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

Is Gluten From A Pill Enough?

NoDayButToday

Recommended Posts

NoDayButToday Newbie
NoDayButToday
Posted

Hello!

New here.

Don't know too much about celiac, but do have Lyme and other health issues...

My gut (no pun intended) tells me to get tested for celiac.

I have been tested for the gene - positive. Also, I have tested positive for antibodies to gluten & dairy via DianosTechs stool testing (not sure if this is considered reliable).

Anyway, I would like to be tested, as I have I have been gluten-free for six mos and am not feeling better. I recently discovered that one of my supplements that I've also been taking for these six months contains defatted wheat germ (the only time my gut felt better was when I had to stop my supplements for the stool testing - go figure!)

So, my question is, if I have been consuming no gluten but these pills for the past six months, is that enough before I do the blood testing? Please say yes!

Thanks!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Hello!

New here.

Don't know too much about celiac, but do have Lyme and other health issues...

My gut (no pun intended) tells me to get tested for celiac.

I have been tested for the gene - positive. Also, I have tested positive for antibodies to gluten & dairy via DianosTechs stool testing (not sure if this is considered reliable).

Anyway, I would like to be tested, as I have I have been gluten-free for six mos and am not feeling better. I recently discovered that one of my supplements that I've also been taking for these six months contains defatted wheat germ (the only time my gut felt better was when I had to stop my supplements for the stool testing - go figure!)

So, my question is, if I have been consuming no gluten but these pills for the past six months, is that enough before I do the blood testing? Please say yes!

Thanks!

Not too sure. Not sure anyone knows that answer, but here are the tests:

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Hello and welcome!

NoDayButToday Newbie
NoDayButToday
Posted
  • Author

Thanks for the welcome & info!

I think i'm just going to try for it, since I've met my deductible and I have been consuming some gluten (even though not too much).

If it's negative, then i can decide if I want to try it again w/more gluten. If positive, voila!

kareng Grand Master
kareng
Posted

Thanks for the welcome & info!

I think i'm just going to try for it, since I've met my deductible and I have been consuming some gluten (even though not too much).

If it's negative, then i can decide if I want to try it again w/more gluten. If positive, voila!

Your insurance might not pay for the same test twice in a few months time. Especially if the first test is negative.

IrishHeart Veteran
IrishHeart
Posted

Anyway, I would like to be tested, as I have I have been gluten-free for six mos and am not feeling better.

So, my question is, if I have been consuming no gluten but these pills for the past six months, is that enough before I do the blood testing? Please say yes!

Probably not. I would gluten up before the test. IMHO

NoDayButToday Newbie
NoDayButToday
Posted
  • Author

Your insurance might not pay for the same test twice in a few months time. Especially if the first test is negative.

Hmmm that's a good point. This is a tough one. I feel like i want to take advantage of the fact that I've inadvertently been eating gluten, since i plan on going totally gluten-free asap.

NoDayButToday Newbie
NoDayButToday
Posted
  • Author

Called my dr. yesterday(whom I love, and who has Celiac himself). He told me to come in and get tested right away, so I did (through Prometheus).

From what I've read, most people think that's not enough gluten. I guess if it's positive it'll be clear, and if it's negative, I'll have to re-evaluate.

At this point, I don't think I'm up for a gluten challenge, so will probably drop the search for diagnosis if it comes back neg.

I will most def. remain gluten free. So, I guess it's not crucial to get the dx. But, I'd really like to know for sure!

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
NoDayButToday Newbie
NoDayButToday
Posted
  • Author

Whelp, y'all were right - it wasn't enough :(! Got the results back today - just said negative serology...

I know I'm positive genetically, via stool tests for antibodies to gliadin & casein, and feel very sensitive to gluten.

I could not handle the gluten challenge - too many other health issues to contend with.

Is it a good bet to assume celiac and be really careful? As mentioned above, I have Lyme, hypothyroid, adrenal issues...

GottaSki Mentor
GottaSki
Posted

Negative blood work does not mean that you do not have Celiac Disease. If you have the genes, the symptoms along with improved symptoms while gluten free - you have your answer -- stay gluten free.

NoDayButToday Newbie
NoDayButToday
Posted
  • Author

That's what I'm confused about...if you have the genes and symptoms, is that pretty much celiac? Or, can you have the genes and symptoms, but have it be non-celiac gluten intolerance?

My gut says celiac, but I guess I'll never know...? Do doctors ever make clinical diagnoses of celiac?

nora-n Rookie
nora-n
Posted

Lyme patients need to be gluten free anyway, so I guess you need to be glutenfree anyway.

Yes, wheat germ from a pill could be too much gluten for you. But in Europe where some countries have wheat starch, the recommendation si to consume no more than 50 mg gluten a day from wheat starch. Some tolerate way less.

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
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      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...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      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....
    5. 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!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • 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!
×
×
  • 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.