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 I Really Have To Eat Gluten Again?


heathenly

Recommended Posts

heathenly Apprentice

...for testing purposes? After two+ weeks of eating gluten-free, the thought of having to eat it for one day (much less 90) makes me want to cry.

But I do want a diagnosis. And am scared to death I'll go through this just to be told I'm not Celiac. Not that I want to be, but I seem like the poster child for Celiac symptoms, and I want medical permission/justification to never eat gluten again.

Signed,

Awake at 3 a.m. Because of a Reaction to gluten-free Corn Pasta


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



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

Yes, you reAlly do. By being 2 weeks gluten-free you run the risk of your antibodies already dropping, so if you are going to be tested, start eating it immediately. I don't think you would need a 90 day challenge though, since you haven't been gluten-free too long. Just start eating it and schedule the tests. Be sure it is a full panel.

And be prepared for a negative result. It doesn't mean you aren't sick from eating gluten. 30% of celiacs will have negative blood work, and non-celiac gluten intolerance will always test negative.

roxieb73 Contributor

I did the same thing and had the outcome you fear. I was told because of my genes that I am not celiac. However I do have Lichen Planus which is an auto immune reaction to Gluten. I also have a lot of the symptoms. Including Vitamin deficeincy. My Vit D was critically low. Then I have iron deficeincy anemia, so low iron, b12, folic acid. Low normal mag and who know what else. I also have many neurological symptoms. But not Celiac. lol I believe in the future they will include my gene type in the Celiac family in the mean time... I have been told to eat Gluten Free? and take a crap load of vitamins. Hmmm sounds like Celiac to me.

Bottom line even if they say you are not Celiac doesn't mean Gluten isn't your problem! ;) If you want try the diet and just see if it helps. If you really want the diagnosis YES you will need to eat gluten and still might have a negative reaction. Sucks but it is what happens.

GlutenFreeAustinite Contributor

Yes, unfortunately, you do. I was gluten-free for 18 months quite successfully, but have been on gluten for two months now for testing. And you have to eat it for at least two months, preferably more. My blood tests were negative after one month, but positive after two. By the time my scheduled endoscopy/biopsy rolls around, I'll have been eating it for three.

While it's fun to eat all the gluteny foods you normally can't, and REALLY nice to not constantly be checking ingredients, it's rough. I've been sick/getting sicker over the past two months and I'm so ready to be done. Good luck though!

heathenly Apprentice

Yeah, I know gluten is a problem, but if it's Celiac I need a formal DX. It would be useful for my family. My son has Crohn's and I think maybe other people in my family have gluten sensitivities or Celiac. Suddenly lots of things would make medical sense!

Back to gluten until testing! Hopefully I didn't do too much "damage" (ha) by staying gluten-free for this short period of time... last week I would have been thrilled for an excuse to eat gluten; this week I dread it. So not worth it.

heathenly Apprentice

And thank you all for the replies!

MoMof2Boyz Enthusiast

Yes, unfortunately, you do. I was gluten-free for 18 months quite successfully, but have been on gluten for two months now for testing. And you have to eat it for at least two months, preferably more. My blood tests were negative after one month, but positive after two. By the time my scheduled endoscopy/biopsy rolls around, I'll have been eating it for three.

While it's fun to eat all the gluteny foods you normally can't, and REALLY nice to not constantly be checking ingredients, it's rough. I've been sick/getting sicker over the past two months and I'm so ready to be done. Good luck though!

did you eat foods with gluten for every meal?


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



Celiac.com Sponsor (A8-M):



GlutenFreeAustinite Contributor

Not every meal, but I'd say probably at at least 2 meals. And maybe a few snacks.

heathenly Apprentice

I've been eating gluten again since Friday (in preparation for tomorrow's GI visit, and likely, blood test), and I am an emotional, bloated mess. Hate this. Also, my nasal allergies have all the sudden started back up, and my sleep problems. Fatigue. Bleh. Energy level low. Can't wait to not have to do this anymore.

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

      Son's legs shaking

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

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

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

      Son's legs shaking

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

      Bob red mill gluten free oats

  • 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
      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
      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/   
×
×
  • 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.