2 weeks later...
Bobbijo6681 Apprentice

I also thought that I had very few symptoms prior to going Gluten Free, but the first time that I ate Gluten after being gluten-free I found out what a reaction feels like. I agree with the others that I just didn't realize how bad I felt, until I started feeling better. It took one intentional glutening and I have swore off of it since. I couldn't believe how badly I felt for eating something that just a month before was perfectly fine, or so I thought. I hope you can work with your daughter to understand the consequences of eating gluten and hopefully she won't have to deal with all of the problems that you faced.

Good Luck!

Archived

This topic is now archived and is closed to further replies.

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

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

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

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

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

      High TTG-IgG and Normal TTG-IgA

  • 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
      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
      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
      @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
      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
      @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.