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

Also Feeling Overwhelmed.

LuLuBee

Recommended Posts

LuLuBee Newbie
LuLuBee
Posted

Hi!

I am soooo tired of feeling sick and tired! Through trial end error over the past 9+months I have figured out that I am at least Gluten Intolerant/Sensitive. 6 Day's out of the week, I seem to experience some symptom related to GS. Sever abdominal pain and swelling, flatulence, irritability just to name a few. After reading another recent post about being new to Gluten Intolerance, I am convinced that testing is the way to go. I pay my Naturopathic Dr. out of pocket for blood work, visits and meds. This is because I lack insurance. The Celiac test will 1) require me to pay $250 and 2) remain on Gluten for at least 2 weeks. Here's my question:

How much gluten do I need to have in my system? More than the frightfully high cost of the test, I'm seriously considering dealing with the pain its going to cause to make sure the test is done as thoroughly as possible. As it is, I keep trying desperately to keep it OUT of my system, but I manage to slip up sometimes. I recently had one week of feeling really really good! No flatulence, no bloating etc. I managed to ruin it all with 3 small bites of rice with GRAVY. I didn't even think! Within 30 minutes I was in pain. ( for me I describe the pain as akin to swallowing liquid razor blades) And the after affects are not much nicer.

Would I have to eat a little bit of something gluten-y everyday? or just once or twice per week before the test?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hi, and welcome, LuLuBee. I am afraid you are not going to like my answer to your question :( A gluten challenge for testing requires you to eat the equivalent of 3-4 slices of bread every day for a minimum of six weeks for the testing to be valid. Medical professions give varying false information about what it takes, but the above figure is the generally accepted one.

Cara in Boston Enthusiast
Cara in Boston
Posted

My doctor said 4-6 MONTHS of eating a "regular" amount of gluten daily before going for testing - this was after a short time being gluten free (2 weeks). I'm afraid you would be wasting your money if you tried to get tested after just a couple of weeks. (and perhaps your doctor is not as knowledgeable as you would like to think.) If you already know you are gluten sensitive, why do you feel you need the test? What would you do differently?

Cara

kareng Grand Master
kareng
Posted

The Celiac Center at the Univ of Chicago does free blood testing in October. They sent me a postcard about it and it said you must have 3 months on a "regular" gluten diet.

ravenwoodglass Mentor
ravenwoodglass
Posted

The Celiac Center at the Univ of Chicago does free blood testing in October. They sent me a postcard about it and it said you must have 3 months on a "regular" gluten diet.

3 months was my understanding also. However if you body reacts very badly to the challenge let your doctor know. Some will have you stop the challenge.

Skylark Collaborator
Skylark
Posted

If you want to be sure of a relapse since you're paying out of pocket, you need three months of gluten challenge. As everyone else has said, that means a "normal" amount of gluten like 3-4 slices of bread a day.

I never challenged for testing. I decided it wasn't worth poisoning myself to learn what I already knew, that I need a strict gluten-free diet.

tom Contributor
tom
Posted

Stanford says a half slice of bread/day for a month.

Isn't the only thing to agree on is that there isn't consensus?

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Stanford says a half slice of bread/day for a month.

Isn't the only thing to agree on is that there isn't consensus?

It's more likely we'd agree that many doctors/clinics have not read the scientific literature. Here is some gluten challenge stuff I found from a thread a while back.

LuLuBee Newbie
LuLuBee
Posted
  • Author

All that information is great guy's. Thank You. :)

Its funny, because I'd originally decided that the pain was to great. I think I was just grasping at straws. I'm still trying to understand it all. Cara, I don't honestly know what KNOWing would change. I don't know what I'd do differently. That was a great question. My ND actually suggested I NOT get the test because it was too painful. But if I WANTED to, I could. Knowing that it is hereditary, I may have my son and daughter tested instead. They are not having any painful symptoms yet, and they are definitely not gluten free....yet. :-).

tom Contributor
tom
Posted

It's more likely we'd agree that many doctors/clinics have not read the scientific literature. Here is some gluten challenge stuff I found from a thread a while back.

Well I went & read those - or the abstracts anyway. I don't think any of them sheds light on the length/quantity issue of a gluten challenge.

For starters all 3 are about dx'g children, notoriously more difficult for whatever reason than dx'g adults.

From the referenced post:

...

Here is an article showing median time to relapse in children with gluten challenge with a low amount of gluten is 13 weeks.

Open Original Shared Link

...

The abstract says the 13 wk median time was the duration of the challenges. With just monthly blood tests & an end-of-challenge endoscopy, the experiment wasn't designed to measure "time to relapse".

All 24 kids were quantifiably affected, including the one w/ the shortest challenge, at 5 weeks.

Quoting the abstract's entire Conclusion:

"Gluten intake during the challenge varied widely, and the parents were unable to give their children the recommended amount. Despite the small amounts given, all children showed signs of relapse at a clinical, laboratory, or histologic level. Much smaller amounts of gluten than previously suggested seem sufficient to cause relapse during gluten challenge in children."

They don't know either.

It's not an easy experiment to do. Gotta convince celiacs to challenge until they're sick & continue self-glutening for months. Who'd sign up for that?

We'll better know the characteristics of a minimum length/quantity of a valid gluten challenge someday, but today I've seen knowledgable forum members differ by 2x plus.

Skylark Collaborator
Skylark
Posted

Fair enough. This whole "poison yourself to get a diagnosis" issue stinks. I know kids are a little different in terms of antibodies but do you really think they are that different from adults in terms of time to relapse? I guess we really don't know.

You're right that the correct experiment is an awfully tough sell for your subjects! :lol:

LuLuBee Newbie
LuLuBee
Posted
  • Author

Thank you Guys, for all of the comments and support. I decided to give up on the idea of championing. I have been making a stronger effort to live gluten free, and have succeeded in 1 week without too much pain; I can tell when things get "stirred up" that that is when I feel a little queasy, but that's it, and it didn't last to long. I will continue to stay as gluten-free as possible. I have felt great all week! I will be getting my children tested soon though, as $$ allows. ;)

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):

  • Who's Online (See full list)

  • 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.